I’ve had this for over 30 years and never knew what it was. Whenever I go to the hospital and tell them I’m allergic to meat they just look at me strangely. I don’t know if this goes away after time but I’m not about to try eating meat ever again. I get Migraines, difficulty breathing, chest pains, stomach cramps, constipation and a constant feeling of diarrhea at the same time.
I had a titer run for alpha gal and it read 32. What are the values for the test? Does any value mean you are positive for the allergy, which I do have. Will the titer go down?
you are in the middle area as am i. you can be tested again in a year to see if the titer is down or not. i personally will never eat meat again just in case. i have found in the vegan section Morning Star crumbles, all soy and tastes like hamburger
Be careful about Morning Star products. They are soy products and cause a lot of other problems. I used them regularly and ended up having very large uterine fibroids and suffered a lot of pain as a result of that.
Look for QUORN Crumbles in the freezer section. I like the texture better. No soy involved.
My test rest was 70.59
I first developed symptoms about 6 years ago but the doctors could never figure out what was wrong just said I probably had an allergy to processed foods and to cut them out which I did. But I would have weekly anaphylaxis attacks. Finally I switched doctors 4 years ago and she sent me to an allergy specialist. After explaining to him my symptoms and what happened the alpha-gal test was the first thing he ordered. My test rated at 94.7 and has not changed in the past four years. I have to read every label on food products to make sure that it does not contain any whey or mammal meat products. You also have to watch getting certain types of shots because some of the them like the tetanus shot is made with a beef base. I learned that last year when I needed stitches and went to the hospital. The nurse after reading my allergies called a pharmacist and asked about it. I couldn’t get the stitches because I couldn’t get the tetanus shot. There are many, many foods as well as candy products that use whey protein which can cause some very major side affects. I am hoping now that there is much more awareness about this allergy that some day a medicine will be developed to help combat it. I really miss a good cheeseburger. Good luck to each one of you.
I just tried Morningstar grillers and had an anaphalactic reaction. Not sure what is in them that caused it, but I will not use this product again. Also they are made with GMO’s.I prefer the Lightlife brand. I have not been tested for Alpha Gal but there is not doubt I am allergice to mammmalian meat and I had a tick borne illness in 2008. I feel better being vegetarian anyway.
Does anyone else suffer with lingering symptoms all the time
Mostly, we think like vegans now and eat Asian food that can be cooked in clean woks with no cross contamination fears from red meat/mammal or dairy. I’ve read so many comments on this site that say, “I’ve stopped eating red meeting but I still have symptoms”. At that point, you have to stop eating anything from a mammal. No cheese, butter, casein, gelatin, marshmallows, milk powder, milk fat, whey, yogurt…. It goes on. The gel caps on his herbs make his blood pressure go up and make his hands shake. No more Cheetos, breads, pastas, etc unless you can read the ingredients.
The last big one that got my husband at the company picnic was a chicken strip with buffalo sauce…. Buffalo sauce has butter in it. He didn’t know.
But! Read read read! Bc even some of the “vegetarian” cheezes have casein added for flavor to make it more like real cheese. It’s a no no. Must be VEGAN certified cheeze. And bouillon….read soup labels! That stuff is loaded with stuff alpha gallers can’t have. Milk powder is in way more things than ppl realize. Protein shakes? Don’t get me started. If you have severe alpha gal…you not only have mammal meat allergy…you have dairy allergy.
Trader Joes has printed lists of vegan and veggie products that they’ll give you for their store. The folks in Wholefoods are super groovy about helping you find good stuff. if you eat in restaurants, look for the vegan certified options and make sure your food is cooked on tinfoil away from any other food on the grill. At Denny’s, eat poached eggs and fruit. It’s the only safe stuff. Talk to restaurant managers. They have to ensure that your food is cooked safely.
Hey Mary, I looked up Morningstar grillers, and they have Cultured Whey in them, which is milk. Most dairy has at least a minimal amount of alpha gal and increases with the level of fat content. There are also several vitamins listed that could be mammalian derived.
Just wondering what everyone’s numbers were when tested. Got mine back today and it is 21.8…I live in NC. I have not had anaphylaxis but intestinal issues when I eat red meat or pork…very uncomfortable.
My allergist at Vanderbilt told me that the test stops running at 100 and my numbers were over 100. I was having episodes of anaphylactic shock every two weeks or so. No mammal meat for over 2 years. Just had blood drawn to retest yesterday and waiting on the results.
Please let us know what you find out.
I am also being seen at Vanderbilt, but when I told my allergist about the amount of Lone Star tick bites I’ve had since mid-April 2014, he shrugged it off. Since April 30th I have had 4 anaphlayxsis episodes. They have not done any tests to see what I could be allergic to. A friend of mine brought the thought of tick bites back to my mind and that is when I found out about the research the University of Virginia has done. I plan on taking my findings to my next appointment and demanding that the Alpha-Gal allergy test is done. I am so ready to finally have an answer. This experience has been so terrifying
The result was 14.60. Still high but has gone way down so I am encouraged to keep getting tested every year or two.
I have also been going to Vanderbilt ASAP Clinic since 2001 and they tested me for everything over the years with no success. I called and asked if I could be tested for meat allergy after hearing about someone else in my area that was diagnosed with Alpha Gal. My test results came back at 15.1 and they said that meant I was highly positive. Dr. told me that there was no reason for me to come back next year that my levels would not go down. I have now not had any red meat for the last 4 months. I still have episodes of hives on my hands and wrists but no extreme anaphylaxis like before with low blood pressure to the point of passing out, extreme diahrrea and extreme hives all over my body.
Mine was over 100 as well. Wondering if I can eat alligator, not sure what category that falls under..
I just found out I have it now. I’ve been thru the er visits doctors said it was anxiety panic attacks even with welts and stomach problems. Heart doc put me in the hospital to say it’s my stomach. y gastroenterology sent me to allergist. Allergist ran no tests and said Angio Endema.It was my husband who ran across an article about tick bites and I requested Alpha gal test. Just came back a week ago positive my problem is lingering symptoms even though Im not eating any mammalian meat, gelatin, glycerin, pesticides or any dairy. I still have lingering symptoms welts itching a swelling lip. Any ideas out there Id appreciate. The nights are the worse with heart palpitations and digestive problems.
Teresa, Do you by any chance have a cat? There is some research being done that people with alpha-gal also react to cat skin cells.
@ bob clifton, I also suffer from Alpha-gal, I can tell you that I have had no issue at all eating alligator meat. As a matter of fact I am placing an order to have it shipped to me in Idaho.
I’m so sorry I’m only 12 but I still no how it feels because I was only 4 when I had this well I still have it but anyways I went to anaphylactic shock and then the stupid doc sent me home and said I would be fine but then my mom told me this story about when I went into acoma because it was so bad.
who do you see at Vandy?
I just got diagnosed positive by PCP for Alpha-gal.
Teresa – I am newly diagnosed at 34.2 and would be very curious to know if your levels have dropped after 2 years.
I have been diagnosed,this year,with the delightful Alpha Gal Meat Allergy. I am sure that I have had it for more than 17 years. Very scary. There is no doubt in my mind that our government has a hand here….. Plum Island…just off the coast of CT. Look it up.
My dad was a research scientist at Plum Island for decades. Their work had nothing to do with Lyme’s disease and, or alpha gal. No need to find a demon in these cases! Thank the scientists from PI for preventing many outbreaks of animal diseases on American soil! I had my first Alpha Gal reaction in Virginia over a decade ago. My antibodies have decreased over time, but occasional chigger bites will ramp my symptoms up again. Very scary. The study of the increase in people with allergic reactions in our world today, is what I’d like to see! I don’t recall anyone dying from eating daunts when I was a kid!
Sorry for the typo, I meant “peanuts” not daunt. Lol hate spellcheck sometimes…
i have alpha gal from a tick bite the research is clear 11 trips to the er with welps all over my body after eating beef was tested i do have it bad in fact to the point of it being life threat. im wondering if anyone can eat pork .. it seems like if the pork is white meat you can eat it or tolerate it but if its more red like ham hocks you cannot.. does anyone know if you can eat pork or not.. im willing to risk it but i wanted to know what others reaction is … i used to be allergic to cats but that stopped a few years ago and ive had a cat ever since not sure if its related in any way but for sure .. dont eat beef.. the antibody reaction to the sugar in your blood is like a volcano …
Pork is not white meat. It is red meat. My wife has the alpha gal allergy. Fortunately, here reactions are only to beef. She can eat pork and venison, but not beef or buffalo. Most buffalo also have bovine genes.
She might want to stop with non beef as well. I was like that and then it turned to attacking my joints. Now I have to avoid all mammals and dairy.
I also live in North Carolina. There are lots of us here!
To Bob Clifton: alligators are not mammals so do not have the alpha-gal carbohydrate so yes, you can eat alligator, snake, turtle, etc; any cold blooded animal.
To mars hoffman watchers society fb: pork is from a pig which is a mammal so no, you can not eat pork without an allergic reaction. You can eat fish, foul, reptiles, amphibians, primates (if you so desire; for some reason they [we] do not naturally have the alpha-gal carbohydrate)
Chatham Co. seems to be the worst. Tick capital of NC.
I have a situation with the alpha-Gal that is weird and the allergist don’t believe there’s a connection. I think they are wrong. I also at the same time contracted cold contact urticaria. (I’m also allergic to the cold) it happened at the same time and was hard to separate. The meat alpha-Gal hive are different, the Urticaria hives are on extremities exposed to cold. Without medication 70 degrees is cold enough. I NEVER HAD THIS BEFORE! I think this disorder is so new they don’t know everything about it. Martha
Theirs message was for Pam, the hives are on wrists and hands. It can be treated with medication, get tested for cold contact urticaria. If you have a hospital emergency where you have to have you body temp lowered its dangerous!
This message was for Pam. The cold contact urticaria can be treated with medication but can be bad if you had a medical emergency where they had to lower your body temp. There is a test for this.
I have the opposite situation-the dr. told me it was Urticaria solaris or photo uticaria. I do still get hives when I’m out in the sun, but not as frequently now that my levels are down to 12 from 28.6. We have a farm and I’m outside a lot. The ticks are bad this year and in spite of all the precautions I take, I’ve had two bites. I get tested at the end of the summer-we’ll see…
My husband had the same thing happen, Alpha gal allergy and then cold allergy. No idea if they are related but does seem odd.
Martha, I also get urticaria from temperature fluctuations. Usually, mine are from a rise in my body temperature, but I have had incidents in cold temperatures. I tested positive for Alpha Gal, with strong allergic reactions to beef, pork, and dairy. I also have numerous food allergies, aside from the ones I already mentioned. There is a definite connection between Alpha-Gal and temperature fluctuations in some people. I feel my uticaria is minimized on a diet free from dairy, but I still have allergic reactions that I can’t explain. Mine started over a year ago, and it’s been life changing, because everything is a potential allergen. For what it’s worth, you are not alone with this.
I have the same thing, called reynauds syndrome, caused from being cold, I have had the allergy to red meat sine I was pregnant with my son 26 years ago. I don’t think there is a connection But you never know
Just got my number and it was 41.2. I have extreme intestinal issues. I hope there is an answer besides avoiding red meat. I am currently seeing a nutrition consultant.
My numbers were 75.0
I never eat anything without reading the label.I made some serious mistakes. Had chicken sausage and the casing was pork. Ended up in the emergency room. They treated me like I was a nutcase.
I live on fish, Chicken, almond butter, & I make protein drinks using the Raw Protein powder.
My allergist thinks that we don’t have chiggers on Long Island that its the larvae of the lone star tick.
Hi- We have chiggers on long Island ! I live in MTK. I have alpha gal and it’s not from a lone star bite it’s from chiggers that I contracted when walking in trails or on beach. Sorry about you ending up in hospital. Bell & evans makes an organic chicken dog- like a hot dog in a package of 8 for $9. No casein. I have been eating them this summer and I love them. I put them in frying pan with a little olive oil.
Sometimes allergists include chiggers with the Lone Star Tick so people will be aware that seed ticks (baby Lone Star Ticks) can cause this allergy the same as an adult, but if you have this allergy, you have been bitten by a Lone Star Tick or another tick that causes this allergy (in other countries). Physicians will say that people don’t always know they have been bitten, will scratch a tick off in their sleep and never see it, etc.
I live on Eastern Long Island & have pulled Lone Star ticks out for the last few years. 2016 was the year that I developed alpha gal. My allergist said I should re-test after 5 months. (I miss bacon!). I’ve noticed if I go out for breakfast I wind up with nausea & abd cramps, I think because it’s cooked on the same surface as bacon & sausage.
Powdered coconut milk has casein from milk in it so I make sure to use canned coconut milk now. My gluten free crackers contain whey. So many hidden ways to get sick! Vigilance is non stop! I read labels on spices and anything I add to my home grown chicken and vegetables.
Normal values for non-allergic people is 0.35. The test range is from 0.1 to 100.0. This is from the test makers (Viracor-IBT).
I just read in a lab manual that the range is 1-100 with healthy under 0.35. I was told I was 31 and my allergist described that as “pretty high”.
Anything over 0.35 is considered positive for Alpha-gal. Unfortuanately the number does not correlate with the intensity of the reaction. Someone with a 2.0 can have an anaphylactic reaction and someone with a 43.0 might only have gastric issues or vice-versa. For myself, I have gone from a 43 down to a 14 in two years of avoiding mammal ingredients.
I have had alpha gal for 10 years. Besides always avoiding mammal meats and limiting dairy, I never go anywhere without children’s liquid Benadryl. The minute I feel an unnatural itch I take 25 mg. If it doesn’t stop after 10 minutes I take another 25 mg. Preventing the reaction from progressing is the best way I have found to avoid using my epi pen which is also always there. I haven’t had to use it in 4 years. I don’t know what my numbers are but I live in tn and have had 4 tick bites so far this year. Laura
Hi – It seems that the longer you eat meat after the first reaction the worse the reaction gets each time. That makes sense from an immuno-response point of view. In my case it was over a year before the diagnosis and that came from a gastroenterologist. I wound up in the emergency room recently and they had never heard of this allergy. Scary. Also, I now find that ANY meat based by product can trigger it, like mono and diglyerides, glycerin,gelatin, whey, rennet in regular cheese, etc. so I have to shop at Whole Foods and rarely eat out. Good prepared meals are Amy’s, as their cheese does not use rennet. There is actually a major error on this web site’s disease description as it says tiny amounts of meat won’t be a problem. Oh yes they will!! I ate something with whey in it one night and that was the next morning when my grossly swollen tongue sent me to the emergency room.
One other tip – if you find that just omitting meat itself is not enough, try looking for a list of meat by products so you can avoid them -stearate is another. And there is a web site called foodfacts that can tell you the contents of many prepared and restaurant foods. A tip – Snickers has no meat by products – many candies, prepared baked goods, bread, and other prepared foods do. Good luck!
I ate a fun size snickers and was sick 6 hours later, has milk products
Snickers® | Nutritional Information
Ingredients Declaration: MILK CHOCOLATE (SUGAR, COCOA BUTTER, CHOCOLATE, SKIM MILK, LACTOSE, MILKFAT, SOY LECITHIN, ARTIFICIAL FLAVOR), PEANUTS, CORN SYRUP, SUGAR, PALM OIL, SKIM MILK, LACTOSE, PARTIALLY HYDROGENATED SOYBEAN OIL, SALT, EGG WHITES, ARTIFICIAL FLAVOR.
I just found out York peppermint patties that I was eating because they are gluten free have milk! I am already allergic to wheat, soy, rice and now have Alpha- gal! Add fish allergies and I am pretty much a chicken and veggie only woman! Wish me luck! Thanks for the tip about stearate.
I was having allergic reaction after taking Vitamin D soft gels. That was when I learned about reaction to gelatin.
Vitamins can also come from mammals so always select only vegan vitamins. Used to think I had a problem with orange juice but it was actually the added vitamin D.
Claudia, you’re not alone. Our lives have changed so dramatically now that my husband has alpha gal. Thank you for posting about the meat by-products. Allergists don’t seem to be telling their patients to avoid dairy too or about restaurants. We used to eat out all the time. Now, we only eat out Asian. He’s having symptoms again that remind me of the stmptoms that he had before he rolled over to anaphylaxis and we’re worried that there’s yet, another phase to this. What’s next? It’s like he’s becoming allergic to any meat, period.
Stay well. Stay vigilant. Please keep informing ppl. I work in a hospital in Maryland and no one had ever heard of this.
I see you are in Maryland, so am I. I was finally tested and would love to talk to someone in my area who also has been diagnosed. I actually had an anaphalactic reaction to the tic bite a couple of years ago. They never caught it. Too many food allergies to count. If you have time I will leave my email so we can chat.
Basically we are allergic to everything. Let me explain…..Alpha Gal is nothing like a normal allergy, and isn’t so much of an allergy as it is an autoimmune disorder. With normal allergies to …for example….a strawberry: A person eats the strawberry, has a reaction, is treated, and when the strawberry leaves the body, it’s over. Alpha Gal NEVER leaves our bodies. This means that histamines are CONSTANTLY being produced, 24/7 up until the day you test negative. That said, what people are mistaking for cross over allergies, are sometimes nothing more than the fact that the histamines have built up in the body to an unacceptable level, and you could have a reaction at ANY time. And often people attribute it to a new allergy not involved with alpha gal. I have had to E.R. visits after eating NOTHING. My histamine levels simply were up to high because we are, in a way, now autoimmune. Please, as a precaution, make sure your husband takes a regimen of good antihistamines. I take two that I KNOW have no animal components because I called the manufacturers myself. The first is Children’s Liquid Zyrtec, and keep in mind that ONLY the Bubblegum flavor has been test to be animal-free. The second is Flonase nasal spray. Again, I don’t want to scare anyone but it is a fact: avoiding triggers ONLY will not completely protect you from an attack! Have ay other medications you might need custom compounded to avoid at LEAST three ingredients at ALL times: magnesium stearate, lactose and/or lactose monohydrate, and above all, gelatin….Almost every over the counter medication contains one or more of these, even aspirin. DON’T LET HIM TAKE THEM.
I was recently diagnosed with Alpha Gal. My number was 22.60. I do not have a reaction every time I eat mammal meet, but every time I’ve had a reaction in the middle of the night, it was after eating a hamburger, steak or pork. Yet if I eat a sausage or ham sandwich, nothing happens. Is this common among others with Alpha Gal? I sometimes eat beef then take a Benadryl right afterwards just in case. I don’t expect my wife to change her diet because of me. Do others also have intermittent reactions?
Brian, it’ll get worse. Enjoy what meat you can but gradually you’ll have to limit portions. . .then eliminate beef altogether. . .then pork. . .and yes, it’s a lifestyle change. Your wife will be healthier.
I was recently diagnosed with Alpha-Gal a few months ago after about 6 years of reactions that would put me in the emergency room. I have found that I have a reaction when eating beef in particular. I can eat bacon in the morning with no reaction. All of my reactions have been in the middle of the night as well. I also will take Benadryl if I eat meat or if I feel the least bit itchy. I know another person that can eat pork, but not beef.
If you have been diagnosed with alpha-gal allergy, it is not safe for you to eat any mammal meats! This is a potentially life-threatening allergy, so please be careful!
I can everything except beef (i.e. dairy, pork, venison, buffalo).
I found out I had this allergy after 3 bouts of anaphylaxis. I’m a vegetarian, so it was easy for me to pinpoint, as the only three times I ate meat because it was served to me, I went into an allergic reaction.
I just wanted to say that I know people who had it for a few years, then we’re able to resume meat eating as usual. I can eat any meat except for red meat. This means I can also eat pork.
Currently we are implementing meat into our diet and I’m testing the waters to see if I’m still allergic. It’s been almost 2 years since my last reaction.
My daughter has the Alpha-Gal allergy and we were told that the more she eats meat the worse the reaction will be. I would be very careful if I were you.
I noticed the same thing. At first I was diagnosed with a beef allergy because I didn’t react to anything else: pork, bison, or lamb. I kept eating those things for about a year then finally reacted to bison, then had a really bad reaction to pork. My allergist could not find a definitive answer for me, but it seems reasonable that my antibodies were building over time (?).
I was blood tested for beef allergy. It came back positive. I also suffered hives, itchiness, stomach upsets 3-6 hours after ingesting beef. I have been eating all other meats and have been fine for over a year now. Just had a re-test done for beef allergy and it came back NeGaTiVe. Not sure what to make of it? Lone Star tick bite? Apparently this can cause allergy for up to 3 yrs?
You might want to think about getting a blood test to confirm or deny the presence of alpha-gal food allergy. There isn’t a time limit on this allergy..It may go away in time, particularly if you can avoid more tick bites.
Please please please…have them test her for the meats she’s most sensitive to. Bc not only can she be allergic to let’s say, beef, but then cow milk, cow cheese, beef bouillon, soup stocks, seasonings, etc. she needs to read every label all the time. My husband has this and after an apparent 2nd bite in 2 years, we’ve had to stop eating in restaurants too. Just chicken cooked on a grill next to a steak can cause him to give out or “crash”. Anything that has dairy, casein(a byproduct of cheese that’s added to other foods), gelatin, etc….any byproduct causes his system to tank. He’s an uber athlete and alpha gal is making him miserable bc he has to watch everything that goes in his mouth. We eat nothing processed anymore. Please be careful. His has gone from a daily annoyance to a daily death avoidance.
I haven’t eaten meat for 20 years because it makes me so sick- any meat product – this includes anchovies- nwo I cannot even consume broth without getting sick– I have horrible stomach pain and now my muscles sting after any meat product gets into my diet- now one ever beleives me but I have had it happen and then later learned of the animal product- I can eat eggs and cheese and milk– its jsut like the animal protein is like poison to my body– its getting worse and now I am concerned – also a little tired of people responding like I am crazy! I am not– I get centralized pain in my appendix area and stomach pain and then I feel like my jaw cramps and muscles hurt- I have learned to take Benydryl rather than just Pepto
I am so glad I found this site. About 2 years ago I had a tick bite and soon after was on a lot of pain killers and medications for complications to a broken arm. After almost a year of hives I managed to see an allergist who diagnosed the problem as alpha gal. I had also developed allergies to wheat, corn, peanuts, milk and tomatoes to name just a few.I’ve never been allergic to anything and here I was at 63 with all these allergies. What I am getting at is that this emergence of multiple allergies may be tied into the leaky gut syndrome, not just alpha. If anyone is suffering from multiple allergies, as I am, they may wish to look into Gaps,Gut and Psychology Syndrome. It may not do away with the alpha gal but it may help.Thanks for reading.
Hi, I am quuite intrigued by your case and connection to leaky gut. After long bouts of respiratory infections, treated with months of antibiotics and steriods I developed thrush then systemic yeast. Since May of 2013 I have changed my diet, been on antifungals, both prescription and natural. But I could not get well. I became hypersensitive to absolutely everything. Had to change detergents, only wear all cotton clothing, our entire family had to start using the same soaps, shampoos, deodorant, you name it as me. And still I continued to go downhill. Finally I saw a an environmental-allergy specialist. He focused on the candida ( despite my wide range of health problems my entire life) based on test for candida he created a serum for me an antigen or antibody to try to rebuild my immune system. Every time I give myself a shot it makes me sick. I’ve always had asthma and upper respiratory infections, diagnosed with osteoarthritis at 22. Had a full hysterectomy at 27 due to endometriosis (problems since age 12).
By the time I went to see him I had not eaten for 5 days. I expected he would give me some sort of fluids to jump start me, but no.
My magnesium level was 7.5, normal is 150. Calcium, potassium, creatine all very low. He said I looked as though I’d been in a starvation camp. He also tested my adrenals and my blood pressure dropped down next to nothing almost immediately. Everything sends me into Anaphylaxis. The last thing he tested was my thyroid and it appeared to be not working so he started me on non synthetic medication. As I increased my dosages over the past 3 weeks j just got worse (my gut instinct was the pork in this is about to kill me) and I wish I would have followed it and stopped taking it. Withought a doubt I have leaky gut. I had giardia when I was 21. I’ve had over 100 cortisone injections. Had many organs removed.
Before I went to see him I had stopped all my supplements bc the capsules seemed to make me sicker. So with his course of treatment including all kinds of supplements in gel caps and tablets my allergies got worse! Last week I saw my family practioner and she tested me for alpha gal. It was sent to Mayo Clinic and I tested 105. The desults were faxed to him and today I had a skype conference. Basically he wanted to ignore the alpha gal for now, stating that I have 50 things wrong with me and we cant treat them all at the same time. I demanded to bave the thyroid medication changed to synthetic. He wanted me to come in for food allergy testing and I said that’s impossible I’m taking antihistamines left and right. So I’m supposed to start the powder ultra sustain and then reintroduce one food at a time. I told him I know there are fillers in the medications and that I am reacting to them as well. I am 5’1″ and weigh 88 lbs. Now I cannot eat anything! My bowels do not work unless I take milk of magnesia. I want to punch him in the face and make him listen to me!! Obviously he is not what he claims to be. So here I am and so thankful to God for finding this page and your post. I’m considering going to the Mayo Clinic. I am at a loss and do not know what to do. I am allergic to the water I shower with. Just a complete mess. I feel that I need tons of labs done and have a feeling there’s more to this than systemic candida.
I’ve had many tick bites over the course of my life. Went to the ER in 2012, they gave me doxycycline to be safe. Telling me there’s no way of knowing.
I’ve carried an epipen for years. Have had to use it. Have stayed away from dairy and red meats since the candida outbreak.
My concern is how much is related to candida and how much to alpha gal.
In 2009 my OBGYN gave me the blood glucose test and I passed out. I think I’ve had this a very long time….but un and misdiagnosed.
Thank you for your time reading this awful mess!!! I am overwhelmed, distraught, and more blind than ever!!! Any advice, resources, etc would be so greatly appreciated. God bless you!
Tammy, if you are taking capsules it is probably the gelatin in the capsule that is giving you problems.Gelatin comes from beef.My brother has had to change soap, detergents, etc.There are good butter substitutes and also the Almond Breeze almond/coconut milk is very good. He is using smoked turkey to season vegs. It is very time consuming reading every label, but it is worth it.He has not found any bread that does not bother him, but we are kind of new at this and still trying. Good Luck.
You should read the book- Grain Brain. It is written by a neurologist. The book talks about several things, but specifically how gluten can effect your body and mind. Have you tried a strict gluten free diet for at least six months? Try it….never know….may help. I pray that Jesus heals you.
I would find a good naturopathic physician in your area to work with. He/she will utilize holistic, natural ways to heal you instead of looking for a synthetic answer to everything. Good luck, blessings.
If you will contact the school of natural healing, David Christopher (snh.cc) will probably be able to help you with the leaky gut syndrome. It is a result of too much candida albicans. Dr. Shulze also has some info you can get also. good luck
Tammy, You sound Like me. I have been sick my whole life too. I have Multiple chemical sensitivity (MCS), celiac disease and now thanks to tick bites I have an alpha gal allergy. I am allergic to the world. I know it is hard and life seems impossible at times. Please research MCS and celiac disease as well as this alpha gal allergy. They seem to all go together in some strange way (for me anyway). Also you can contact Dr. Allen Lieberman in South Carolina at 843-572-1600 or http://www.coem.com He can help or at least find you someone that can help.
I almost cried when I read your reply.I had forgotten I had even posted here until I stumbled back onto this site.As I read the various comments I thought Oh, someone else named Shi.Yeah, I know. Really dumb, right? Anyway, I am glad for any help I may have given. What I have basically had to do is stop eating anything that is not basic, meaning basic as in lettuce, potatoes, NO anything that is processed or looks like it is produced with another product. The probiotic I am continuing to take is “GI Sustain”. It’s a powder. Tastes great in oatmeal. No gelatin capsules to worry about. Again, sorry I haven’t gotten back to this site until now. Keep us posted as to how you are doing.
I have severe asthma, and am allergic severely to Tylenol, cipro,, and codeine. They all cause horrible muscle contractures. It feels like a heart attack, then vomiting, etc. however, I now have a reaction to beef with horrible painful muscle contractures in my legs after consuming beef. Does this sound like Alpha Gal? I live in southeastern Missouri – tick central.
They are finding alpha gal is messing up our intestines. I can attest to that. I don’t eat gluten at all any more and I take probiotics. I’m now allergic to over 50 things. My numbers have come down twice in 3 years but I’ve had tick bites again and the numbers shot right back up again. I was told by my the specialist,I could possible eat grass fed high quality beef when my numbers get to 1..Looking forward to a filet in the near future!
“Grass fed” has nothing to do with it – Alpha Gal is a natural component of ALL mammals (other than primates).
so glad im not the only one with this problem! is there anyone else who developed this without being bit by a tick? i developed it last sept and had had no tick bites that summer
I’ve heard that it’s totally possible to be bit by a tick and not feel it. They have a natural anesthetic in their saliva, so say a tick attached on your back while you sleep, it could do it’s thing without you knowing.
I’ve had painful bites, but I only know about the bites I felt!
I had these symptoms as a child and suspect it started as pork-cat disease. It is much like alpha gal but symptoms have faster onset. I had never been allergic to dogs, just cows, cats, horses, (not mules) and pork but now I am allergic to my dog and suspect it is because of alpha-gal.
Yes. They found chiggers also can cause it and I bet we will keep finding more critters since all that needs to happen is that alpha gal is injected and some kind of immune reaction happens near it. Apparently some I fluids contain it as well and when I was a kid I had I’ve fluids and a reaction to morphine. I am guessing that May have been my trigger, but it could have been a hidden tick bite that fell off quickly or chiggers. I don’t know that anyone can avoid chiggers in the native areas, nor know exposure since they are so similar to mosquito bites.
John S., I see that you have had this allergy longer than I have been alive. Please check out my comment on this blog! I need your expertise.
My symptoms got worse a year after the first diagnosis. I went to a different allergy specialist and he said that I needed to work on my immune system. I learned a lot from this website about what to avoid. I eat whole foods, live a healthier lifestyle and do a moderate workout and it has made a big difference. Probiotics (not in a gelatin capsules) are very helpful too.
after 9 years since my first episode, I am not convinced that the allergy subsides.
This week I had a reaction to eating (a lot of) dairy – only the 2nd time I’ve had a reaction to dairy EVER, so I can’t say it’s getting better.
(ate most of a small tub of cottage cheese with little other food)
After having an anaphylactic reaction, taken by ambulance to ER, and recovering from bruised ribs from falling during my reaction. I saw an allergy DR. who tested me for alpha gal. He called me a few days later and told me not to eat any more meat from a mammal. I couldn’t believe it. I have been a meat and potatoes every meal guy since birth!! Needless to say my diet has drastically changed. I now carry an epi pen 24/7. DR will test again in 6 months to see what my numbers are. So wish I didn’t have this!!!!!
I was recently diagnosed with Alpha Gal after two years of mysterious hives around midnight. I do not have a reaction every time I eat mammal meet, but every time I’ve had the reaction, it was 6-7 hours after eating a hamburger, steak or pork chop. My number came back at 22.60 last week. Do others on this forum have a reaction every time, or like me, are your reactions intermittent? In June I had a very severe reaction that required hospitalization and now carry an Epipen.
I too had only a handful of reactions in the 5 years before diagnosis and I ate meat almost daily. However, over time my joints had slowly become inflamed and turned me into an “old lady”. Now with the diagnosis and the self education, I am getting better. Getting off the dairy brought the most noticeable results
Since 2010 I can not eat beef or pork every time I ate it I ended up in the ER. I just found out in 2016 that I have this alpha gal. I too feel like an old lady. My body still feels like it’s 80 years old . I have other food allergies too, to many to mention. All from tick bites ! Needless to say I don’t eat and meat from animals with hoofs. Now I know to cut out daily. So maybe now my body can start to heal. I also take 50 Billion Probioctics every day.. It has also effected my intestines .
I am recently diagnosed with Alpha Gal, but I am sure I have had it for years. I would occasionally(once/twice a year) have a late night episode with hives/sever stomach pain/vomiting. But, in the last few months, it was increasingly getting worse. I would wake up in the middle of the night, with hives, then chest pain would start & anaphylaxis. I had eaten a hamburger & minute steak each meal. I have always been a meat & potatoes type of cook..So, i couldn’t understand why only on various occasions i would get so sick. The Dr. said there was no answer for that. But, that each episode could get worse than the last. So, complete avoidance of mammal meats was the only answer. It has been a major lifestyle adjustment, but I feel so much better. Just curious, does anyone else have random bouts of pleurisy/chest pain? I have really had problems with this the last year. Wasn’t sure if it was a symptom of Alpha Gal?
If you only have the alpha gal allergy, you can still eat non-mammalian meat; I have eaten chicken, turkey, and fish, and I have the allergy. Mammal meat shouldn’t be consumed, but other meat should be fine.
Here is my rundown, I can eat Pork, such as pork chops and bacon, but Ham turns my stomach. I can’t eat Beef, Venison, Buffalo, Rabbit, Lamb…. or basically anything good. My diet consists of ALOT of chicken, but I only eat pork once in a while. But I never have any issues with pork. I am from NY, every doctor thinks I am lying about my allergy tho I was diagnosed in Nevada, where I used to live. Most doctors I have spoke to say “I have never heard of that allergy.”
I hope you are still watching your post and/or are figuring out how to improve your symptoms on your own. If you have not I will give you some advice. Any medications containing lactose and magnesium stearate or other animal byproducts INCLUDING your possible antacid and allergy medications are no longer tolerated by your digestive system. Find vegetarian and/or vegan sources for these medicines. You cannot even take an over the counter pain medicine such as ibuprofen without threat to your life, my friend. I understand as my alpha gal nearly killed me through my digestive issues. Some people are ok with the byproducts, some are not, and you sound like you are not. Good luck.
I hope everyone can see this because there is hope for eating a delicious steak, roast, pork chop or whatever. I have had this allergy for 43 years. It wasn’t until about 4 years ago that I figured it out because it became very frequent and I could put together the common denominator which was hamburger. I avoided hamburger and soon it went to Steak and pork. So for the last 3 to 4 years I have ate chicken which gets really old. I stated thinking about the range of the lone star tick and wondered if beef or pork wasn’t bitten, can I eat it. I ordered some all natural grass fed organic steak from Wyoming which is well outside the range of the lone star tick and with my epi-pen on standby, I ate a rib-eye for the first time in several years. No reaction! It is expensive to buy but, worth it every once in a while as a treat. I have had several steaks and prime rib roast and haven’t had a reaction yet. So, don’t give up on meat. do your research and find a good meat source outside of the range of the lone star tick.
This is very risky and not advised for individuals with alpha-gal allergy. I understand that you have been able to get away with it so far, but this allergy is very unpredictable and a reaction could happen after any ingestion of mammal meats. Please be safe and don’t eat mammal meats if you have alpha-gal allergy until you have tested negative and your allergist approves it.
Ok I have had this going on for 25+ years. For me only hamburger causes the reaction and it got progressively worse until I couldn’t eat it anymore. However steak or other cuts of beef haven’t been a problem. Just hamburger whether from the store or a restaurant. However I have found I can eat hamburger from farm raised, privately processed beef. I am now thinking it must be something added to commercially prepared hamburger.
I have had periodic allergic reactions over the past 8 years. The typical reaction would be intense burning and itching of my hands and feet along with welts all around my torso. Over the past two weeks I have 2 events with the last one the worse to date. During this reaction my lips were affected and my tongue swelled to the point I was not able to talk. I never lost my ability to swallow or breath. My wife did call 911 however the Benadryl did good enough job to keep me from needing an epipen injection.
I have not been tested for Alpha-gal but was wondering if these symptoms sound typical for Alpha-gal. I can say that I haven’t had a tick bite this year but have had a couple chigger bites in the last month. Chatham County, NC.
Has anyone had a positive ss-b blood test report? This is usually an indicator for sjogrens but mayo does not think I have it. Trying to figure out why the positive result. I have alpha gal. I also have enlarged lymphs that are unexplainable.
Has anyone else seen this develop into poly arthritis? I though I only reacted to beef and added venison into my diet a couple of years ago. Big mistake. It didn’t cause the major digestive issues but I started having weird symptoms that I did not connect until my ligaments weakened and tore in my hands. This lead the surgeon to suspect ra. The blood tests came back barely positive and then the joint pain started a few weeks later. I wondered about the beef thing, read about this and took all mammal stuff out of my diet and it went into remission 2 weeks later. I had a possible exposure event while traveling and boom! Back with the swollen joints. That just happened a couple days ago, so I’ll see if it goes back into remission right away or not. I saw some research that showed about 50 percent of people with Diagnosed full blown RA can manage it by removing all red meat and I am starting to think it may not simply be that red meat is pro inflammatory as suggested but that rather the RA cases that respond to removing it are actually from a red meat allergy that become more aggressive in a way similar to how gluten sensitivity can turn into celiac. I still do not know what part of red meat I am reacting to, but the delay makes me think it is indeed the alpha gal. For many years people just looked at me like I was nuts, but I knew. I knew. I don’t think this is a new ailment to humans, I think people suffered as chronically I’ll for thousands of years never making the link due to the delayed reaction. I only found it when red meat was too expensive and my nearly life long health issues vanished. I see many here have similar stories. So, anyone else see joint involvement?
Sorry for auto correct making things a little hard to read. Mobile.
I was just diagnosed today with Alph-Gal after years of hive reactions to what I thought was an unknown cause. 3 weeks ago, I ate a cheeseburger at my sons football game and 4hours later, I was rushed to the hospital with hives, difficulty breathing, swelling if the face and tongue. Talk about scary! So glad I now know what it is!
It is scary. I was diagnosed in 2011 after 6 trips in 4 months to the ER. My reactions were severe. My heart stopped on two different occasions. Hives, complete swelling from face to feet, lips, tongue & throat swelling, blood pressure dropping severely, anaphylaxic shock, & then unconsciousness. Very scary. In my case I must stay away from all derivatives from these animals. Best of luck to you. It is do-able dear. It’s hard at first, but very do-able.
i was diagnosed a year ago after the er for the 9th time could not stop the reaction. thank god for my allergist jeff leman in carbondale. he is an expert in it. you can be tested yearly to see if you are able to eat again, but i personally will never eat meat again, not taking the chance
Do you mean Carbondale Il? Because I live in Poplar Bluff and my son was diagnosed with this by a doctor in Cape and I would love a second opinion because she was not very nice and has not been good with follow up.
My husband was diagnosed last June and has not had a reaction In tell last night. We don’t understand why because he has not had any meat at all. I did fix moral mushrooms the last few evening could there be a connection.
Dr. Lehman is in Carbondale Il. he is my allergist and who diagnosed me. He is a great doctor
Aimee A – Did you get that 2nd opinion? I live in the metro of St. Louis and i use a local Allergist.
He is great!
My daughter was diagnosed in Sept 2013. We live in south St. Louis county and have a wonderful allergist who has now diagnosed two of my daughters with food allergies when no one else could figure out what was wrong with them.
Barb, are you in Cabondale Il. I too have this and want to do the blood test. Thanks
been allergic to red meat (beef, pork) since 2005, and now I cannot eat chicken, milk, eggs, yogurt either. Greek yogurt causes a life threatening reaction within 20 minutes, everything else 3-4 hours. I too swell, can’t breathe, pour copious amounts of sweat, and have BP so low I cannot stand up. Not to mention intestinal agony and all that accompanies it. Is seafood safe to eat? I haven’t dared try….trying to eat as a strict vegan is HARD!
An alpha-gal allergry would not cause the sypmtoms you describe in reaction to eating chicken or eggs. It is only present in mammal meat. You should go to a good allergist as soon as possible and get tested. You may have additional allergies and you cannot be safe until you know the source.
I too have just been diagnosed today with Alpha Gal.I have had “colon spasms” all my life an thought it was related to dairy allergies. For the last year the reactions had gotten worse.not only severe and cramps,profuse cold clammy sweats,weakness an passing out, I had hives an swelling of the throat an closure of the nasal passages. I then decided to go back to the Dr to be retested for foods an bingo positive Alpha Gal.No meats at all right now. Still unsure of what is next.
It depends on whether you already have an allergy to shellfish. I thought I was allergic to shellfish because I’m allergic to shrimp – but found out shrimp is a crustacean, not a shellfish, so that’s why I can eat crab, lobster,etc (but I only eat these rarely so don’t know if I have a sensitivity to them). When I ate a can of sardines the other night I had a reaction much like after eating shrimp – indigestion, very bad odor coming out of me and then stomach gripes and diarrhea. After checking to see if there had been any recalls on sardines I found there had been some recalls on the brand I had used because of krill being in the cans. Krill is a small crustacean that sardines eat, and sometimes just before harvesting they ate krill which later showed up in the cans. So I was actually having a crustacean reaction. I’ve been trying to stay clear of all mammal meat and dairy products for about three weeks and my GI symptoms have stopped but probably need to be even more scrupulous in what I eat until my body simmers down. I’m replying to you, Cathy, because your symptoms sound so much like mine. One symptom you didn’t mention that I had was the feeling like there was something inside me pushing my abdomen (around the beltline) outward. Weird feeling and after reading a lot about anaphylaxis it sounds like it may be an internal anaphylaxis. Hope you get your allergies under control.
I agree with Roxie – chicken/eggs won’t cause reaction. However… one reason it took me a long time to understand this allergy is that I got anaphylaxis from chicken sausage, and from some soups with chicken… turned out in both cases that the chicken was in a lamb or pork sausage casing… IE IT WASN’T THE CHICKEN. So double check the ingredients on your “chicken” and “egg” foods – they may contain unexpected dairy, gelatin, or some other mammal derived ingredients.
I am so glad you posted this. I had bought some turkey Italian sausages yesterday to grill. I saw your post and went to check the ingredients…..pork casing!!!! I was so aggravated! Thank you for saving me a trip to the ER though.
Also some chicken, even organic, is packaged in milk-based fluid or broth, so have to be careful about that too.
It also depneds on how it was cooked. If was cooked where mammal meats had been cooked then you still get mammal fat in your meal. Or was it cooked in butter? Was it cut with a knife that had also been used on mammal meat? You always have to worry about cross contamination. Don’t order sliced chicken or turkey meat unless they reserve that machine only for use of poultry.
A lot of chicken has beef liquid mixture injected under the skin for extra flavor. The packages do not have to have it on the label. You might call where you buy your chicken and ask.
I just saw an article about this and was blown away. I first had a reaction back in 1976 I was 16. Did not have breathing problems until later episodes. Took years for me to figure out what it was. Soon a sister and then another sister started. For years we did without red meat. Reactions got less severe as the years have gone by. Don’t have any now at 54. However one of my sisters has started again. Until today i didn’t know the cause.
No mammalian meat, so no! I’m a hunter too, it’s a bummer…
I am so happy to have found this foundation. I have had this allergy for 6 or 7 years now and despite trips to the allergists, have been told it was just a strange allergic reaction. I have tried many things to see what triggers it, even drinking wine with the meat to see if I broke out (which I didn’t with 10oz of wine strangely enough). Any information you can give me on this would be wonderful!
I have a question: As I live in Sweden and have this sort of meat allergy I wonder if this allergy can be caused by some other art of ticks or if this particular tick can be found also in Sweden? I have been bitten several times by ticks but I don’t know what kind of ticks we have in Sweden.
This allergy, while diagnostically stable, still remains early in the research life cycle. To date, we have heard of several hundred people from across the United States and abroad who have developed delayed hives, swelling and anaphylaxis 3-6 hours after eating mammalian meat. While there are resources to help in the US, it’s probably best to involve your allergist locally in Sweden, describe your condition and let them know that allergy tests are available in the US.
Note that there is a commercial, mammalian meat allergy test available through ViracorIBT labs. In the US the test costs is around $37.50. It’s likely best to test for the allergy presence and then as needed, plan for your dietary restrictions.
Thank you for your prompt answer. I have been in contact with the allergy department at my local hospital and they have taken blood samples to analyse at the Karolinska Sjukhuset in Stockholm. They are doing research on this type of allergy. So I hope they will be able to help me. Of course I will not eat any mammalian meat any more – I eat turkey and chicken instead and that is perfectly OK for me. It started already in 2009 when I had these reactions after having eaten pork and sheep-meat. But I could still eat meat from ox after that – until some weeks ago when I got the same reaction. That was why I went to see the allergy department once more and my doctor told me about this possible cause. So maybe it is more types of ticks that can cause this. The reason I mailed you was that I was very curious of your findings as to the type of ticks etc.
…if I can help in some way I will certainly be glad to. I will definitly follow the future results of this research – also on your website.
You’ve made great progress already with the modifications to your diet, doing research and involving your doctors. Now, back to your question about ticks outside the U.S. First, it’s possible that if you’ve travelled here and been bitten that it was contracted here. There is lots of testimonial evidence linking Alpha-Gal to the Lone Star Stick and south eastern U.S, in particular. Since the condition is being found outside our region, it’s unclear if the exposures are solely the result of travel here, if the Lone Star tick is more widespread than originally thought or if additional species endemic to your region/travels are to blame. Additional research is needed to better understand and prepare us for this food allergy!
The NIH has recently published the following article. With regard to ticks, I’ve found the following site useful: http://www.tickinfo.com.
Please keep us posted with your diagnosis, findings and handling of the Alpha-Gal allergy. We’ll certainly do the same.
I have now had some results to the tests I made at the allergy clinic at the hospital here in Lund. The blood tests showed allergy antibodies against beef, pork, horse meat, mutton, venison and rabbit meat but no allergy antibodies against turkey or chicken meat. My doctor wrote that as it could be related to tick bites he has forwarded a sample to the Karolinska sjukhuset in Stockholm. So maybe we also have a sort of tick in Sweden that can cause this. I will come back to you with the result from them as soon as I have them.
Marianne, Yes the ticks in Sweden can give you the reaction to meat. The team at Karolinska hospital is great. As a matter of fact, they are the ones who discovered the actual presence of alpha-gal in the gut of our local tick Ixodes ricinus. Also found in the Lone Star tick…
I was diagnosed in the summer of 2011 after 6 trips to the ER in 4 months. I would start out in hives, throat, tongue, and full body swelling. I would go unconscious with my blood pressure dropping til unreadable. I was said to have died on two different occasions. I was horrified. The hospital staff looked at me strangely saying that I had just dehydrated causing my unconsciousness. I have horror stories of how they left me untreated & unattended letting me go into full blown anaphylaxis shock! I’m so glad this site is here for us. I only wish my local hospital were made aware of this in my area. My allergist was appalled by how they deglected me at the ER.
I’ve just been notified by my alergist that I tested positive for this allergy. I understand the listed red meat(beef, pork and Lamb)being off th list to eat, but what about wild game (Deer (Whitetail, Mule, Elk), Buffalo, Mountain sheep and goats, wild African game, snakes, etc.? This may have already been published, just haven’t found it yet. As a hunter this is devistating as I believe in only killing what you intend to eat. If these go of the can eat list, then I (as well as other hunters) will have to make adjustments.
I was diagnosed with this allergy 3 years ago, I have had it for at least 5. I did fine with venison meat until last night, when I had the worst reaction to date – ER treated me like a drug addict, until we educated them on the allergy. We were not there for diagnosis, just for treatment. I had already maxed out on Benadryl, so had Epi and IV steroids, felt like an elephant was on my chest. 5th known reaction, 1st time with venison. We process our own deer, so we know what goes in our food. Meet with my doctor on Friday to get her opinion, I was the first person in my town diagnosed with this allergy, people still look at me weird.
Have you had any bad reactions
My allergist says the rule of thumb is NOTHING ON THE HOOF so the wild game you speak of is a problem.
My husband fixed venison and I had anaphylaxis.
When it comes to meat- if it flies or swims I can eat it with mo problem.
Hope this helps.
tHIS IS ALL NEW TO ME, pLEASE SHARE WHAT EVER INFORMATION YOU HAVE
MAMMALS are the culprits, so no matter what the source, no mammalian meat.
Gary, I was told by my doctor no non-primate mammals: so no deer, rabbit, antilope, etc. But snakes, gator and anything that flys are good to go.
Gary, I too am a hunter, outdoors-man, and have the same philosophy about the taking of game. However, I also feel dedicated to provide for my family. We need the meat. I enjoy the preparation, smoking the meat, and all the family time that comes with that type of work.
I say don’t allow thing to change. Just an inconvenience.
Florida needs some serious Python hunters – I think it is open season as they try to control/eliminate them, and they are huge! Smoked snake? …and I don’t mean to make light of it! It is a serious suggestion good luck
They are mammals. You can’t eat them either with exception to snake-not a mammal
There are articles from the University of VA about Sweden’s ticks causing alpha gal.
My husband has always had a hard time with tick bites. The bite site would swell and cause a sore bump at the site for months. Then came the itching and swelling when he would eat beef. Then he got pancreatitis and is now an insulin dependant diabetic. After all of this he started reacting the same when he would eat pork. So we went to an allergist and he is highly allergic to beef and pork and a multitude of other foods but these are the ones that are the most difficult to deal with.
My question is would these tick bite induced allergies cause the pancreatitis?
I know that must be very frustrating! Concerning whether the tick bite-induced allergies could cause the pancreatitis, I have no idea. That would be an excellent question for his allergist, though. You may also want to look at the UVA site – they state the following regarding medications and the possible interactions / reactions:
“Are there any medications that contain alpha-gal?
Cetuximab, a cancer drug, contains alpha-gal and has caused reactions in many people with this allergy. We know that at least one pancreatic enzyme replacement drug (Creon 10) contains alpha-gal. In addition, there are two intravenous fluid replacement products, gelofusine and haemaccel, that are known to contain alpha-gal. Neither of these IV fluid replacement products are currently used in the United States…”
Your medications should be reviewed as carefully as your food choices! Best to do your homework and discuss the findings with your allergist.
I have had this swelling to my airway since vacationing in Nashville 3 years ago. My ENT had no clue why, but it has stayed steady ever since. Since April I have had so many ER visits due to loss of airway, and extreme mental fog. I had to get IV dexamethasone at ER and at home. Then taking 1 pill of Tamazapam sent me back to the ER. I recently learned it is coated with gelatin.
Yes,alpha gal is an enzyme and that is the pancreas’s function.Avoid all red meat,grain,beans and broccoli.Doctors don’t know much about this allergy so study and study to make life as easy as possible.It’s been slowly killing me for 30 years.
Mark, why do you say to avoid grain, beans and broccoli? I’ve had this allergy for seven years but have never reacted to these foods, only to mammal meat.
Sorry Mark, you are off base. You can study and study, but you will be studying the work of the scientists who setup and support this forum… the ones whe actually discovered the allergy! …Alpha Galactose is NOT an enzyme, and it is not produced in the human body. It is carbohydrate (that’s why the word ends in —ose the naming convention for sugars and carbs) So beans and broccoli have nothing to do with this allergy.
I have one bad reaction just bad rash.Was told after test I was positive but have been eating everything and haven’t had any more problems.pork makes me itch but can take a Benadryl after wards.and no problem.are they mild cases of AG.THANKS
This is kind of an abstract question – with your husband being insulin dependent and having the alpha-gal allergy, has he ever had allergic reactions when NOT eating mammal meat? Insulin tends to be derived from pork…
I’ve been suffering with what I believe to be the alpha-gal allergy for some time now and it’s had my doctors stumped. I decided to get google happy and discovered the works of the University of Virginia.
I took my research along to my last appointment and my doctor now has some serious ‘food for thought’ as well as some more research himself.
I am based in the UK and I can’t seem to find any cases of alpha-gal online for anyone outside of the US. As far as I know, I’ve never been bitten by a tick so I can only assume that the meat I have eaten when experiencing the reaction was bitten, causing the alpha-gal reaction.
I am due to have a blood test but we’re really not sure that our labs will know how to test for the reaction and, as I can often eat lean read meats without a reaction, it doesn’t seem that skin tests will pick up an allergy either. It does seem my reactions flare when I eat the fat of red meat though so I am going back to the allergy clinic in December armed with fatty gammon, lamb and steak so we can see what happens!
Do you know of any confirmed cases of the alpha-gal allergy in the UK? Also, do you have any other credible medical research papers produced by anyone other than the University of Virginia to corroborate their findings?
Any information you can share will be greatly appreciated!
First of all our hearts extend to you! We’re glad you found us and the researchers at the UVA. This condition has proven difficult to diagnose, even here. I can only imagine the additional challenges you face in the UK.
We’ve had some recent interest from Europe asking the same sorts of questions. Please monitor our Support page to keep up-to-date with of our latest communications.
Clearly, people outside of America are being diagnosed with this condition daily. As far as proper testing goes, the labs outside of the US are making great strides to properly test for and identify this potentially life-threatening allergy. While it remains difficult to confirm the exact source and timing, especially outside the US, all the research points to exposure to tick bite occurring here domestically. This UCB link describes some of the latest finding to be presented in the upcoming 2012 World Allergy Organization International Scientific Conference.
Thanks so much for the info. Now I’ve found you, I’ll stay in touch and let you know what happens with my tests and results. No one seems to know what I’m talking about here, it’s very frustrating!!
Hi Alison. we live in Scotland and my son has the allergy. He is under the immunology department in Aberdeen who have seen one other case. He has never travelled to the USA, but we live rurally and have he has been biten by a deer tick. Hope this helps
There are hundreds (possibly thousands as it is not a reportable disease) of people in Australia with alpha-Gal allergy – major suspect is ticks – any tick can give us alpha-Gal. Some ticks are more aggressive in their pursuit of a host than others. I have alpha-Gal allergy.
Sweden has a few people on the alpha-Gal global Facebook page – go to https://www.facebook.com/groups/alphagal/
This is a fantastic support group for people with alpha-Gal.
The more people who join, the more we learn.
I am in London uk and have confirmed diagnosis for alpha-gal allergy. Unfortunately I had to send samples to usa for testing.
I moved from Calif. to Africa back in the 70’s. Was vegitarian while in Calif. so not sure if had the Alpha Gal and didn’t know, but at meat in Africa and had reaction. By the 80’s I was living in the Southern United States no longer alergic, so thought it was in my head. Eat meat for years and then in 2008 ended up in the emergency room. Discovered why in 2012. The point to all this is to say possible in other countries besides the US.
So glad to see that you have formed this foundation. I have had Alpha-Gal for about 1 year. The physician at my emergency department had never heard of Alpha-Gal but my allergist knew exactly what was going on. Please get the word out and educate emergency personnel about AG.
I have just now received the answer to the analysis at the Karolinska hospital in Stockholm. I have allergy antibodies against alpha-galactose so my doctor think it is possible that there is a connection to tick bites. I will now contact the doctor at the Karolinska and offer to help in the researching if I can do anyting. I will come back with further news as soon as I have some.
I have a small question to which I have not yet received any answer here in Sweden: Is there any other food stuff that could contain Alpha-Gal? I mean – it is OK if you know that you cannot eat any mammalian meat but is there anything else to watch out for?
We’re so sorry to hear about your recent diagnosis. Awareness to the allergy is the first step towards finding solutions and eliminating the symptoms.
Common (often more subtle) reactions are from dishes that use animal fats, such as butter and bacon. While many people are less sensitive to dairy products and these flavor enhancers, it’s probably best to avoid them, entirely.
Also be aware that Alpha-Gal has been found in several medications (discussed above).
I would like to send my best Christmas greetings to all of you who have this kind of allergy! In Sweden the Christmas ham is the most important dish but I have already tasted a “turkey ham” – made of turkey meat and it was delicious and tasted almost as a “real” ham – so there are Christmas dishes even for us! Hope all of you will stay well in Christmas and I also wish you will have a Happy New Year!
Thanks so much for the holiday post. Is there any chance we could request that recipe? Our audience would certainly appreciate your allergy friendly alternative, particularly for a Swedish favorite, seasonal dish. Send photos if possible. We’d love to get a taste of your country’s cuisine!
I don’t have a special recipe for this “ham” but I bought it ready cooked from a company called Ingelsta Kalkon – http://www.ingelstakalkon.se – and then I made a “topping” of mustard, syrup and egg yolk and then I strewed bread crumbs over it and put it in 225 degrees C for about 15 minutes to make a brownish sort of topping.
This company is the only one in Sweden making turkey food such as sausages, minced meat, bacon etc. from turkey but I have seen that there are several companies in the US making the same. This type of allergy is very rare in Sweden – I heard from a professor that she had only met about 35 people with this allergy so we have a lot to learn from you, I think.
Marrianne, My son is also allergic to eggs, chicken,milk. The only meat he can eat is fish (no tuna though)and shellfish. He had an allergy test and is allergic to other foods rated from 2-4, 4 being worst allergic effects. He is also allergic to the live animals. I have a saying, If it has fur he’s allergic to it-alive or cooked. – Have a pin-picked allergy test. Keep the print-out of the results posted. After several years he had another test and found more allergens but a few (hazelnut and a veggie) in previous test were down to zero. His new results included potatoes, garlic and onions!
He stays away from the items listed 3’s and 4’s but have found it to be a numbers game. He can eat cheese one day with an egg baked in a dish. If he has cheese-tested at 2, egg-a 2, potatoes a 3 and around dogs or cats he has gone over and suffers. Anything from 1-2 is used sparingly, 3-4 is completely avoided. You have to go by what works for you though. – I was a vegan when he was diagnosed, which made it easier for him to adjust. One of the recipe go-to books is Dr. John McDougall’s book, The McDougall Program. 12 days to dynamic health Hope this helps.
I was diagnosed in September only after a lab tech friend saw the test ordered and because she had not drawn it before, looked it up on the internet and found that my symptoms sounded like those mentioned, exp. after I had hives after consuming a hamburger steak 3-4 hours earlier. I was very sick all summer after having 6 tick bites, all huge and red and several cm. in diameter. I took mammal out of my diet as soon as I heard about alpha-gal and have NOT HAD ANY SYMPTOMS SINCE!!!!!!!!!
I carry an EpiPen because we never know what is in food prepared by others. Eating out is not fun anymore knowing that it could result in a resp. situation for me. I hope laymen will heed advice and that restaurants will keep the food they prepare free from contamination of these meats that affect us.
I’m sorry about your alpha-gal allergy diagnosis but very happy that you’ve eliminated your symptoms! Eating out is definitely a huge challenge to anyone with this allergy, and getting the word out to those in the food service industry will help tremendously, as most have never heard of it.
Hi all…I’m a newly diagnosed club member. Yay me, right ? Like many of you I am happy to at least have put the mystery to bed. For what its worth, I am pretty sure I got mine from chiggers. Chiggers seriously s&%k. That’s it…just saying hello.
We’re glad you’re making progress and found us. The contributing researchers recognize your testimonial and are responding accordingly. The ACAAI has recently published findings that suggest that other ticks are also likely culprits, ACAAI: Much of Alpha-Gal Sensitivity Due to Lone Star Tick. The leaders at the UVA offer the following, “When certain people are bitten by ticks or chiggers, the bite appears to set off a chain of reactions in the body.” Our Basics page offers very similar text. We’ll continue to do our very best to keep you, the interested and the similarly afflicted up to date with the latest findings!
I was diagnosed with Alpha Gal in March 2012. Can I still give blood?
The Alpha-Gal Allergy Foundation would like to extend our condolences for your recent diagnosis. Yes, you can still donate blood. There is nothing that supports that the Alpha-Gal allergy can be shared through blood transfusions. Additionally, there are no restrictions that would prevent you from making blood donations.
That said, it reflects well on your character, that when faced with this personal news that your attention focuses on the well-being others.
Is there a program to volunteer for further research (tests)…? I have never had a reaction to pork but only red meat and it has never been severe enough for me to go to the ER or use my epiphen. Therefore, I may be a good candidate for further testing.
You may want to contact Dr. Thomas Platts-Mills (firstname.lastname@example.org) directly. He and his colleagues at UVA are the Alpha-Gal research pioneers that can best address that question.
I am opposite pork is what makes me break out and itch. But a benedryl afterwards no problem.but I did test positive.
I have been turned away by the Red Cross because of the condition. Maybe it was just ignorance on the part of the individual that I spoke with, but I was told during a recent blood drive, that until more reasearch was carried out, I would not be a candidate for donation. I have had this allergy for 10+ years and was just diagnosed about 2 years ago. I have stopped all mammal products (including dairy) and have not had a reaction since. The last reaction was extremely severe. I actually lost consciousness and was rushed to the ER. Any of you who even think you may have this condition, PLEASE take it seriously and get checked out by an allergist. The threshold level for the enzyme is .35. My number came in at 23.6!!
I live in New Jersey and also have had a hard time with this allergy. I was in the wood one day looking for a nice little place to go hunting. I must have rubbed up against some Ferns that were infested with chiggers, ever since then I have been allergic to beef and pork. I really believe chiggers as well as the Lone Star tick carry this disease. I was diagnosed with a meat allergy last year after also eating a bowl of chili that afternoon I was rushed to the hospital with swelling of the face and my body covered in hives. Thank God we finally figured out what was the cause. I hope it is temporary but for now I will not eat any red meat or pork…
Hello: it’s more likely that you were bitten by lone star larvae, known as seed ticks. I’ve read that seed ticks are virtually indistinguishable from what we grew up calling “chiggers”, except by experts with a microscope. Good luck with managing your allergy.
I am also a hunter. I live in PA but spend weekends on Eastern Shore of Maryland. I was diagnosed last Fall after several bouts of hives. I too was bitten by what I thought were chiggers and within a month was experiencing symptoms. Thank goodness I wrote down what I had eaten and my allergist recognized it as alpha-gal immediately and did the test.
I have been bitten numerous time by chiggers, I live in Arkansas and I love to be outside. I started very suddenly like overnight with this allergy, I had a plate of spaghetti. Since then I cannot eat any mammal meat, I can eat chicken, turkey and fish. At the beginning I could eat bacon but now I cannot. The reaction is stomach cramps, vomiting(a blessing in disguise) and severe hives. It start about half hour after eating and anywhere from 2 to 3 hours less if I vomit. I learned the name this year and since them I have done research on it. There is a natural formula that is very good called Lucidia. I don’t like Benadryl. I think that this product along with Vitamin C is better with no side effects.
Does this allergy apply to other game meats such as rabbit, squirrel, deer, etc.?
Thanks for your e-mail. Yes, the listed game are all mammals. While rabbit, squirrel and deer are not as often discussed, folks with the Alpha-Gal allergy will likely be just as sensitive to these meats as to beef, mutton and pork. Any favorite venison, squirrel or rabbit meat recipes (“coniglio alla cacciatora”, for our Italian friends) will introduce the same risks.
Please review Marianne N.’s holiday post (above) for her recently discovered turkey ham alternative for one her country’s favorite seasonal dish.
I guess I get to join the club. I haven’t officially been diagnosed yet but once hearing about Alpha-Gal it wasn’t hard to figure out what was going on.
It started off just being allergic to fast food processed beef, then cheap store bought ground beef, now it seems to be anything with processed beef in it. I can still handle steaks and roast, no issues with pork or any other type of meat yet.
I’m wondering if the condition gets worse over time as mine seems to be doing, I’ve been thinking it was something that goes into the meat while it’s being processed rather than something naturally in it since I do fine with cuts of beef.
Either way, I’d love to help find a cure because I love hamburgers and seriously miss being able to go to a burger joint and not worry about a possible ER visit after.
My allergy started in much the same way and yes, it does get worse. At first I thought it was just bad burgers at McD’s and it didn’t happen every time. Then it progressed to unbelievable hives, difficulty breathing and horrible pain in the center of my chest…pure misery! My 2 sons also have the allergy (my daughter and husband have been spared even though they have had these tick bites as well). One of my sons keeps asking if there’s going to be a cure. I sure hope so because I would LOVE to eat a good steak again!
I was doing the same exact thing, blaming lower quality cuts of beef on my reactions (hives and cramps). I finally came to my own conclusions that I was allergic to red meat and stopped eating beef completely. About two years ago a local news station reported about the lone star tick and how it can create allergic reactions after eating meat. This makes sense, I’m in the National Guard and I have spent a lot of time in the tick infested woods around Ft Dix. It’s been 7 years, but my allergy has not progressed outside of beef, I don’t consume a lot of pork or lamb as it is, but I don’t react after eating them. I do not plan on experimenting with Bison or Venison.
Did you ever find out if it gets worse.mine is a lot like yours
Dustyn, I believe you are allegic to some chemical they put in processed meat. You probably be able to eat an hamberger made with organic beef, because if you had alphagal like I do you cannot eat any and I mean ANY mammal meat and with time it gets a lot worst. Try organic beef and see….
Sadly, this disease can get worse…a lot worse. My husband has it. He was mildly miserable for 10 years and didn’t know what it was. Then in July of 2015, he found another tick. What we know now, is that bite 1 can make you “allergic” to mammal meat and things like cheese and milkt that come from them. Bite 1 does this to some ppl. But bite 2 is apparently the kiss of death. On Ovtober 1st of 2015, he took a bite of my daughter’s hamburger and 6 hours later I was uncapping his epi pen that his formerly befuddled allergist had prescribed “just in case”. As an EMT of 9 years, I’ve never seen anaphylaxis of this magnitude. That night though he had a symptom he’d never had before…the bottoms of his feet swelled til he couldn’t walk…not to mention his tongue. Back to the allergist the following day. Long story short….
My husband is now anaphylactic allergic to all red/mammal meat and to ALL by-products related…cheese, milk, gelatin, marshmallows…did you know Planters coats some of their nuts in gelatin?!!!! He can’t even take an herbal supplement if it’s in a gelcap! We read everything we eat. Everything. We can’t screw up.
ALSO!!!! Restaurants….stop eating out unless you eat Asian. Cross contamination on grills and in fryers can cause an epi stick. Breakfast joints are the worst. You can’t trust French fries bc most places drop their bacon in the dryer to warm it up. We have 6 restaurants that we trust. Traveling is now mildly terrifying.
AND….it’s getting worse. The same fatigue we were back and forth to doc’s about is back. The same rising blood pressure is back. The aching. The mental fatigue.
I guess fortunately for me, my allergist found that I have an alpha gal allergy in December 2012. I can guarantee that I have had this allergy for over 10 years as I have had the same reactions and many trips to the ER and family physician . I know that there was at least 2-3 year periods during this time that I was symptom free. I had a tick embedded in my back in June and by July, the allergic reactions came back in full force and were the worst I had ever experienced! Thank heavens no anaphylaxis, yet.
It most definately does grow worse over time if you don’t stop eating meat. I progressed from slight stomach pain / hives to massive stomach pain and passing out before we figured out what was going on. This was over the course of many years however and there’s the possibility that I was bit again causing the increase in reaction.
I’d be very careful, I had a couple episode that could have been deadly.
My son was just diagnosed with this allergy. I can say that I was truly blessed to have a wonderful allergist who immedaitely tested for this allergy. She listented to what happened and after about five minutes said I think I know what is wrong and we need to test now for this. Dr. Katherine Liddle in Anderson, SC thank you so much!!
Wow! My daughter just saw Dr. Liddle today and she is being tested. She has been sick off and on for almost 2 1/2 years and we have seen lots of doctors. This is the first time I have ever heard of Alpha-Gal. I really hope we get some answers.
Really liked what you had to say in your post, Alpha-Gal Allergy Awareness, thanks for the good read!
Hi again all. Here’s a great post about Alpha-Gal http://afoodlife.com/2013/02/tick-bite-causes-meat-allergy-alpha-gal-on-the-rise/ according to here, it may go away in 3-5 years which is much better than the “maybe 15?” my allergist said.
I was diagnosed with this 3 years ago from a tick bite I got in North Carolina, and after a year and a half my symptoms went away. I am happily eating beef again. Had a small reaction last spring after I had been bite by a tick in here in Southern Illinois. But nothing since!!
We love to hear about our your success stories. It provides hope for those more seriously afflicted! Were you able to start with small amounts and then increase portions/frequency over time? Any additional details would be helpful.
It is good to hear your symptoms have subsided. Can you give us an update currently? Do you know what your test levels were? Did you do anything different during the time you had it other than avoid the meat? Thanks.
I was diagnosed a couple of months ago. Thankfully, my allergy doctor was well aware of this allergy and sent me for the test promptly. (Most other medical professionals around here have never heard of it. I had to educate my GP about this allergy.) First lab I went to (Lab Corp) had never heard of the test, and was going to charge me a fortune, claiming my insurance (Blue Cross) didn’t cover it. Glad I went to another lab (Quest) who took care of it no problem. Insurance did cover it. Test came back positive, so I have cut out mammalian meat. Have discovered turkey chili is pretty good! However, I have had a couple of milder reactions of late, which I can only put down to eating more dairy than normal. Can larger amounts of milk and/or cheese cause a reaction when a smaller amount does not?
Yes, it can because dairy is from mammal. I have the same problem with cheese because of the rennet. I am allergic to milk anyway so now I have to use nut milk.
My allergy started in much the same way and yes, it does get worse. At first I thought it was just bad burgers at McD’s and it didn’t happen every time. Then it progressed to unbelievable hives, difficulty breathing and horrible pain in the center of my chest…pure misery! My 2 sons also have the allergy (my daughter and husband have been spared even though they have had these tick bites as well). One of my sons keeps asking if there’s going to be a cure. I sure hope so because I would LOVE to eat a good steak again!
My husband has this allergy. He has had this horrible allergy for over ten years. He finally was diagnosed in 2012. It is horrible. He would have full anaphylaxis and even had a heart attack during one episode. I sure hope there will be treatment for this soon because I know he is missing meat dinners. We do the best we can in the kitchen but there are only so many ways to cook chicken, turkey and fish.
Well I’m new to this subject but I’m currently waiting on results from the lab to confirm what I’m pretty sure I already know. I have had symptoms for 2 years and it has really puzzled my allergist. I have gotten hives around once or twice per week for 2 years and a year ago I went into anaphylactic shock at a theme park with my 3 children. Security had to watch them while I was hauled off in an ambulance. I began seeing an allergist and was tested for a lot of stuff. They discovered that I was allergic to lamb but here’s what is puzzling…I’ve never eaten it so they have never been able to pinpoint what causes my reactions. Then a week and a half ago I ate at a hospital cafeteria while visiting a patient there and went into anaphylactic shock again. Luckily this time I had an Epipen and used it. Gradually the symptoms were relieved but all day the next day I had horrific stomach symptoms. I’ve even been to the ER for Gi/rectal bleeding. I was so desperate I started doing my own investigating and found information on the alpha-gal allergy. It really made sense. I live deep in the east TN wooded area and I have been bitten by ticks and chiggers my entire life. In fact I was bitten again around 4 days before this last serious reaction. So I called my allergist and told him about what I had found. He ordered a lab for me right away and I had my blood drawn last Friday. The hospital had a hard time trying to find out how to label the test and figuring out where to send it. I think they finally figured it out but that really makes me nervous. They stated that they had never heard of it. Not very comforting. So it’s been 6 days and I’m waiting. I just wanted to know if any alpha- gal allergy sufferers think I could be right about thinking I have this allergy. Can anyone give me advice?
You’re taking the right steps, so far. Aside from getting yourself properly diagnosed, you’re becoming aware of possible linkages between your food choices and these outbreaks. If indeed you have the Alpha-Gal allergy, you’ll be better equipped to manage your heath by avoiding the triggers that cause these issues. Many find that restaurants are the biggest on-going challenge because the ingredients aren’t always listed. Beef broth, butter, bacon drippings, etc. while flavorful, may not be items that your body can safely process. Aside from finding sites like ours and the community we represent, you want to start exploring allergy-safer options like poultry, fish and vegan dishes. We’re here to help!
Hi fellow alpha gal peeps. We have a facebook page if anyone here is interested in checking us out. There are more than 150 members now on our alpha gal page and we are there to exchange info and give emotional support to our fellow sufferers. Join us!!
Hi! I actually just found about about this disorder last night from a co-worker who has it. I have had over the past several years bouts of severe stomach pain, nausea and even vomiting, accompanies by lots of bloating. It is after eating larger amounts of food, but I have not been able to isolate. I do not eat meat often, but the last two were after a hamburger and then BBQ. The onset was several hours and the worst part was the next day, lingering for yet another. Does anyone have symptoms which present like this? No hives or swelling, but pain and nausea is main symptom? Anyone have anything like this? I do plan to be tested
Hello! Your symptoms sound a bit like mine. In September of 2015, I developed sores all over the inside of my mouth and my dentist and periodontist didn’t know why, they would get better and worse seemingly randomly. I also became lethargic and would fall asleep nearly everywhere, almost once while stopped at a traffic light. My joints ached horribly, sometimes worse than other times, and during particularly painful “attacks” I would be freezing cold. I could barely make it to work and would sleep constantly when not there. I hadn’t put together that I would start feeling badly 8-10 hours after eating beef, and I would feel my absolute worst 3-4 days after eating the beef. I never had any tummy issues. I was diagnosed with fibromyalgia in October of 2015 and finally I had an allergy test in December of 2015 and showed as an allergy to beef and dairy. I stopped eating beef and continued eating a small amount of dairy. During Christmas I was playing cards with two of my friends when one of them told me he’d read a Department of Conservation article about a “tick disease in this area” I should look into, and I began finding out about alpha gal. I began logging what I ate and realized that when I’d eat dairy, especially large amounts, I’d get a flare up of those sores in my mouth and the aches in the days following. I went back to my allergist last week who told me no more dairy and tested me for alpha gal at my request. I came back testing positive with a number of 82. Last week I accidently ate something that had a small amount of butter in it and my hands and feet swelled up. I currently can eat pork without a reaction, but now I’m afraid to and will likely eliminate it from my diet for safety’s sake. As of today, I have an epi pen and have had to educate my coworkers and family on this. I have no idea where/what I got this from (there are ticks and chiggers where I live, so both are possible.) I’ve begun making almost everything I eat at home because then I know what goes into it. It really stinks in social situations because I have to eat before I go to parties (so I don’t get hungry and tempted) and I can’t have a piece of cake or whatever. It makes me feel left out, but I’d rather feel left out than sick.
Good luck folks, hang in there! Groups like this have REALLY helped.
Wendi, I have this too…and all I can say is that no one here in Arkansas has heard of it either. I am from Canada originally and there is no chiggers there but here it’s chiggers paradise. I love the outside and about 5 years ago I started like overnight with terrible stomach cramps and hives. There are ticks here too but I was fortunate not to be bitten by them. The chiggers is another matter. I believe that chiggers did this to me. I have found an anti-histimine that is natural called Lucidia I also take Vitamin C with this. This combination really help.
I’ve had alpha-gal for over ten years, 8 of which I had no idea of what was causing my breakouts. Ironically I live 5 minutes from UVA and just today learned of they’re research and what the cause was. What a relief to finally have an answer to the riddle. Also ironically I was raised and still live on a cattle farm so no steaks has been torturous. Ive emailed the lead Doctor in charge of the research to see if they needed a guinea pig but so far no response.
I’ve been dealing with this for 33 years, and discovered the alpha-gal connection after reading about author John Grisham’s affliction with this same problem. I’ve been to over 5 different allergist since contracting this, and gave up on them. Don’t you think at least one of them would’ve contacted me upon this discovery? Not to rant too much, but this is part of the problem with our current medical care. I’ve learned to live with this, and I’m at the point where it’s no big deal, but I’d certainly be up for a cure! There are so many more non-mammal meat options today, which makes food choices easier. Don’t you just cringe every time someone says “allergic to beef and pork? I’d just die”! PK – an alpha-gal pro
Yes I have terrible pain right below my ribcage in the middle. Feels like I’ve been stabbed. No trouble breathing but I can’t move or the pain gets unbearable. I have to take mega pain killer to survive!
I had an allergic reaction 10 years ago and finally figured out it was beef causing the problem. No Doctor could tell me what was going on. After about 5 years I slowly reintroduced beef and was fine. About 2 months ago I must have gotten bitten again because now I am having terrible reactions and not just beef but pork, milk, butter and all mammal products. Ugh! Hope I can stick it out another 5 years…
Wow! Finally solved the mystery! I have had this allergy for atleast ten years. 6-7 of those years were filled with many trips to the ER due to not knowing what was causing the reactions. With such a delayed reaction it was hard to pin point the cause. Finally I cut out all beef , then pork and even venison. After all that I have been reaction free for 3 years roughly. A side note I had Rocky Mountain Spotted tick fever as a child..
I have had symptoms since 2007. I had one ER visit and was told it was exercise induced anaphylaxis. Finally my allergist went to a seminar and heard about this. (She didn’t believe me when I told her beef. She wanted too, but it just didn’t fit the profile.) If you find beef or post tastes metallic, that is one sign I have had. (I think it is my body telling me to just stop.)
I can eat SMALL amounts of beef (one bite) and a little more pork. I don’t test the threshold. It’s not worth it.
What I didn’t know is dairy can also be included and that explains more to me than I realized. Just this weekend I found it didn’t agree with me.
Luckily, my boyfriend can’t eat dairy, so we make a multitude of dishes with goat and sheep cheeses. There are options and just get creative.
Good luck and be safe.
Hi Sarah, I was diagnosed immediately after my first and only trip to the ER due to my informed allergist. I too got the metallic taste in my mouth. You are the first person I have heard mention it. I stopped eating mammal meat as soon as the alpha-gal results and I have been fine ever since.
Hello, although we live in Houston, TX, two years ago my husband was in the woods in central Missouri and was bitten by many chiggers. Within two weeks he started having progressively worse reactions and we narrowed it down to pork and beef. His last reaction was hives all over, hard time breathing and sick to his stomach. We had to call 911. He’s not eaten meat from mammals since then. Although our doc didn’t know the cause he did give us epi-pens just in case. We rarely eat out now as it is just too scary.
I have the same problem and I eat at the same places all the time because they understand about the beef,pork allergy. Hobbit Cafe, Thai Bistro on 59, Ruggles Green, Nordstrom at the Galleria and Escalantes. I have never been sick after eating these places once I realized what was making me sick. I always give clear instructions for the chicken or fish to be cooked away from the beef and for only clean tongs to be used to pick up the meat. I cut it myself at the table to make sure there isn’t anything on a knife they might use. Watch out for cheese and look for the word rennet. It’s almost always animal byproduct used as flavoring. Just FYI.
Well, I am new to all of this. I was just diagnosed on a scratch and intradermal injection test (the allergist performed both ways) yesterday. I now have to have the blood test done, I think for a baseline reading; but he indicated the other tests definitely showed an allergy to Beef and Pork. So far my reactions have been limited to hives and intense itching. Crazy thing though, I had been to three doctors before the allergist, and each of them were stumped. I ended up on Google, as I knew I had a tick bite and thought there had to be a correlation. I just had no idea that it would be related to food, only that the tick may have left an allergen in my body that still had to work its way through. Anyway, I looked up a connection to tick bites and extreme itching and came across all of this research. I am glad that I haven’t had to go for months wondering, but that all I had to do was find an allergist to perform the tests. My only dilemma now is watching when I eat out. Is there any way to convince eateries to list this as an allergy? It certainly would make it a lot easier.
Couldn’t agree more… Good post Matt!
Thanks. I just got the results from the blood test; 2.56. I didn’t think it would be that high given I only have hives and itching.
I started having severe hives on my face, neck and arms, and facial swelling a few hours after eating beef (or gelatin — even very small amounts), about three years ago. It took over a year for me to find out what was causing it. My primary care doc and dermatologist were just giving me oral steroids and strong prescription creams to deal with these “episodes”. I was finally able to figure it out by tracking my diet and symptoms. BEEF or Gelatin. I can still apparently eat pork. But my alpha-gal blood test came back “negative”. So, my question is, is there some other allergen that can be causing my symptoms, other than alpha-gal? I still have mild hives occasionally, and I’ve chalked it up to trace gelatin or beef cross-contamination. But maybe there’s something else I need to avoid. I do have an epi-pen now, since last spring when I had a severe reaction after eating a “turkey” burger that had apparently been cooked on the same grill or pan as beef burgers.
Jennifer- I have the SAME symptoms, and I tested negative for Alpha-Gal. Have you found answers? I break out in hives from the smallest amount of beef and dairy (plus severe GI distress with the dairy) but pork is ok for me for whatever reason. My allergist has no clue, but thinks I still fall somewhere in the alpha gal allergy spectrum. I carry an epi pen too. If I can avoid accidental cross contamination I do ok!
Red dye, food coloring gives me the same exact reaction as beef. It’s possibly worse. My worst reactions have been with ground beef and I think it’s because the groceries have put red dye in the beef or possibly that stuff they call pink slime. Strangely I’ve never had the reaction to fillet mignon or beef tenderloin. Now, because I’ve become aware of the Alpha-gal, I won’t eat beef or red velvet cake. Red dye 40 seems to be okay.
I have been at the allergist for the last three days and the girl doing my testing didn’t know anything about the beef and she wasn’t going to go ask anybody either. Luckily on my last day I got a different nurse and as I kept asking her why I wasn’t being tested for beef or red dye she finally gave up on me and went and got her supervisor. The supervisor was very well aware of the alpha-gal and the red dye and cave me the proper scripts for me to get tested properly, thank God. if I hadn’t been so determined to get answers if I had not kept asking the questions I still would be doing my own research (trips to the emergency room etc. etc.) and wondering just how far the extent of my health issues could be attributed to this. for me every episode goes faster and more aggressively and closer and closer to not making it. Having the death squad being over me and hearing one guy with the blood pressure asking the guy with the pulse if he’s getting anything and neither one of them are getting a reading,is terrifying. This is life-threatening in case no one has told you yet.
I’ve actually had one doctor who suggested I try to eat beef again because I might not be allergic to the beef but to what the beef ate. The medical community is unbelievably stupid about this.
I’m so sorry to have gone into this Rant. Check for the red dye as well. And thanks for giving me the opportunity to talk about this.
Before knowledge of the Alpha Gal allergy, I mainly reacted to ground beef and not steak or other cuts, I too thought it was red dye or processed something. Especially since I could eat other cuts… but now that I have read more about it, alpha gal is found in the fat of the meat and when I eat steak I usually eat leaner cuts and trim the fat, whereas in hamburger meat it is ground in… I also found I had the worst reactions to the cheaper ground beef, and I then thought there were more dyes or fillers and that was why, but now I believe it is the fattier meat. That is one of the unique things about this allergy is that it acts more like a food intolerance, the more alpha gal we get, normally the worse reaction we have. Just some “food for thought” =) since I too have had the same struggle.
Hey All! I have recently been diagnosed with alpha-gal allergy. I also have a gluten allergy. Anyone heard of a connection between the two? Try to figure out what is still safe to eat as well.
The answer to your question is yes, alot of people who have alpha gal also seem to be gluten intolerant. Best to check with your doctor to be sure.
No overwhelming evidence for that, Heaven’s sakes! Sure, but both allergies deal similar with factors. High level stuff like meal decisions, internal food processing capabilities, outside factors (like restaurants, hidden ingredients, etc.) and measurable physiological responses. So with either, those afflicted go to a favorite restaurant, get an (unexpected) ingredient and end up either miserable or needing immediate medical attention.
However, these are hugely different food allergies with distinct triggers and varied physical responses. With Alpha-Gal you get a tick bite and your body can’t process the proteins found in mammals (beef, pork, bison, etc.). You can become sensitive to the secret ingredients of many chefs (bacon drippings, butter and beef broth, etc.). Within a few hours of ingestion, you can experience swelling of the tongue that prevents breathing (anaphylactic shock). With gluten intolerance, seems that the jury is still out whether it’s purely genetic or driven by autoimmune factors. Regardless, once exposed to gluten containing foods (breads, flour, and almost anything else) your body reacts violently. Within twenty minutes your body is horribly upset. It’s been compared to the dry heaves in your lower gastro-internal tract! These are both nasty allergies with complex inputs and reactions. Both are complicated by restaurateur’s decision and you making extra trips to the emergency room.
The steak and bread food groups are simplifications that grossly understate the complexities of our available diet choices. Careful reading of menus, researching food labels and limiting exposure to anything unexpected should become your normal, expected behaviors. Lucky we can still control what we eat. Either allergy will test your mettle, my special condolences for anyone suffering with both! I completely agree that checking with your doctor is sage advise for anyone that suspects a food allergy.
I had problems with breads and torrtillas at first then realized most of those are made with mono and diglycerides ,they are usually made from animal bi products . Started making my own or buying vegan options and no problems, Something to think about .
I was diagnosed with this wonderful allergy last September. My first attack was in the middle of the night in July. Woke up sick to my stomach and then all of a sudden hives everywhere!! Swelled up like a balloon. Two Benadryls and it went down. Everytime I ate meat hives would appear in my throat. After I finally found out the cause…no more hives…except for an occasional miss hap. But the last one…which was my own fault ( it really is hard to cook for a family of 4 when you cant eat it!!) I noticed that along with the hives I was throwing up and diarrha. So I am wondering…can it be getting worse?
The team at Alpha-gal Allergy Awareness sends our most sincere condolences. Alpha-gal is like many other food allergies, it can get worse before ever improving. These sensitivities often become worse as you eliminate the foods that your body can no longer safely process. The best advice we can offer is to work with your health care provider to understand your own triggers and reactions before they lead to another emergency situation. I’ve included a link to National Institute of Allergy and Infectious Diseases’ “Food Allergy an Overview” that deals with food allergy fundamentals. You really need the find support while you learn more about your condition and work to keep yourself out of harm’s way. This is no easy task! It requires the help of your family and sometimes what seems like an overwhelming awareness of what you place into your body. We are here to help you along the way!
I was diagnosed with Alpha-gal 8 months ago. Like most I had several reactions,each worse than the one before. Until on a September evening, after eating steaks at a friends birthday party, I had a complete anaphylactic shock. My doctor and allergenist were excellent! They wasted no time in getting me a diagnoses.This has been a very difficult transition for me. I was raised on a Kansas cattle ranch. Later, I graduated from KSU with a meat science degree.My entire world and everything I was passionate about was turned up side down. I find comfort in knowing I’m not the only one with Alpha-gal. Having come to terms with this new lifestyle, I have taken the approach to educated everyone around me. I have scheduled several events with youth and outdoor groups in my area.
I developed an allergy to red meat more than 30 years ago. I was living in the of Australia at the time and it seemed to follow a severe case of food poisoning. I was also lactose intolerant for a while but am able to tolerant most dairy foods now. Is it possible that I developed this from the food poisoning? Doctors look very strangely at me when I tell them I am allergic to red meat and have seen IBS put in notes instead those symptoms caused by red meat.
I have had this for over fifteen years. Several times I have been rushed to the ER “Leaving this world” before my sister suggested I read about “THE TICK.” I lived in a rural part of the state of Tennessee where the ticks are no uncommon. Getting tick was commonplace. Finally I have the answers I have been looking for. Now all we need is a cure or a way to control the reactions and enjoy a “Good Ol’ Ribeye” again.
My husband has been allergy tested for almost everything and still has no real diagnosis, even with blood sent to an outside lab. His allergist gave us only a small cryptic comment about maybe reducing pork intake after blood tests & skin tests were inconclusive for such severe reactions. From the descriptions of alpha gal allergies, it seems possible that this is the culprit. What do you think?
In the past 2-3 years he has had, on average, 2-3 reactions a year. The first 3-4 reactions had similar symptoms (hives, chest tightness, and throat constriction), but the time interval shortened with each reaction until the fourth reaction happened within minutes of eating. Does this sound like alpha gal allergy?
Then it was quite a while between reactions. In between he kept to the same basic diet that he’d had preceeding the reactions (because we had no clue what caused his reactions). He would eliminate whatever restaurant that produced the reaction, but would eat similar meals at other restaurants and home. Only 1-2 of his bad reactions have been caused by food cooked at home. In between reactions he eats hamburgers, ham, bologna, sausage, etc with no problem, but then all the sudden he has a completely unforeseen reaction. Does that sound like an alpha gal allergy?
Also the timing of the reactions is odd for it to be tick/chigger bourne since at least 2-3 of his reactions have been in the dead of winter (New Year’s Eve one time). To our knowledge he was not bitten by a tick in the winter-time, although we do have indoor/outdoor dogs and live in Western KY. Does this fact eliminate alpha-gal as the source of his allergy?
We just returned from an ER visit due to this allergy. Thankfully this reaction was primarily hives with only some chest tightening, but no throat constriction. I’m going to schedule a visit with his allergist next week. I will probably ask her about this alpha-gal allergy to see if she can test for it. However, I’d like to hear back from you to see if it sounds like alpha-gal is even a possibility.
Thank you, Erika
Wow! I can’t believe I finally have an answer! I suffered with this allergy for several months (each time getting progressively worse) before my aunt, who also has it, suggested I should take note of what I was eating. She’s had it for years and never got a name for it. I was lucky I found out quickly about the meat causing it, but not until now did I have any idea a tick bite had anything to do with it. I had Rocky Mountain Spotted Fever when I was 10. My symptoms started out as hives but quickly progressed to nausea, vomiting, diarrhea, difficulty breathing, etc. Then 4 years ago I ate on small chicken quesadilla roll that, unbeknownst to me, had bacon in it. That was my first, and hopefully last, experience with anaphylactic shock. I am vigilant now, as I never want to have another episode like that. That said, it’s very exciting to find out that maybe it will go away over time. I moved to Florida (from Virginia) 2 years ago and haven’t been bitten by a tick since. I think I’d have to have a blood test with a reading of 0 before I’d be brave enough to ever try meat again though!
Sorry for the long post, but I am desperate for more info. I live in western Ky and have dealt with this for 6 years now. I hope no one has my “double problem” of having alpha-gal mammalian meat allergy and also having Mast Cell Activation Disorder. None of my doctors, including my allergist at Vanderbilt in Nashville, or Dr. Platts-Mills, or Dr. Scott Commins at UVA, whom I visited last July, are sure about the connections, but strongly suspect more will arise as the data bank grows. Here is the deal. My anaphylaxis episodes are sometimes severe and often. It started with only beef and progressed to pork, lamb and now dairy. Now I can’t even eat marshmallows or take my fish oil pill. After multiple tests, I have been found to keep high levels of histamine and tryptase in my blood all the time, so I am “at the edge” of anaphylaxing at any moment. It only takes a trace of allergens to “push me over the edge”. After my non-episodic serum tryptase levels (blood test) and urine methylhistamine tests continued to be very high, a bone marrow test confirmed that my mast cell walls are “leaky” and releasing too much tryptase, hystamine, etc. constantly into my bloodstream. This is also referred to as Asp 816 Val KIT Mutation. (I am grateful I do not at this time have the more serious form called mastocytosis, when the bone marrow makes too many mast cells, often leading to blood cancers.)
My doctors at Vandy and UVA believe the Alpha-Gal reactions over time have a correlation to the development of the mast cell disorder. I hope no one else has both going on, but if you anaphylaxis easily and have been diagnosed with alpha-gal, I would suggest you get a tryptase blood draw when not having an episode and research the topic. Thanks for any comments.
My heart goes out to you.
We live in Australia and my daughter had her first anaphylacxis reaction to a tick 3 years ago, then last year she had what they are calling an exercise induced anaphylacxis reaction to dairy and mammallian meat after playing a game of soccer within hours of eating. She is allergic too beef, pork, lamb, venison and kangaroo I know of 1 other little girl from the same school that now also have the same anaphylacxis allergy to bothe meat and dairy. We have been advised at this point not to allow any meat from the night before she is going to exercise as it seems to be the amplifier at this point has anyone else experienced this?
My daughter who is only 3 has been diagnosed with alpha-gal. Before the diagnosis, she constantly had hives and rashes all of her face, neck, and chest. We would notice that is was always worse after she had played outside or gotten sweaty. If she didn’t have a rash or hives and was running around outside, she would have a rash almost immediately after coming in and would have coughing fits. Again, before the diagnosis, two different pediatricians and one allergy specialist told us the coughing fits during the day and night were due to asthma and prescribed multiple asthma medications. None of them worked. I always wondered if exercising had any effect, but I wonder if it is just from the body temperature going up that the reaction is worse? It’s been very hard to tell if there are any other symptoms since she is so little and doesn’t understand any of this! Side note- she hasn’t been on any of the asthma meds in over a month and has not had any coughing episodes since we got the diagnosis and removed all mammalian meat and then dairy as she reacted to dairy as well.
Jen, do you know for certain that your daughter was bitten by a tick? I have a 2 year old that has had chronic hives for the last year and allergy doctor cannot find any reason. Our most recent visit last week he mentioned the possibility of testing for Apha-gal but I don’t ever recall my daughter being bitten by a tick. My daughter rarely eats beef, but had an anaphylaxis reaction a few weeks ago when she had a bite of hot dog. She drinks whole milk regularly and always has hives, so I’m thinking if she does have this she is sensitive to dairy.
I just learned today that I have the alpha-gal syndrome. I got a tick off me about a month before all this started. It didn’t happen every singe time I ate meat, but the majority of the time. I finally cut meat out of my diet just to see if that was the cause since the last anaphylaxis reaction. The doc did the test and got the results back today. Very confusing and perplexing.
I just wanted to let you know that we have created a facebook page for Alpha-Gal Allergy Awareness. Please like us to receive updates and any new information. The url is http://www.facebook.com/alpha.gal
Keep checking for details about a project that’s in the works that you all can help with!
I have been suffering with this problem for about 40 years. I can recall having 7 ticks on me after a camping trip when I was 6. My sister had two and my same aged uncle had none. I recall the removal with match heads and tweezers and the jokes of me being a tick buffet. Shortly after I continued getting rashes and hives. I attributed it to food eventually and was at 5’2″ only weighed 87lbs by age 20. I am much healthier now. But my entire life it seems I have been treated like I was crazy. I found myself increasingly depressed and paranoid when going out to eat. I lost a good portion of my social life over this. When I did dare to go out to eat with friends I would have waitresses roll their eyes at me when I proceeded to demand that no mammal flesh touched my plate. The worst part of this is how many doctors over the years suggested psycho therapy over it. When I found out about Alpha-Gal this morning I kept reading and reading. My eyes pooled with tears and I broke down. Having a name to this is a huge thing for me.
I’m so sorry that you’ve dealt with that kind of attitude for so long, Stacy!
I am officially waiting for results, but every one of the symptoms for alpha-gal fits. I read a scientific paper on it, and it was like, “Yup, that’s me! Yup, that’s me! Yup, that’s me!” I was so excited that I phoned my Mom in a frenzy!
I too have suffered some consequences from ignorance or disbelief from friends and family members. My boyfriend in particular did not believe that I had anything wrong with me, and told me that it was “all in [my] head.” The first time he saw one of my reactions (which happened to be a very severe, and painful, one), he immediately panicked, and chastised me for not going to a doctor. What people don’t understand is that doctor’s didn’t know about this condition then! So all I could do was avoid beef and pork. He tried to chastise me for that as well, saying it was something else. I hate feeling judged by my decisions in not to partake in something, because it might make me ill. At least now, people won’t get offended when I refuse beef, pork, or any other type of mammalian meat.
My 14-year old son just had a severe reaction after eating a ham & pineapple pizza 2 days in a row. Fine on day one, and bad reaction on day 2, before he even left the table.
Since he has peanut anaphylaxis, we assumed the pizza was contaminated. My astute Family Practice Physician wife called our exceptional allergist, and she had him immediately blood tested for alpha-gal. Positive result.
Fortunately, the docs were wise enough to postpone his flight to Greece. I went with our 2 other kids, while my wife managed his reaction over several days.
Thank God for a quick diagnosis. This isn’t the kind of thing you want to discover at 30,000 feet! Even though we travel with an extensive emergency kit, we could have been giving him allergens for our entire vacation, unknowingly.
His last known tick bite was last year. With redness and swelling. My wife treated it with doxycycline. We were both surprised at the lenght of time between tick bite and reaction.
My biggest question: how many sufferers can still consume dairy? He normally drinks almond milk, but I don’t know if we can find soy or almond milk while we are in Greece and traveling.
At 3am on June 20 I woke up with extreme chest pain and welts on my arms and legs. I drove myself to the hospital a.d by the time I got their I couldn’t breath
I had steak for dinner. My blood work came back off the chart so no more meats. I will miss a good ribeye
.. I have a dog and guess I missed the Lone Star tick
My 3 yo daughter was bitten by a lone star tick and three weeks later developed a huge swollen gland on her neck and started running a fever. She also started acting a little “out of it”. The pediatrician gave her 10days of doxy. I had read about the alpha gal allergy and requested he test her right away. It came back negative. My question is– did we test too soon? Could she still develop an allergy over the next couple of months?
Wow! I’m glad the WSJ published the article on this recently, as I haven’t searched on this issue in years.
I have dealt with this condition since 1994. Just realized that’s almost 20 years, wow.
I, like many others, could not figure out what in the heck was wrong with me. Many trips to the ER for severe hives over the years. I finally figured it out after eating Benadryls like candy. The problem with taking them like candy and in doses much higher than intended, is that they don’t mix with a beer or two. Needless to say, I ended up in an accident after falling asleep at the wheel and in the hospital with a broken femur and a few other fractures.
(My apologies for the long post, I’m thrilled to have found this website and need to vent my long needed therapy session).
While in the hospital, I consumed a meal of pot roast the day after my surgery, it was the only food I had eaten. Like clock work, hours later came the hives. Talk about uncomfortable. I explained to the staff I had been battling an unknown allergy and I had been to their ER many times. Luckily they gave me the “shots” quickly and the symptoms subsided.
After being discharged, I decided to give up beef until I could try to figure it out. In 1994, figuring it out wasn’t so easy. AOL and the internet weren’t exactly chocked full with as much information as we have today, especially on “freak” things like this.
Having an allergy to penicillin, I thought it was perhaps the antibiotics they gave cows, or possibly the growth hormones. After trying grass fed and no antibiotic/hormone beef with the same results, I gave it up and said I guess I’m screwed. Somewhere in there, I discoved pork had the same results.
I last tried a bite of a pork tenderloin in 2004. I had always noticed that the severity of the reaction was tied to the volume of meat I ate. I figured a bite wouldn’t hurt. Uh, wrong answer. In the middle of the night, 5 or so hours later, I became violently ill and broke out into hives. I haven’t touched meat since.
In 2006, I started having gastro issues for unknown reasons. These symptoms would hit before I could finish whatever it was I was eating. After a multitude of the gastro tests by doctors and not having an answer, I basically quit eating. I was consuming Ensure beverages for nutrition and nothing else. After 4-5 of those one day, I woke up in the middle of the night to the ever so friendly case of hives. I immediately cut out milk products the next day and resumed eating food free of beef, pork or milk. I haven’t had an issue since.
I went to an allergist about 4-5 years ago and he did the standard skin pricks on my back with negative results. He also sent me to have blood drawn for a beef allergy test, also negative. I’m assuming that the blood test given did not check for alpha-gal and looked for some other IgE as there is also a “beef” allergy, according to what I have read.
I lived in north Florida almost all of my life and have been bitten by ticks occasionally and chiggers repeatedly. I used to get chigger bites often when camping while I was a Boy Scout. The problem was, my chigger bites would always take 6-12 months to resolve. Many trips to the doctor for this as a young boy.
In the last several years, I have been bitten by ticks at least a few times per summer. After developing some sort of tick borne illness last year, my primary doc just told me to come in and get on antibiotics just in case. In regards to the actual site of the tick bite, these also take almost a year to resolve and one site left a small crater (maybe a not a crater, but an indention) in my leg. These sites itch like crazy and my primary ended up giving me a steroid paste to apply. This did speed up healing somewhat.
I’m sure I’ve missed many a detail, but this is certainly long enough.
Again, my appoliges for the long winded post, it’s just not that often that you come accross a website (or people) that can actually relate to this issue. It does provide challenges trying to explain my “allergies” and you certainly get a lot of weird looks. Restaurant servers always look dumbfounded when you say I’m vegan but eat poultry and seafood.
If you made it to this point, I appreciate you taking the time to read this. And again, sorry for the length, but dang, I feel better saying it. Especially to people that get it.
Have a great day all!
I was diagnosed with Alpha Gal yesterday. But I am having reactions that no one can seem to explain.
We were on vacation last Thursday – had a dinner of steak and Caesar salad – awoke in the middle of the night to extreme itching – then my hands were on fire and the next thing I knew my tongue and lips were huge. We had no phone service as we were in the middle of the country and had to drive to even call 911. Very scary and very thankful for a great emergency response team.
Went to an allergist Monday and had blood work done. He immediately suspected Alpha Gal when I mentioned the tick bite I received about a month ago. Wednesday had another attack (in the hospital for 2 days) – even though I had no meat – all I had was a smoothie with almond milk, blueberries, banana and kale (made at home). After receiving my test results – I also tested high bananas.
On a strict diet of chicken and rice and have been told to add one new thing back in a day.
Last night I had chicken and rice and had symptoms and this morning added oatmeal and had symptoms – I had no sensitivity to gluten in the tests.
Here are my symptoms – has anyone experienced any of this – it is so weird to me. I am very healthy athlete, always in tune to my body – so this is all new to me. Help!
After I eat I experience:
1. Extreme sinus pain
2. My throat tightens up on each side (doesn’t close it’s just like the muscles are constricting)
4. Lower leg tingling
5. Ears ringing very loud
6. Lip and tongue swelling
7. Ears itching and other random itching
Sometimes chicken is cooked in lard, and it may have been cooked in beef lard specifically. I’ve also heard that small amounts of alpha-gal are in dairy products, which would explain the reaction to your oatmeal. Sounds like your body is in “overdrive” and hypersensitive. You may need to avoid those foods for a long while before even trying small doses.
I had a rx to a filet mignon about 5 hours after eating it in mid June. I remembered reading a little about alpha-gal & ticks in a scientific article, so I looked it up & sure enough my symptoms were the same. I had been bitten by several ticks in April while hunting morels. The nurse at my docs office didn’t think I knew what I was talking about but the allergist I went to did. Has anyone lost a lot of weight with this?
September N, I feel your pain. I also have similar reactions to foods that no one could explain.
I have had Alpha-gal for a year (from chiggers).
This may help. “The Histamine and Tryamine Restricted diet by Dr. Janice Joeja.” You mentioned Blueberries and Bananas. Those two are on the restricted list. I have found this list to be very helpful. Over the past year I have had all types of reactions to foods that I loved. Healthy foods (tomatos, spinach, cabbage, citrus fruits).
It goes without saying….stay away from red meat/pork.
I never eat leftovers. I always have a reaction to foods that have set for a period of time.
Good Luck and don’t give up. You are not crazy. (I keep telling myself that, LOL). The only person that understands is my hubby, he has seen me go through enough reactions.
Hope the Histamine/tyramine Restricted Diet helps.
I have just been diagnosed with alpha-gal. I came back with a strong positive. I have been suffering for 3 years with this and I have gone to many doctors with no answers in the past. I was almost put on psych medication BC my doc didn’t believe me. It took my father and my own research to figure this out. I do not get hives. I have severe violent vomiting and severe diarrhea that lasts for hours. I also feel dizzy, and have chills with a migraine. Almost flu like symptoms. I am so grateful to finally know what is happening to me.
After becoming allergic to beef and lamb in 2006, and learning right away about the tick association, I suddenly had a reaction to pork in June. I may well have had new tick bites this spring that I thought were chiggers. Since then I have been tested positive for Alph Gal. If I stay away from ticks and avoid red meat, is it possible for the allergy to progress even so to where I cannot eat dairy products like cream and cheese? These are staples in my diet now. So far I have had no reaction to any dairy or the whey protein in my smoothies.
I was diagnosed about 7 months ago with a blood level of 5.17. I had some arthritis prior to the diagnosis, but it seems worse over the past few months. Has anyone experienced this or knows additional information about a connection? I know that people with Lyme disease can get arthritis symptoms, which is what has me questioning this.
I was diagnosed with alpha gal. Not only get the hives but swelling in my joints and knots red hard and painful in my feet hands an scalp. I can not eat no dairy no mammal meat and no sugar. This allergy is very depressing. Especially at the holidays. It would be nice if these doctors that discovered this allergy to acknowledge you when you write them. No doctors know about this and it is very frustrating. By know you would think the allergists would do some research and try to help their patients cope with this horrible allergy.
I just got my results. 5.14. I also have lyme and bartonella. The test for lyme costs about 300 without insurance but I recommend it. The longer you have it the worse it gets and the longer treatment takes. got to ILADS.org and email them to get the names of lyme literate doctors in your area. If you don’t go to a lyme specialist they won’t take you seriously, won’t give you the right tests, and won’t treat you properly. good luck.
Also, can anyone relate their test numbers and whether they tried eating meat again.
I think I got this. Started having symptoms last Friday. I have been to the Dr for hives 3 times this past week. After a segment aired on this condition on the news I realized it was happening after eating beef.
Hi all I have read all post as I was told Tuesday that I tested positive for Alpha-gal. I have been sick since the end of January. Hives and itching so bad. always happens in the middle of the night. ER visit in February and was told it was an allergic reaction to an antibotic that the Dr gave me for the hives. Go figure. Any way I have cut the meat out of my diet and noticed that milk still is causing me trouble. Last night I ate a little debbies peanut butter cookie and woke with hives this morning. My question is am I going to have to avoid all dairy products in foods also. The cookie had Whey in it. Glad to have finally found out what is going on cause it was beginning to make me think I was crazy. Any answers are most welcomed.
Anyone know anything about a link between Alpha Gal and blood type?
At one time they thought there might be a link with blood type but that was disproven.
If you have A or O blood type you are more susceptible. Check out this article http://fairfieldcountyallergy.com/allergy-to-red-meat-linked-to-tick-bites/
Hi, I have started breaking out and having terrible reactions to beef which landed me in the local ER several times within the last 6 months. It took a while to pinpoint what was causing the reaction since it was always a delayed reaction. At first i had no reaction to pork and still ate it but now I can no longer eat any beef or pork. I had the alpha-gal blood test done twice once in march or april and then again in aug, both came back negative. I also have a reaction if my food is cooked close to beef or pork. My question is… If the alpha gal results were negative WHAT IS WRONG WITH ME????
I had an alpha gal test done in January of this year which showed negative. I KNEW I had mammal meat allergy so I ignored the negative result and kept avoiding mammal meet. This month I went back to allergy doc and learned the nurse had ordered the wrong test in January. He ordered the correct test and it came back positive for alpha gal allergy. If I had relied on the results of the first test, I am sure I would have had more trips to ER or might have died. The doctor’s office may have ordered the wrong test for you. Go back and insist they make sure they order the correct test. Apparently my doc’s office orders tests online at their main clinic lab and the nurse had checked the wrong test from the drop-down list. I can’t believe he admitted it, but he said every test she ordered for possible alpha gal allergy was the wrong one. However, they never called to let me know – I learned this when I went back to his office 9 months later.
I started suffering from this 35 years ago. Two or three middle-of-the-night trips to the ER weekly for the benedryl/adrenaline shots. I was instructed to eat benedryl like candy which kept me zombie-fied most of the time. Eventually, a trip to an allergy clinic (1980) revealed that I was “allergic to something I ate,” and did I have any insurance because it could cost thousands of dollars to determine the cause.
I went home and my wonderful wife started keeping track of everything I ate, and after many more ER visits finally determined it was the red meat. What made it difficult was, like for others on this forum, the allergy started gradually, a burger from one place was ok, but a Wendy’s burger sent me to the ER. Eventually, it became obvious and I stopped eating red meat altogether. This was in 1981.
I had bad allergic reactions (hives etc.) to dairy as a child, but outgrew it… mostly. And, I live in Oklahoma, where ticks are the state insect. Of course I’ve been bitten. So my question is what causes some of us to react to the tick bite and not others. What is it in our systems (or the lack of) that pre-disposes us to the illness and not others?
And how nice it is to be able to put a name on something that has affected our lives, (and the lives of our families) for a long, long time. Thank you forum.
I’d just like to add, that in my opinion, as long as our U.S. health-care system is a for-profit system, we’re pretty much screwed. The money is in drugs and ‘maintenance’ and not finding a cure. But that’s a different forum.
Am still dealing with denial!!! About a month ago, maybe 6-weeks I found a tick in my groin area. No big deal I thought, just “another” tick bite. Over the years, I have had more than a few.
I didn’t look too closely at the specimen when I removed it, but did notice it had a slightly different body shape than previous ticks I had removed. But the bite sight was more “itchy” than I remembered from my previous bites.
Then several days later my fun began. I normally eat a cheeseburger several times per week for lunch and grill a steak on Sunday evenings. I had my normal lunch for a couple of days after the bite with no problems…
On Thursday three weeks ago I had a cheeseburger for lunch. Then about three hours later I broke out into a cold sweat and had severe abdominal pain. I told my secretary I was leaving for the day and I went home to lie down. About 4-6 hours after symptoms began… they stopped.
Sunday evening I had my usual steak dinner. Nice rib-eye. Cooked medium. Woke up 4-hours later… same pain as before, but with the added treat of severely itchy hives. Finally managed to get to sleep and when I woke up Monday morning… all hives were gone and I felt fine!
Ate chicken all week last week… no problems, no symptoms. Had not discovered all the info on alpha-gal yet, but based on my observations and superior powers of deduction I suspected some problem with red meat.
Decided to eat a burger to “test” my theory. I’m an idiot. But my suspicions were accurate. At first thought I may be having a gall bladder issue, but my search brought me to this allergy instead.
I have requested the blood test, but have not had it done yet. However, nothing else makes sense. I’m still trying to come to terms that I may never be able to eat beef or pork again… and trust me on this… it depresses me!
I suddenly became allergic to beef about 8 years ago and I am in the outdoors all the time. Having tick bites is a regular issue. I have had varying degrees of reaction from tightness in my chest to full blown anapalactic shock. It started with only beef and now it seems to be beef and pork The allergy to pork is becoming worse as time goes by. at this time I can still eat deer without a reaction, but who knows how long that will last. Somebody find a way to stop this junk, I really want a steak!!
I am so amazed that I am not alone. I am sorry that so many are affected. I became allergic to beef about 14 years ago and to pork about 5 years ago. Never heard of this. It started out with stomach issues and quickly progressed to ER trips before pinpointing beef. I tested positive for a beef. I recognized the symptoms with the pork when it started right away but never got tested. I was pregnant with my son when I started having problems eating beef, he was born with food allergies and still has anaphylaxis to peanuts. I know I have had tick bites. Thanks for a safe and knowledgeable place.
You are not alone. 2 years or so ago I had a couple tick bites. Did not think anything about it. I started to get sick to my stomach progressively. No one in my family could figure out what it could be. Went to a doctor several times and kept getting no answers. Which I would develop hives and got really warm, So finally went to an allergist and they tested beef and pork and sure enough they came back positive. Earlier this week I got more tests done and they came back with almost nothing there. So there is hope, I stayed away from pork and beef for a little over two years.
Does freezing meat give a different reaction? Before this allergy was diagnosed, I did not always have a reaction after eating meat and wonder if perhaps those meats that didn’t react had been frozen.
For many years my husband has suffered from this allergy (though we just recently discovered what it was). He has not had the antibody lab test, but after researching how many people have progressively worse reactions I think I’ve in ally convince him to see an allergist.
We live in Paducah kentucky and love to go hiking and camping . Tick bites are unavoidable here. Even with big spray these ticks are still extremely aggressive. Several years ago we were hiking at mantle rock and got into a patch of baby ticks. There were literally hundreds of them on us and more bites than you can count. That’s when this all began.
After a lot of diet observation we discovered the link to beef.
Here is his classic reaction (which occurs 4-6 hrs after eating beef): starts with severe itching of the scalp and groin… Then diarrhea and vomiting , hives all over the body, swelling of old tick bite sites, sweating. Benadryl seems to help, and if we catch it soon enough can prevent a severe reaction. We’ve noticed that there is definitely a threshold, and fat content I the meat may play a role. (Mcd hamburgers especially) As I’ve researched more about other accounts of the allergy I found that many people get heartburn. Im thinking now that my husbands “acid reflux” related dry heaving and heartburn episodes may actually have been just mild alpha gal reactions all along. So far he’s only had issues with beef, but early this morning he had another reaction. The culprit? Pork. Now it seems that he has allergic response to both meats.
I’m now concerned that my husband is at risk for having an anaphylactic reaction.
Hopefully soon there will be more awareness of this condition!
Don’t forget–if any of you would like to print an informational brochure to distribute to local restaurants and/or school cafeterias in your area,send me an e-mail, and I’ll send it to you. We can get the word out about this very bizarre allergy one brochure at a time. Just take one when you go out to eat and ask them to show it to the cooks and managers. A little knowledge goes a long way sometimes! Thank you for your help!
please send information. I have had symptoms of allergies all my life but my first swollen lip was 36 years ago after my son was born. I had Pitocin which is made from the pituitary gland of mammals. My symptoms have increased and two years ago I was diagnosed with lymes disease. I ran 103 temp off and on for a month. Since then swollen lips, tongue and throat were almost a weekly incident where I used my epi-pen. No allergist could find out what my problems were but a new very astute Internal medicine Dr ran the alpha-gal test and it was positive. I am now off all dairy and meats. Glad I love chicken and fish, but eating out is a nightmare. I had a reaction after salmon at longhorn. Figured it must have been on the grill with steaks. Just want to get the word out so people don’t look at us like we are crazy!!!
I would like some information please. I live in Oklahoma and I have been diagnosed since September.
could you please send me a brochure. I even have family that just can’t believe that a tick bite has done this to me. And I have had restaurants even ask me if this is because of religion. I get so mad and hurt that people just don’t even care enough to help me do what I have to do. I can’t even go to events for work. You never know what people add for flavor. Thank you so much in advance. Kellie Holben
I have sent the brochure to your e-mail. Please let me know if you didn’t get it.
If the brochures are still available, I would like to have one, please. My brother has recently developed this allergy . He has been to 5 doctors so far and none of them are familiar with this problem. Thank you.
I would like a brochure if they’re still available. Thank you.
Okay, I’ll send it right away!
Two years ago, about the start of deer season, my younger brother, then 15 years old, started violently vomiting, which fallowed with him breaking out in hives. The third time this happened his throat started to swell shut. Every time he had this reaction it happened faster and was worst than the last time. Finally after a year of us not knowing, thousands dollars of hospitals bills, and fearing what would happen next, the doctors finally said he was allergic to mammal meat.
My brother and I are the fifth generation to raise beef cattle, my brother raise pigs in the summer and I raised sheep. Our diets recovered around what wee raised. Our family also has a very high metabolism rate. Cut mammal meat out of my brothers diet has hurt him severely, him being six foot five inches at the age of 16, and only weighting 130 pounds. In the first week without meat, he lost almost 10 pounds.
Now the doctor is saying since his allergy is high then most, he may have to cut milk out of his diet as well. My brother has lived off milk his whole life and this was his only sore of protein he had. He complains about being hungry all the time, more so then a typically teenage boy.
My husband alpha-gal results were 10.10. He has a hard time believing this but he is sticking to his new diet. He is still eating ice cream and milk products with no problems. Hope he doesn’t develop a problem with this.
Hello everyone! I’ve got a question for you. Last summer I went camping in Virginia and Tennessee and was eaten up by a variety of bugs. I developed a reaction to dairy, which at first I thought was lactose intolerance. I kept getting sicker and sicker. The slightest amount of dairy would cause significant GI distress, and itchiness starting on the insides of my elbows, the backs of my knees, and my neck. Once I cut dairy out completely, I noticed an itchy rash about 3-4 hours after I ate beef, and have felt my throat closing. The good thing is I can usually take a benadryl before the reaction gets too scary. I have an epipen now, and eating out is difficult. I saw an allergist and my skin and blood tests for beef and dairy came back negative. I then had the Alpha-Gal IgE blood test, which also came back negative. Has anyone had that happen? I have the symptoms of Alpha Gal allergy. I can eat pork with no problems, but definitely no dairy or beef. I’m trying to figure out what’s going on, and it’s frustrating that I don’t have answers. Any insight would be appreciated! Thanks!
I was diagnosed a year and half ago, this site is a great idea! I was wondering if there has been any push to better inform emergency room doctors and staff about the allergy. After two trips to the ER with anaphylactic shock and severe hives I deducted that I was allergic to pot roast. Twice I was basically ridiculed by ER doctors and staff, treated and sent home without referrals to an allergist or even an epi pen! On my own I did research and contacted Dr. Platt-Mills and went to an excellent allergist who ordered the proper tests and gave me a life saving epi-pen.
I actually think it is more important to better educate the emergency rooms than to pass out brochures at restaurants. How can I help?
Even though brochures for restaurants and school cafeterias are very important and even life-saving, we want to inform and educate all of the public about this dangerous allergy. Handouts for hospitals, particularly emergency room staff is a project that we will be working on in the new year. You can definitely help us get the word out as soon as it’s finished! Thanks!
Is the brochure available?
Yes, I’ll send it to you.
Get used to being ridiculed, insulted, and marginialized as a crazy conspirasict as this will be the same reaction you will get from any ER Doctor as well as your primary doctor.
Have even had an “allergy specialist” doctor laugh at my even mention of Alpha-Gal. Despite their being an Articel in a medical news magazine about the topic in her office waiting room.
….yeah…. Never been back to her either.
Have the doubtfull honour of being the first reckognized member of this order in Denmark.
Do not eat mamal meat,eggs,dairy products or products with wheat.
Go into a supermarket and see how much is left.
The worst thing is that I have not found a beer that does not hurt my skin.
Californian red wine is OK.
We live in a wood and have been bitten many times but the case started very suddenly a year ago.I wonder if it is a threshold thing;first ten bites are free but then You are doomed.
I have recently been diagnosed with alph-gal. I was bitten by a tick in june of this year. It took six reactions over four months to finally figure it out. What is the best way to keep up tp date on this? Do further tick bites make any difference from here on (other than the possibilities of Lime Disease) as far as alpha-gal is concerned? Does your organization accept donations for educating people on this? I am in eastern Nebraska and I had never heard of this. Would it make sense to put an article in our local newspaper about what happened to me?
We post articles on our facebook page at: http://www.facebook.com/alpha.gal
Like us to get the latest news and updates and to connect with others who are interested in this very dangerous allergy.
Research indicates that further tick bites do make a difference concerning alpha-gal allergy. You should always wear repellent when going outdoors in the summer, especially when going into the woods. We don’t accept donations, as we are an awareness site and not a foundation, but Dr. Scott Commins at the University of Virginia is always needing funding to further his research. As far as the article goes, anything you can do to increase awareness about this allergy would be helpful. Thanks for being a team member!
Yes further tick bites do make it worse. Be very careful if you have the allergy and are only having problems with beef. I was bitten 10 years ago had an allergy to beef for 5 years. I slowly reintroduced beef and was fine for 5 years. I was recently bitten again and now have not only allergy to beef, but pork and all milk products, cheese, butter. Make sure to protect yourself. There is not much left I can eat and many processed foods are poison to me.
I experienced this several years ago and was placed in local hospital for two days while they ran tests. I thought I was going to die before I was able to make it to the emergency room. Nobody knew what was going on with me.
In May of this year I was bit by a lonestar tick while in the woods. In June I had two more episodes, both times requiring an emergency room visit. I was able to put it all together after visiting an allergy specialist and she floated the possiblity. Well after test results, I found out I had it in September of this year.
I havent had beef, pork, deer, or anything else other than fish & chicken for 6 months and it has been a difficult journey. I grew up on beef, like most americans. People tell me “Come on man, you’ve got your epi-pen and benadryl, just eat a steak.” But they havent felt what it is like when I do and I pray they never do.
Hello everyone, i was told over 10 years ago I was allergic all red meats including pork and lamb. They also told me I was allergic to milk products. They could not tell me though why I suddenly developed these allergies. I have never had hives only symptoms have been severe itching and swelling in my hands and feet,trouble breathing because of my throat swelling. I finally went to a allergy physician after last ER visit and he tested me for the Alpha Gal and it came back positive. I have an Epi-Pen and predisone on me at all times. Benadryl stopped being as effective for me.
Hello, I have had this allergy since 1991. Had to do a food diary to find what I was allergic to. I avoid beef and pork. I understand the difficulty to not eat red meat. It is good to know why I became allergic to these meats. As a nurse I know there are several medicines with a pork derivative, heparin, armor thyroid not to mention gelatin which is in so many things. Alerting the food industry is a challenge, most don’t get it, and look at you like you have 3 heads when you ask 20 questions before you order. :0) Good luck to everyone.
My husband was never tested for alpha gal and was a vegetarian for the last 30 years. He had a fatal allergic reaction after receiving his first dose of cetuximab (Erbitux), an immunotherapy agent used for colon cancer and head/neck cancer. He worked in the national parks at the northern end of Sydney, Australia and was bitten by ticks ALL THE TIME.
Dr. Platts-Mills initially was looking at why people in certain parts of the US had allergic reactions to cetuximab in the order of 22% vs 3% in other parts of the country. He made the link with ticks and cetuximab and alpha gal. Working with others, the red meat connection also came to light.
Take home message is if you allergic to mammalian meat you might also react to this drug should you ever be unfortunate enough to need it.
Ticks are nasty little creatures.
My daughter has been diagnosed with the alpha-gal allergy and dairy allergy (she is 5). We are unsure how she acquired the allergies, as she never got any tick bites that we could see. We speculate that she may have gotten the allergy through mosquito bites, as she was bitten by a bunch about a year ago. My question is, should we get rid of our family cat? He is a mammal, and there is a pork-cat allergy link (though my daughter did not test positive for a cat allergy). I just hate to think that we are exposing her daily to allergens just by having the cat spreading saliva, etc. all over the house. Should everyone with an alpha-gal allergy ideally be without mammal pets? Any comments on this subject? Thanks and good luck to you all!
Don’t get rid of your cat because of the alpha-gal allergy. Alpha-gal allergy is a food allergy to mammals, so your daughter would only be allergic to mammals that she eats. Having a mammal for a pet doesn’t affect an alpha-gal allergy sufferer.
With regards to Alpha-Gal and the keeping of pets, one has to be extra careful to not cross contaminate between the animals food and yourself.
Given that I do not trust the pet-food industries standards… I would recommend trying to keep the cat’s food to fish & chicken as well.
Dogs are easy to cook for, as a good meal of Cooked Rice or Oatmeal mixed with chicken, tuna, or even swanson’s chicken broth has kept them happy and lessons the ER Trips.
That being said the Vet Office is akin to going to a Meat Market and I have to dose up with Anti-Hestamines before hand.
I haven’t yet been diagnosed (waiting for my blood test results), but I’ve had reactions to an increasing number of mammal products and byproducts for about a year now. I’m finding that I can’t tolerate milk derivatives, especially whey, sodium caseinate, and calcium caseinate — Morningstar vegetarian burgers and non-dairy creamer make me react. It’s frustrating having to examine the labels on every single thing I eat, and I’m still adapting to my diet restrictions. And I’m pretty sure I’ll never get used to the incredulous tone people take when they ask, “What do you mean you’re allergic to mammal meat?” And I’m still amazed when I specify I can’t have beef and pork, only to be asked, “Wait, so you can’t eat eggs!?” Cause eggs come from cows, right? Sorry for the rant. I’m sure most if not all of you have felt similar frustrations.
Here’s hoping for a cure!!
I have been recently diagnosed with alpha-gal. I have an upcoming colonoscopy scheduled. Jello is my usual day before diet. Do I need to avoid gelatin?
Does anyone here believe they got this allergy from a different tick, such as the black legged or deer tick?
Anyone have their tick bites in the pacific northwest?
Am I the only one?
(tested +ve by viracor in 2012, symptoms since 2006)
Jen: I’m a rancher from Missouri and I’m certain mine came from the many deer tick bites I got in the Summer of 2012. My local allergist also reports deer ticks are often identified as the suspected culprits here.
I suspect I received this from a tickbite 18 – 24 months ago. In Sydney, Australia.
Seeing posts from sweden and the info on the Lone Star tick make it seem like this is a worldwide issue.
Like so many of the people posting here, it’s “great” to hear from so many people who seem to share problem. I can’t tell you how helpful this forum is as I have felt very alone with this for some years and it’s exhausting explaining why you are turning down meat at social events or have to quiz staff in restaurants if there might be eg bacon in the fish stew etc – I am not a vegetarian! I am in Scotland and my allergy seemed to build up over summer of 1998, resulting in one spectacular hospitalising reaction – to haggis! Through careful consideration of symptoms over previous months I was pretty sure this was a four-legged meat-induced reaction and have carefully avoided all mammalian meat since then. I have just become aware of the possible connection with tick bites – which might make perfect sense as this allergy appears to have built up over the time period in which I became more and more exposed to tick bites (I am a hillwalker/climber/orienteer and can be bitten by multiple ticks on a weekly basis!). Recent blood tests show specific allergies to mutton, pork, beef and milk. (I still eat dairy products but am considering a trial period without to see if there is any change in my general health – normally very good but might be worth the experiment). I have recently obtained details of a local clinical specialist and will write with relevant scientific paper links etc as it would be good to find out if there is any similar pattern emerging in the UK/Scotland and to ensure they are aware of this. Thanks for all the information and support gleaned here.
Just to add to your comments, that I also suffer the after effect of midge and or horse fly bites and cannot eat beef, pork, lamb or venison for several months afterwards. I have endured this for around 10 years now but have just had a really scary moment last Friday 28th March 2014 when 3 hours after eating a venison sausage I started to itch and straight away took a pireton tablet, the rash got worse all over back, arms and lower torso and eventually I fainted for a short period, my wife called the paramedic and after around 30 mins of tests including ECG I was feeling a lot better, the ECG and BP was all good and after speaking to my doctor the medic decided there was no need to go to hospital.
Just to close we were on the Isle of Mull last August and had a few midge bites but not that many and a month later we went to the Canadian Rockies for my 60th and I ate a portion of blueberry pie at one diner and 3 hours later started to have hives on my arms and wrists, I put this down to a possibilty of beef suet in the pastry !
I will discuss having a epipen on next visit to doctors.
Hi there Hill Girl,
I am currently working with a meat allergy specialist here in the UK and I would be really interested to talk to you and ask you a few questions about your allergy?
Please feel free to drop me an email at email@example.com
I hope to hear from you soon.
My husband has been diagnosed with this alpha gal allergy and we have been able to eat ostrich meat for the past several months, thinking that it is not a mammal, but is a red meat. However, he appears to be having a reaction to some ostrich meat. Does that make sense? Would ostrich have alpha gal?
I think it is likely that the ostrich meat was mixed with a little beef or pork; or was cooked with other meats. I don’t think ostrich has alpha-gal. I had a reaction to Ostrich once but I think the meat vendor had mixed it with beef stretch it out further….I have eaten emu and other dark bird meats without issue.
I was recently diagnosed with this allergy but while I eat this type meat literally everyday I only have a reaction every few months or so and only after I have gone to sleep at night. I often eat venison and pork sausage for breakfast and a burger for lunch and I have never had a reaction except after I have fallen asleep. why don’t I have a reaction each time I eat this type meat?
That seems to be the same problem with my son. He is 19 and refuses to quit eating the meat because he has grown up eating beef and pork. We have been to ER about 4 times in the last two years. He does have freqent GI upset and does sometimes have a rash and wheezing. He was diagnosed with Alpha-Gal allery about 1 year ago but says he is unwilling to live with such restrictions! He has been anaphylactically allergic to wasp and bee stings since he was 5. I guess it’s a good thing that chicken is his favorite meat. He does eat beef and pork though, only about once per week.
The meat has to digest..the fattier the meat, the worse the reaction.
My skin hives started to appear last quarter of 2013 and it took me awhile to figure out what’s causing it until i finally notice that every time I ate pork, beef and chicken meat but not to the point that I have to run to the ER. I’m wondering if any of you can share any information like how long it stays and what it looks like when it’s starting to appear- in this forum or support. Being a vegetarian after having this allergy have a good effect on me though like losing some weight. Is taking antihistamine helps?
You should be able to eat fowl and fish unlimited if it is alpha gal allergy only.
Another thing is that I have become sensitive to other things after the violent outbreak of our noble disease.
Wheat,sunflower oils and a lot of food chemicals.
I was not before and I am not green or something.
My little man is just 5 years old and has been diagnosed with this and it’s terrible because he’s a super picky eater and now it’s even worse! Can any one help me on why to feed him!
My father was diagnosed with Alpha-gal 6 months ago while having suffered from the allergy since 2010. It wasn’t until he had suffered from two anaphylactic chocks and hospitalized both times that the doctors were able to diagnose him..
This truly is a global allergy, cause we’re located in Denmark and from what we’ve been told by Danish doctors, it’s the Swedes that are progressing the most within finding a solution for Alpha-gal.
My father has completely stopped eating anything that derives from mammals, including cheese and other dairy. His general health condition has significantly improved, including a somehow reduced arthritis in his hands and fingers.
My symptoms express differently than most people’s. Before I was diagnosed, thus before I began avoiding the allergen, I had six episodes of anaphylaxis; though I did not know it was anaphylaxis. For me, it manifested as gastrointestinal anaphylaxis rather than the traditional respiratory type. It would always occur at night and would start with a subtle stomach ache and general discomfort. Within 15 minutes it would burgeon into an extremely painful (I mean moaning/writhing in pain) stomach cramp. I could literally feel my stomach lock into a fist-like ball of hell-pain. This would last for 6 to 12 hours and then just magically release. Sometimes I had hives, other times I did not. When I did have hives they were largely restricted to my forehead and neck.
Before I was properly diagnosed I was told I had gastritis and was given H2 blockers. When I was on them I did not have the cramps, but my stomach always hurt. If I would miss a dose, I would have a gastrointestinal anaphylactic event. Eventually, I tracked down the best team of gastroenterologists in St. Louis. They told me that I very likely had a stomach ulcer and that they needed to do an endoscopy. The endoscopy revealed that I had neither an ulcer nor gastritis. Baffled, the docs told me to take a different peptic medication (in the process I had become allergic to Pepcid AC, then later Prilosec).
At this point I stopped taking the medication because it was not doing anything. Like clockwork, along came an attack. On a whim, I drank some of my kid’s Benadryl; instantaneous relief. A quick trip to the immunologist; a blood test and a positive result for Alpha-Gal; not to mention thousands of dollars accrued in medical expenses due to misdiagnosis.
Any who, I thought my unusual expression of the illness might help someone that is not having the typical symptoms to further pursue this avenue as a potential cause for their troubles. Folks might also be interested to know that I came out the other end of this with allergies to legumes (peanut, soy, beans,….) that I did not have before (verified by skin prick tests). I did not feel like my stomach was fully normal until I eliminated them from my diet.
Thanks and good luck to us all.
Justin–your symptoms are nearly identical to mine. Self-diagnosed my allergy after months of reactions exactly as you described above… SEVERE stomach pain that last for several hours (this is coming from someone who had two kids without pain meds). Since having the allergy confirmed a year ago I have been able to avoid exposure to any meat until a couple of weekends ago when I must have accidentally eaten something cooked with meat. This time the reaction was far worse than before including respiratory anaphylaxis in addition to the gastro symptoms (I am never ill, just in an agonizing amount of pain). Despite vowing to be even more diligent than before, the very next weekend I realized mid-bite that I was eating something with bacon pieces. Desperate, I immediately took a standard dose of Benadryl hoping to at least lessen the severity of my reaction… to my surprise I had no reaction at all. Wondering if anyone else has had this happen or if maybe I stopped myself before I ate enough of the bacon to react. If I can just take a Benadryl and be fine, I will consider my life changed. Not that I would assume it’s okay to just eat whatever I want and pop a Benadryl, but it would certainly ease a lot of the anxiety I experience on a near-daily basis. Also, since pregnancy I think I’ve developed an allergy to shellfish. I believe it’s unrelated but interesting to hear you’ve reacted now to legumes… I wonder if one food allergy can increase risk for another? I’m seeing the allergist in four days but wondered what the collective group thought or what experiences people might have that are similar?
I had very similar reaction. For literally 20 plus years I was told I had ibs. When I had my kids I was surprised how prepared I- it was honestly not as bad as the pain from this reaction. Last February I finally got diagnosed and I have been able to safe myself some reactions with Benedryl. Very cooked backin or bacon bits has not bothered me. I had a donut one day and started with the stomach pain and itchy hands. Realized it must have been cooked with animal lard took bendryl and was good. My number was low- just a 2.8 or so. years ago I thought it might be a shellfish allergy and stopped eating it. But I was never a big shellfish fan and looking back probably had shellfish appetizer before a filet dinner. Good luck to you!
Justin, I had the same reaction with it being my stomach, it always happened in the middle of the night because I only eat once a day, dinner.
the last attack i found myself crawling back to bed because i was unable to stand all the while thinking do i need to call an ambulance?
but i could not even scream i thought for sure I was dying. after 20 years of this i decided duh time to see a doc. None of my attacks had been as severe as the last one but they were still serious events. I had hives from head to toe, mine lasted usually 2-4 hours. After i would feel OK but i would tremble so bad the bed would shake due to my sweating from head to toe to freezing cold. i lucked out, i saw the allergist and he said “your’e allergic to meat” and i was stunned I always thought it was lactose intolerance ..ooops! The silver lining to all of this is my triglycerides went from 260 to 140 in the past 6 months since giving up red meats. I’m all about chicken and turkey now and go to bed and know yay no sick tonight! But learned the hard way that soups are a no no unless i make them because most places use beef broth.
Its good to know I’m not the only stomach symptom one out there! Good luck to you too!
I too had only stomach pains for several weeks. Was taking antacids but nothing was helping. Dr thought is was gallbladder. It took hours for the pain/burn in my middle stomach to go away, then it was just magically release. It progressed into hives last week and a trip to the ER. Got my test results back today and confirmed I was positive!
Thank you Justin!!! This is exactly what my son is experiencing! Your testimony is convincing me to keep on it!
I almost died from Alpha-gal. I spent three weeks at Mayo Clinic and if it weren’t for Dr. Tina Merritt, I would have died.
I dont eat mammal
Dr Tina Merritt just diagnosed me with this allergy too. After reading these posts I feel pretty blessed that my symptoms have maily been stomach pain, diarrhea (sometimes a few hours after eating meat) and skin rashes. Dr Merritt is a VERY good Dr. I also have allergies and a gamma globulin deficiency and Dr Merritt is managing my care for that too.
Mine started when I was 19 years old. I’m 59 now. I came down with a debilitating illness my sophomor year in college and had to drop out. My parents took me all over the country trying to figure out what I had but even Mayo Clinic couldn’t come up with any kind of diagnosis. It took me a year to recover and soon discovered I couldnt eat red meat. My doctor thought I was nuts and told my parents it was psychosomatic. I was put on tranquilizers that made me feel horrible. I finally quit taking them, went back to college and finished my degree. I still can’t consume any mammalian meat without a severe allergic reaction.
I have the reaction also. Just wondering if allergy could be passed between mother and child while pregnant. We had our daughter two years ago and I still will not let her eat any meat. We actually had her tested and she did test allergic to Lamb.
Christine–I was pregnant when diagnosed with this and was terrified it would be transferred in the womb. I’ve been told by both my OB and allergist that it’s “highly unlikely,” though there isn’t enough research specifically on this exact question to say definitively yes or no. I would love to get in touch with you as this progresses to hear more about how your daughter is fairing and if she seems to be alpha-gal intolerant or not. My daughter is only 4 months so it will be a while before we can test her!
I have just recently been diagnosed with this Alpha Gal allergy. My Allergist/Immunologist told me to also avoid dairy. Is it nec to totally removed dairy too? I appreciate your input. Thank you
I have not removed Dairy as yet, do occasionally get some stomach discomfort from dairy but not bad. Not even sure it is related to the allergy. And I personally get severe reactions to alpha-gal meats, before diagnosis I went through what turned out to be anaphylactic shock 25 to 30 times. Doctors had no clue I even had an allergy, thought it was my heart. Even after they figured out it was an allergy it took years before I was diagnosed with alpha-gal. Would lay down quickly due to low BP and rapid heart rate, take two Benadryl, one swallowed the other chewed and kept in my mouth and something cold under my neck to constrict the vascular system to help with the low BP to my head. Was pretty rough, no desire to ever eat alpha-gal meats again.
My husband also had severe analphlaxis. No hives or itching. He would have extreme flushing, sweating, blurred vision, life threatening hypotension and unconsciousness. For five years they thought it was his heart. Just diagnosed last month. Praise God!
I cant eat any dairy at all. I read all labels and you need to watch out for gelitans too like marshmellows.
I’m a Missouri rancher who developed alpha-gal in Fall of 2012 after many deer tick bites due to a mild winter & drought. Mine is probably a “worst case”. I had simultaneous severe rashes, urticaria, swelling of various extremeties, and delayed anaphylaxis with swollen tongue, throat. I had 4 ER visits & went to 7 doctors–including a university internist–who were of no help. Even though I felt meat may be a culprit, all doctors told me it was “impossible”. I was prescribed steroids, which nearly killed me. Even the VA allergist told me it was “impossible to develop an adult meat allergy”. He wouldn’t do serum tests & skin pop panels showed nothing. By this time I had lost so much weight I was a walking skeleton, my intestines would even swell, & my heart was failing. I finally did about 400 hours of Internet research and ALL symptoms fit Alpha-Gal. I took the Univ of Virginia info to doctors and they all rejected it. So, I finally found a “tick” allergist who ordered proper serum tests & diagnosed me properly—my readings were in the 300s. He reports this ignored disease is “epidemic” in my rural area and is killing many, especially elderly. Since lesser-symptoms seem to stop at IBS, I wonder if many IBS sufferers don’t have Alpha-Gal and need to avoid red meats/milk in their diets? Bottom line: My family physician still isn’t interested! What is wrong with doctors today? Bless all of you with this cruel disease. We need big-name alpha-gal & lesser-known tick diseases research! All my doctors knew of was Lyme.
Larry, I also am in Missouri and I feel your pain. The docs thought I had fibromyalgia, which is mostly as a “default diagnosis.” I had to learn about alpha gal from 2 friends of mine, hunters that had happened to read an article about it, thank goodness.
Hello! I have been suffering from this allergy , too. Visited the ER several times, all were severe reactions, including collapsing at the ER lobby. One day i noticed that it happens hours after I eat Beef, so I told my Physicians, but they have never heard of beef allergy! Then my daughter saw the CNN news. I will now go to my physician to be tested. What a relief!!
I was diagnosed with this allergy a few months ago. I have become extremely sensitive to all mammalian products including all dairy.
Even though I eliminated all obvious mammalian products from my diet, I was still having daily anaphalaxis (trouble breathing, hives, stomach cramps). My doctor did some research and found out that many allergy medications (including Claritin, prednisone, some inhalers, some forms of benadryl and cingulair) contain lactose. Although pharmaceutical grade lactose should be relatively pure, it still must contain small amounts of alpha gal. My doctor changed around my allergy meds to avoid those that contain lactose and my daily reactions stopped. If you are having reactions and don’t know the cause, the medication you are taking to control your allergy may be making you sick!
Hopefully this information helps others.
I am still breaking out and I have cut everything out. I read all labels on everything. What are you taking now that is working on you? If you dont mind telling me. I take claritin and benadryl! I didnt know they contained milk products.
I now use Singular 5 mg chewables (10mg has lactose), allegra, and benadryl tablets when necessary. Epipen and albuterol are OK.
Things to look out for in medications: gelatin (any gel caps), lactose or lactose monohydrate. It should be listed in “inactive ingredients” on all over-the counter meds. Have your pharmacist check for those ingredients.
Lactose is extremely common in meds. It is in pepcid, prednisone, all forms of Zyrtec, most forms of claritin, some forms of benadryl (which can also contain gelatin), advair.
Apart from medications: I had lots of minor reactions to bread products (that did not list any obvious animal ingredients), probably from cross-contamination. This disappeared once I started using my bread maker. Almost all candy contains either milk or gelatin. Many juices contain calcium lactate, which can be from animal sources.
Thanks for the reply. I will be changing up some of my meds now that I know they contain milk products. I am really glad I have found someone else that has this allergy. People look at you like you are crazy when you tell them you can’t have meat or dairy.
In addition to what Cristy said, you need to watch for whey also. Whey is in all kinds of things. Also, most people believe that Soy products are ok, but most of them contain casein which is the protein in cows milk. My daughter reacts severely to all of this. I’ve learned the hard way and just because a certain brand may not have one of these ingredients listed, doesn’t mean the food manufacturer won’t change the ingredients. Always re read all labels to make sure. The only thing that helps a little for my daughter is bendadryl. It doesn’t stop her reaction, but helps. Good luck!
My husband is waiting on test results, but if this isn’t what he has I will be greatly surprised. Around 18 years ago he started with the reactions…hives, swelling, anaphylaxis, you name it. For almost 3 years he went from doctor to doctor, with no answers. He also was treated like it was all in his head. Isn’t that great that when doctors can’t tell you what is wrong it means you are crazy? And he knew it had all started after a tick bite. He finally quit telling the doctors that it started with a tick bite because so many had told him that had nothing to do with his reactions. After about 3 years it went away, until about 3 weeks ago. It has returned unfortunately. He doesn’t remember a recent tick bite, but he has been recently working around horses that are covered in ticks. As I mentioned, we are awaiting the alpha-gal test results. After reading so many of the stories above, though, there are so many similarities that it almost HAS to be alpha-gal. Does anyone know if this runs in families? I am wondering because if there is any evidence to indicate that it does, I am going to be much more insistent that my kids use tick repellent more consistently.
My daughter and granddaughter and I all have the Alpha-Gal allergy and we all have the same symptoms (gastro).
Do you have any information on Alpha-gal in Dogs. I believe my dog (who was bitten by a LST) may have this allergy. Can they be tested for Alpha-gal like humans?
Hello Reggies Mom
It is an evolution thing just like our vitamin C defiency that humans and bigger apes do not have alpha gal inside.
All other mammals have and therefore cannot have this allergy.
Animal Alphagal is the main reason pig organs cannot be transplanted to humans
Can anybody answer this
Is the alpha gal compound also found in animal glands? Over and over all they say this is an “allergy to meat”. IS A GLAND CONSIDERED MEAT and do glands and organs like thyroid , adrenal, spleen contain the sugar compound or not? THIS is an important question because Dessicated Animal glandulars are used in prescription thyroid and adrenal medications and are considered superior to synthetics by many holistic people. People are using this to get well, but if it is creating a low grade inflammatory reaction it could be more a poison than medicine to alpha gal allergy sufferers. Companies like standard process and biotics sell glandular products to support organ functioning that do not need a px I have called the pharmaceutical company that makes Armour thyroid med(dessicated pig thyroid) and the pharmacist there had NO CLUE and indicated it would be low priority for them to explore. I have asked representatives from both the supplement companies and have not received an answer. I have called the pork council and have not had a response. Someone has go to be able to run a simple test and answer if the glands contain the sugar. This question expands to bone broth and marrow- some people make stock from simmering bones for a long time to pull out the marrow and consume it as much as a health tonic as a good soup stock and also to gelatin caps in supplements. yes or no- allergen? As for the awareness website- they could also look into it and clearly state that it includes all animal by products or only the flesh people eat for food.
I was dianosed with alpha-gal a little over 2 years ago. After reading over the posts here – the one thing I dont see mentioned that can cause a reaction is GELATIN. Gelatin comes from the hoves of cows & is hidden in a lot of recipes. Most of our medications (capsuled) have a gelatin coating. Whey & Milk also causes me problems – but I can eat yougurt & cheese. Go figure! So glad to have found this site as I dont know anyone else who has this allergy & have felt like Im out in left field all alone…..
What is the name of the blood test for this?
I have had it for about 10 yrs now.
I was diagnosed in Aprl 2013 with Alpha gal following a anaphalytic shock episode after eating surf and turf. I tested as a 2+ but cannot eat any dairy, mammal products or byproducts, or gelatin products. Every person is different so avoidance is the only sure way to protect yourself. My allergy has progressed from horrible hives, low low blood pressure, extremely slow heart rate, difficulty breathig and swallowing to now more stomach cramping, milder hives and lack of energy. I have been bitten the last two summers by lone star ticks so my hope of ridding myself of this allergy doesnt seem in the near future. I have however improved my health tremendously on this diet! My staples are: coconute milk canned for alfredo sauces and desserts, nuts in everything, nutrititional yeast is a good cheese substitute and enjoy life chocolate chips!! These are my only treats and lots and lots of veggies, fruits, and chicken, fish and turkey.. The good news is that this allergy has forced us to eat as our ancestors did and is the most natural food sources for your body to digest and use!!! My blood tests at 48 yrs old are fantastic!! No high cholesterol anymore! In one year this allergy changed me for the better!
Oh and the weight loss is good also…. 34 pounds in 13 months!!!! The best way to deal with this is to try and pull the positives from it as it is life changing and that is what my comments hope to help you with! And all the money you save from not eating out is good too! I dont mean to downplay how horrible this allergy is but these are my survival tips…. My husband has went off his diebetes, high cholesterol, and blood pressure meds on my new diet… So that has helped him beyond belief.
I have had. Alpha gal for years..it’s getting worse not better..now even touching leather is giving me hives..cant even get near dairy..this is a very depressing problem. I wish there was more research on this.
Hi there. It has been about a year and a half since my diagnoses of high alpha gal allergy. In the hospital for 3 days, sent home on 17 different medications, ultimately just saved by God’s grace.
I wanted to pass on a few supplements that have made a world of difference in hope that they will help someone else. I don’t sell any of these. Most can be found on Amazon. Because of these I don’t have to take any anti-histamines, which I am so thankful for. (obviously I steer clear of mammal related products, including bovine, pork and gelatin in my supplements. Here’s the list!
The first is Protandim. It’s expensive, but it has taken every bit of my joint pain/inflammation away. I’ve tried weaning off of it, and the awful knee pain came back. The knee pain was my first symptom after tick bite, then the hives.
The next is Apple Cider Vinegar (Braggs brand with “the mother”). Drinking 1 T of it mixed with water 3x’s a day has kept ALL bugs off me, and kicked my seasonal allergies as well:).
L-glutamine is great to rebuild the integrity of your intestinal lining which the tick bite greatly compromises (which ultimately leads to food allergies…one of the reasons why it takes at least 3/4 hours for the allergy to show up…has to wait to get digested in the gut, then leaked out causing allergy).
A great probiotic has made a world of difference as well.
Tons of vitamin C.
High quality fish oil has done great things in restoring my overall body (skin, hair, etc…) which suffered also after the tick bite/inflammation.
Anyway, I appreciate this site greatly. Hope this has been helpful.
I had something new happen to me yesterday. I walked into a restaurant to visit with some friends for about 15 min. while they ate. I had a bit of poison ivy on my arm. While sitting at the table, It started itching like crazy. I started the hive breakout on my right forearm around the poison ivy and in my left arm in the crease. This caught me off guard and I so I took my liquid Benadryl and checked to make sure I had my epi-pen. I got worried because having 3 Eagle scouts in family, we have been in the woods and I have received 3 tick bites in TN this year already – ugh. I didn’t know if I had been in contact with something on the table or breathed it in. However, after the reaction had subsided and I could think logically again, I reminded myself that this is not how my reactions occur. For 7 years, I have always been 4-6 hours delayed in reaction time. So I thought back and realized I had kissed my husband good-bye (just a little peck) after he ate a rib, not thinking. He has a small goatee now and I’m afraid he had trace amounts on him that I ingested. This is the only logical reason I can come up with. So I’m posting to give a warning to be careful about facial hair traces. Thanks for this blog. It’s very helpful.
Laura…I have also had a reaction from kissing my husband after he has eaten beef, or drinking from his straw in his drink. I have had this allergy for about 47 years. Just recently discovered that it has a name. I’m so pleased to find this out.
Has anyone come up w/ an easy way (or seen/used a product) to keep an emergency pack or carry epi-pens? Thinking of my husband who was recently diagnosed. Business, baseball, yard work – how does one always keep a supply close by? Was thinking of a belt holster or something similar but he wouldnt want it to show. Thoughts?
Well, I’m calling an allergist! That’s it! With the help of an Accupuncturist for an unrelated reason, I weeded out pork for a number of months. “Coincidentally”, as a result, I figured out I was allergic to pork. Unexplained itching and burning and hives that got worse over a 6 yr period. Doctors thought stress then a “random” allergy and prescribed a daily dose of Allegra. (Thanks.) Unfortunetly, a few days ago I had a reaction and yet another today. So, I started researching again and found a bunch of blogs on this “alpha-gal” allergy. Good grief!? Please don’t let this be happening to me… But, my fear is, it is. Tick bite scab on my side,still, flaring up and down, itching off and on for now over a month. Not uncommon hear in New England- at least for this 45 yr old! *sigh* (FYI: 1 son of mine has Lyme as well and has has a peanut allergy since birth.) wish me luck finding a doctor hear who gets it.
I have just been diagnosed w/alpha gal allergy after 2 severe reactions (bad hives, full body rash & breathing issues), & a blood test to confirm. I’m making it my personal crusade to make sure everyone knows that this condition exists, & if you have to be outdoors, use insect repellent.
I got 2 tick bites (VERY tiny ticks) while working in flower beds in my own back yard. I will now be treating my yard & flower beds for ticks as often as recommended. In hindsight, if I’d known what those 2 tiny little tick bites would do to my life, I would have 1) stayed indoors or 2) doused myself in bug spray. Just sayin.
Hello all, I have the same problem with all these foods but I never get “allergy” symptoms. I get this horrible acidic, debilitating stomach pain that has me on the floor. I am a land surveyor and get but by ticks all the time. I got tested for food allergies and beef pork and milk were level 5. Level 6 is anaphylactic. Does anyone else only have the stomach pain/gastritis I have or is everyone getting a hives etc
This is the same thing that happens to me. No hives, rashes, or anaphylaxis. It feels like a lump of lava in my stomach for 6-8 hours, then goes away like nothing ever happened. I was actually on this site looking to see if anyone else was like us, since I am wondering if our symptoms are more of a treatable infection rather than an allergy (I know, wishful thinking). My doctor told me to carry an epipen (which I will) just in case, because even though my symptoms are different now, I did test positive for the alpha gal and he would rather me be safe than sorry.
Dan and Melisa: I have the same reaction after 6 to 7 hours. My doctor also gave me an epipen “just in case.” Seeing so many recent postings gives me heart that there is a place we can share ideas.
You should go to an allergist who knows about alpha-gal and get tested. Your reactions is very close to mine. I had a burger one night and my husband was worried that I had stroke since half of my face was deformed because of the severe pain. It usually last for 6-8 hours and the next day I feel like nothing happened. Couple of days later I have one or two small rashes that looks like poison ivy; itchy and red bumps, the allergic reaction of my body. It heals painfully slowly. The allergic test confirmed that I have the red meat allergy and the doctor gave me epi-pen also. I put it in a small bag with pain killers and cleratine which does not knock me off for a day. I tried other “non-drowsy” allergy relief, but so far this is the only one that I can take and go. I am sensitive to milk, cheese, or other dairy products, but I found out that if I had a light stomach pain due to dairy products and drink some alcohol, it reduces the pain and don’t have to take any medication. I try to avoid any red meat and I did not dare to try to see how the alcohol works on that. LOL I said try because often find out that the label of ingredients are meant very close to nothing. Some chicken product contains red meat even if it’s not on the label, and we found out couple hours later. I avoid all fast food restaurants. The safest place to eat is Whole Foods Market, never had any problem with the foods there.
I really hope that it will fade away fast, but as I saw someone is having problems for decades, I started to worry.
I get the stomach pains and they are severe. I have taken Benadryl, but that is not helping for stomach pains. I have been to the ER once and have probably needed to go again, but it will subside after about 6 hours. Intense pain at the top of the stomach and hurting through to my back. What do you take when these episodes happen? I also get horrible hives and trouble breathing if I eat beef or pork.
Good thing is that my test number has dropped from over hundred to 45 in a half Year with no bites.
Bad thing is it is probably still deadly dangerous.
Ate three spoonfulls by accident of Coleslaw with some milk dressing and had four bleeding wounds 6 hours after.
I am also sensible to normal eggs but not to those from my own hen that roams free in garden.
Am speculating that normal concentration camps hens get some pig leftover to eat and alpha-gala transfers to eggs?
I have had this for almost two years, me question is why does it not trigger every time? I thought after the tick bite healed it might so I ate beef several times with no problem then today I ate spaghetti with hamburger and around 4 hours later I was thinking I might die. Couldn’t feel my legs or feet or hands, couldn’t stand, severe vomiting, hives from head to toe and sweating. I take an over the counter antihistamine that usually stops the reaction within minutes but today I had to chew up 5 of them before it stopped. My husband drove me to the ER but it stopped just before we arrived. Since then, it’s been about 4 hours, I just feel weak and sleepy and very cold. I ate the same spaghetti last night so why didn’t it bother me?
I think this is the real question – why a reaction sometimes but not others?
Alcohol makes it worse for me.
Normal headache pills containing
salicyl acid (weeping willow tree)
are of limits also.
My doctor’s office called and told me I tested positive for Alpha-Gal after I already tested positive to an allergy to beef and pork. They didn’t tell me any numbers, only to avoid beef, pork and lamb. Reactions were mild, as I could never figure out why I was feeling so tired and having shortness of breath + breaking out on my chest. I didn’t equate it to a food allergy. Have other doctors suggested an epipen?
I’ve just found out that I tested positive for Alpha Gal. Two questions: Why are my breakouts so severe after exercising and how long does it take to completely be rid of the hives once the meat is removed from my diet?
It looks like so many people reported that the exercise intensifies symptoms. I don’t know why, but guessing that it has a connection to digesting food. I do not get hives right away rather couple of days later, but I can tell you that non of them fade away yet. The first one I’ve got was in April of this year.
If your symptoms are severe, you need to be very careful of eating. The best thing to eat is vegetarian/vegan if you go to restaurants.
I just got diagnosed with elevated alpha-gal after a severe reaction and ER visit in June. Just got the final results today from the blood test that was taken last week. I am still in shock as to how this all of a sudden came on at age 61! It’s also very scary to me how bad the one reaction was – allergist said I was just before organs start shutting down when I got treated at ER. Of course, I am extremely thankful that they found out the cause but now looking at how my eating habits have to change is disappointing. Does anyone have any suggestions as to how to ask for “special treatment” in restaurants? I can’t have cross-contamination (from grills, utensils, etc.). I, of course, am not used to this at all and I don’t want to come across as a prima doña to the restaurant or the people I am eating with! I guess this will get easier as time goes on but right now I am just overwhelmed! Thank you for having this site to step me through this new stage of my life!!
J. Alexanders was very accommodating. The mgr even came out to discuss the cooking methods. (not sure if you have one near you!) Good luck.
After having several very bad reactions when I didn’t make a big deal about my food allergies, I now make it *very* clear to the server that I have a very severe food allergy and that my food must not come into contact with any mammalian product. You must tell them to make sure your food is handled safely–how would they know otherwise? Its best for everyone–neither you nor the restaurant wants to you to go to the ER.
Hi Sharon – I am 55 year old grandmother and was recently diagnosed myself. I am overwhelmed, as well! I have stayed out of restaurants because I am afraid of cross-contamination. I do go to Zaxby’s because they seem to be okay. It’s an inconvenience but I know it could be worse.
Count us in. After a meal of meatballs my 4 yr.old broke out in hives, which reoccurred for several years. This is in the US but he is from Eastern Europe. Pediatricians were not worried. Benedryl worked. Then, he ate meat lasagna, came out of his bed coughing, said red flag words, “Mommy I’m itching” then I knew he was anaphylactic. Benedryl ,then the doc, then the allergist the next am who did not know of the tic allergy. I read it on the internet and gave him the print out. He tested positive ige for beef and positive apha gal, but nothing else. He so far is ok with dairy but now I will watch it! Buffalo is also included. Nice to have this website.
Update-kosher gelatin is made with fish and never pork (unless there is cheating which is rare because there is strict supervision in the Orthodox kosher foods.) Kosher vitamins and gel caps which hold the vitamins, etc are made with fish or vegetable and never pork. Same with kosher marshmellows. Call the supervising companies such as the Orthodox Union and speak to the food supervisors who will give you ingredients in great detail, as this is part of their job.
My tests just came back positive for the alpha gal allergy. I was bitten by a tick on Mother’s Day and by Memorial Day the symptoms started. My symptoms are similar to Melisa in an above post. No hives, rashes, or anaphylaxis. About 4-6 hours after consuming beef, lamb, or pork I get this seering burning pain that lasts for 6-8 hours then goes away like nothing ever happened. Contrary to some of the other posts on this forum, a couple of large glasses of milk will help ease the pain (but only a little). That is really a moot point, since I will not eat beef, pork, or lamb from now on. My doctor told me to carry an epipen even though my symptoms are different now, it doesn’t mean they won’t change. I have an appt. with an alergist next week and plan to see an infectious disease specialist as well.
My little boy was diagnosed with this allergy at 2. He can have milk products but can’t even touch a farm animal or he will immediately break out wit hives. Glad to know about the kosher gelatin, anything with gelatn breaks him out. Does anyone know of a place I can find recent research on children with this allergy?
Sharon, our family has been dealing with this allergy for 2 1/2 years. We’ve only ran across a couple people that weren’t accommodating. Most people go out of their way to keep you safe. The first thing I do when we get to the restaurant is let them know I will ned to speak with someone about a food allergy. Typically they will go get the manager on duty. I tell them my son cannot have any cross contamination. Them explain this includes work surface, utensils, pans, and ask if the person preparing his food could change their gloves first. Them I move on to the deeper details to find out what I will be able to order for him. Will the chicken be cooked in grease that has cooked corndogs, or will the grilled cheese be cooked on a grill that has cooked hamburgers. Once I hash out these details were good to go. Most people are over the top accomidating. One guy actually made chicken strips from scratch. Burger King is the only place I will drive through. They have seperat beef and chicken stations. I still tell them it’s for the little boy with the beef allergy in case they are short staffed. I know this is a lot of info, but I remember the trial and error days and how scarry it was. I hope this help you out some.
Hi, just found this awareness group and am really interested. I’ve been vegan for a few years now and live a normal reaction free life. However it hasn’t always been this simple. I spent 4 years working for an expedition company in Scotland spending around 200 nights a year in the outdoors. In that time I turned vegan on exped (two week on and the two off) and ate a normal diet out with expedition. I quickly developed reactions in my off time which after a fashion I assumed was an intolerance to meat due to periods of veganism. Symptoms started with itchy palms, moved onto itchy thighs, legs on fire, hives, elevated heart rate, tight chest etc. this usually happened within a few hours and stopped a few hours after taking several anti-histamines. The tick connection has got me wondering. I’ve had hundreds of ticks in the last 4 years and was wondering if anyone had any advice on this. I’ve struggled to get doctor to give me tests for lymes let alone this and was wondering if anyone had any experience in Scotland. I’ve eaten an entirely plant based diet for the last few years now so seem to have the reactions under control but would love to hear other folks thoughts or experiences. Thanks.
I still haven’t figured out while after exercising I break out in hives. No mammalian meat and trying Allegra. Never happened before I got the Alpha crap. Really pisses me off as I love to work out, but hate the itchy hives for 3 hours. HELP PLEASE??????
I don’t know if anyone has weighed in on this. I found any skin stress was where the hives came up. Sun burn, tight cloths sweat etc. My understanding is that you should not be having attacks unless you are ingesting something with a mammal origin. The last attack I had was due to cottage cheese. Good luck.
Look into the Allegra – I believe it has magnesium stearate in it.This can be derived from milk some times unless otherwise stated I believe.
I have found that you really have to dig deeper into the additional ingredients of things.Once I found out I had alpha gal I spent about 6 months looking every ingredient up on my phone before eating it. It seemed to stop a lot of problems I was having.
Also check your lotions and things many of these have glycerin in them. If you are working out and your pores are open lotions or bath products may be getting into your skin causing the problem. I switched all my soaps and things to more natural. It stopped the constant itching I was having.
Need help please!!!
I got bite by two ticks about two months ago and Over the past month and half anytime I eat red meat or pork and even dairy I break out in to hives all over my body ,my chest hurts, my back feels like it has an air bubble trapped in it and my hands feet and lips swell! My alpha gal test came back negative! I have not had an episode for a week but I have stuck to fins and feathers and very little dairy if any. I ate chicken nachos w/cheese about a week ago and got a little swelling of my lips and a small patch of hives. My doctor is at a lost! Is any one here from Texas that I can get in contact with and try to figure this out? My test was done the day after I had an episode after eating bacon and I had to take a tremendous amount of benadryl!!!
I got bit by two ticks about two months ago and Over the past month and half anytime I eat red meat or pork and even dairy I break out in to hives all over my body ,my chest hurts, my back feels like it has an air bubble trapped in it and my hands feet and lips swell! My alpha gal test came back negative! I have not had an episode for a week but I have stuck to fins and feathers and very little dairy if any. I ate chicken nachos w/cheese about a week ago and got a little swelling of my lips and a small patch of hives. My doctor is at a lost! Is any one here from Texas that I can get in contact with and try to figure this out? My test was done the day after I had an episode after eating bacon and I had to take a tremendous amount of benadryl!!!
I found that I have Alpha-Gal about 6 wks. ago. I have flu-like symptoms and body weakness. I need to know if anyone else has this and if it may be caused by something else. Even my allergy Dr. doesn’t seem to know much about alpha-gal. I have a sensitivity to almost any foods, it seems. My tongue and throat feel strange with a lot of foods that I should be able to eat. I am loosing weight away too fast. I can’t eat dairy products or even butter or mayo for vegans. I will appreciate any helpful info. I can get.
Hi Shirley, I’m having similar problems now where throat/tongue swelling seems to return right after I eat, no matter what I eat. I’ve actually been in the hospital for the past two days since it is causing breathing problems. How long was it until your symptoms were totally gone? It’s been 6 days and mine are still coming back full force…
For the last year and a half I have had about 6 hive reactions. I live in the Hudson Valley in NY which is has the most dense tick populations in the country. My hive reactions are delayed by about 5-6 hours after eating. The only link I could make was meat so on a whim I searched the web for meat allergies and discovered this research. My question is I have eaten meat at times during this without a reaction and wonder if fattier meat would cause more of a reaction than lean meat? How do the levels build up? If they are low could you only react occassionaly or to fattier meat? I tried an elimination diet and when I tried to eat some lamb I broke out in hives 5 hours later.
I live in the Hudson Valley- the most dense tick area in the country. Over the past year or so I have been having delayed hive reactions, about 5-6 hours after eating. The only connection I could make between the meals was meat. I tried an elimination diet and had some lamb one night and broke out in hives. My own research lead me here after searching the web for ” meat allergy.” My question is- how do your alpha gal levels get high? If they are low can you have meat sometimes and not react? Can fattier meat cause more of a reaction?( greasy lamb vs. Lean pasture raised beef). I ask because I have been able to have a little meat occasionaly without reaction but the times I have reacted to something I had eaten a couple hamburgers or 3 hot dogs or a large cut of meat. I have been able to have a couple slices of bacon or salami and be OK, so I am unsure what to think.
My husband, an alpha-gal sufferer, had one of his most severe reactions to date after sharing a Twinkie with our daughter. He is usually so cautious about ingredients, but didn’t consider that the Twinkie would contain beef fat. Ew.
My sons, ages 5 and almost 7, vomited this morning after eating beef last night for the first time in months. My older son has vomited one other time about 4 hours after eating a combination of ground venison and ground beef tacos. Both of the boys have a history of tick bites (without reactions.) They have both been struggling with diarrhea and stomach aches for a couple of months and we don’t have an answer as to what causes it. We typically eat chicken, fish, pork, venison and beef. We have been out of venison and beef for a couple of months (since I get it in bulk and keep it in the deep freezer.) It’s very strange that both boys woke up the morning after having beef for the first time in months and both vomited. No one else is sick. There are no other symptoms. Is it more likely to have a reaction to beef than pork? My boys don’t drink milk. My older son also vomited a month ago a few hours after eating. I cannot remember what we ate on that occasion. Is is typical to see just GI reactions without rash or hives?
I appreciate any input!
Okay, as no one has replied to my situation with regards to breaking out in hives after exercise – I will add this to the Alpha Gal mix. I have researched detergents and have found that many use glycerin, derived from animals. I can only assume that that mix, combined with sweat has kept me breaking out where my workout clothes touch my skin. I am going to try and start a blog or web page in the next few weeks to bring us all together to share this kind of info.
Hi Beth. I used to run but have not in several years and I would many times get hives after a run. I was just diagnosed with Alpha-Gals for certain today and what you are saying about the detergents makes sense to me.
Good day, I have had AG for quite a few years now and as it was unidentified for some time as just odd hives it is now much worse and clearly Alpha-Gal. I wanted to give thought on your comment about exercise and hives. I have had the same reaction to exertion / exercise, only I had the added trouble of difficulty breathing and excessive fatigue after exercise ( not normal fatigue). It felt like I would have an allergic reaction when I would do a good workout. So I had to find out if there was a connection to my allergy ( Alpha-Gal) and soaps, lotions, deodorant or laundry detergent. What was causing this reaction that had never happened in earlier years. When we exercise what does our body do, it burns fat, it detoxifies it’s self naturally, it pushes adrenalin through the system. An ER doctor explained that is the same effect as the epinephrine the docs give a patient in the case of a serous allergic reaction, because it processes the antigen through the body and allows you to recover. I have done some research on cleansing the body of toxins. I found that cleansing can aid In weight loss if done correctly, in that research I also found that loosing weight can release toxins, proteins and medications our fat cells stored over time. When we loose weight we inadvertently release the toxins into the blood stream to be processed and filtered out. Keeping in mind the fact of my Alpha-Gal and connecting the many things my body may have stored up in the fat cells, there is a strong possibility that the protein in the food we have eaten and stored are then released when we burn fat during exercise. That release can cause a reaction in sensitive people or systems that are under stress or over burdened by existing illness or medication regimens. When we cleanse the liver, bowel, blood and so on there is a process we need to follow in order to avoid causing more stress on the system. Exercise is a kind of cleansing in the way we are processing out unhealthy fat and toxins while helping the body to form good healthy muscle and tissue development. So we know the filter organs such as the liver and kidneys are the place the body processes out the toxins, proteins and such, then it would stand to reason they are important to keep clean to to their job well. When we flush the body of toxins & etc we are requiring these organs to do a bit more work and the filters are bombarded with more to process so they need to be strong, and healthy. I have tried a regimen to cleanse the liver, kidneys, bowel and the blood then eased into an exercise regimen. Not all at the same time but over a few weeks to process out as much as I can so the toxins process through at a faster rate and don’t sit around in my system causing trouble. It has helped with the hives and difficulty breathing as well as endurance. I use natural herbs and don’t eat ANY processed food. I can’t tell you what process to use for your body because we are all very different so I encourage you to do the research so you can work out what will best work for your body and health concerns. I agree with you on the laundry detergent as well. There are many outside causes that have affect on our body. I also found connections to the ingredients in our soaps and lotions ( let’s just say all outside products we use) that aggravate our allergies. AG has helped me not be quite so lax about the products I use. Thank you for your post. S
Stephan, that makes perfect since. I gained around 25 lbs in the last 3 years and I’m now losing the fat and building muscle. I was a huge protein eater – (not much red meat), but loved all pork. I imagine all of this is coming out in my hives. Sure wish I could find a medicine to block the proteins. Thanks for your post. B
I have been having what I thought were random reactions for years with no rhyme or reason to them. The first one was in 1993 or ’94. Countless trips to the ER and then about 2-3 years with no reactions. I have had about 6 in the past year and a half and the last one was Labor Day and it was really bad. I used my Epi Pen for the first time in all these years. My Nurse Practitioner did a complete blood workup and lucky for me she was knowledgeable enough to test me for Alpha-Gal. I tested positive and she immediately sent me to an allergist with instructions no to eat meat anymore until I had further testing. Today I was tested and told that I am indeed positive for Alpha-Gal and can no longer eat meat. It was explained to me that over the years each tick bite I got made this worse. I have lived most of my life on a farm and in the woods so I have had many tick bites. Maybe having doctors and living in a more rural area has made them more aware of the possibility of tick bite related allergies and illnesses. Either way I am glad I found out what the problem is.
New flu vaccine with from dog kidney.
Since dogs are mammals, I wonder if this new vaccine will need to be avoided by alpha-gal allergic people?
Holly Springs, NC, Novartis plant first maker of revolutionary new flu vaccine called Flucelvax:
Another tick bite today. I am so bummed. How in the world does anyone avoid tick bites if you live in the country?
I just had a reaction to pork and beef for the first time this past weekend. I haven’t had a reaction since Sunday morning. My reaction happened with 30 minutes to 1 hour after eating. As far as I know I wasn’t bitten by a tick in the last year. I have been reading up on this and still wonder, is it possible I could have developed an allergy related to Alpa Gal?
I was just diagnosed today, and it explain s a lot but scared at the same time. I am a VA patient and was told I am only the 2nd patient at the Fayetteville Arkansas VA to be diagnosed with it. Don’t know how to feel about that.
What words do I look for in the ingredients list of foods so I can avoid all mamillian contact? I’m sure there are ingredients made from pork and beef hidden in lots of our foods.
I found a list. WOW!!! At http://www.pets.org/living/beauty/animal-ingredients-list. A very extensive list.
My question is, WHY IN THE HECK ISNT ANYONE DOING ANY RESEARCH TO FIND A CURE OR FIX FOR THIS???!!!!????!
That blows my mind that there are no new data researches or information about how to deal with this other than to just avoid meat… I tested a 16…. Doc said to avoid red meat…..
I share your frustration. Unless half or more of all of Holllywood and the Senate/Congress where somehow infected with Alpha-Gal… Never will there be a cure for this.
Anyone who believes otherwise… You may be interested to know that for a nominal amount of hard earned cash you may have a speck in the sky named for you.
I had a severe allergic reaction about a year ago…anaphylaxis and the whole deal. Went to the allergist and found out I’m allergic to red meat like the rest of you folks. He said, however, that I can eat pork just not all the time. Well last night we were at the Mexican restaurant and I had pork chops with rice and beans. That was at around 6:30 last night and sure enough at about 4:15 this morning I began feeling sick to my stomach and then hives on my entire body and finally, difficulty breathing. Whipped out the old faithful Epi Pen and stuck it in my leg. Anyways, I’m guessing pork is out of the question now, but I’m seeing people on here saying they don’t eat any meat. Freakin A man I gave up beef and pork, not chicken! Just wondering though, I thought alpha gal was a red meat thing, is that not the case?
Alpha-gal is a mammalian meat allergy. Since chicken and fish are not mammals, they are not included in the alpha-gal allergy.
Somewhere early on this blog someone said they had the same reactions everyone else is commenting on, but the blood test came back negative. My 16 yr old daughter is having these symptoms – complete with ER visit about 4 hours after eating pepperoni. The allergist said the blood test (which is the only one available – no skin prick test) can give false positives and false negatives, with false negatives being more common. He said the ideal is a positive correlation between symptoms and a blood test result. His suggestion is that if you have the symptoms, regardless of the test result, assume you have the allergy and take the same precautions – avoid any mammal meet, and be careful about added ingredients in any prepared food you do not make yourself. Carry and Epipen just in case!
B negative blood types can give false negatives to the alpha-gal blood test. Contact the University of Virginia allergy folks who can perform a special test.
Over about a 3 yr period after eating red meat I would wake up about 3 am with severe abdominal pain. Pepto seemed to help ease it. This happened about 4 times. Went to e.r., had cat scan, colonoscopy, nothing found. The 5th and 6th time I woke up about 2am with minor abdominal pain and itching on palms of hands, ears and groin area. Was able to go back to sleep. The 7th time after eating red meat, within about 3 hrs I had a full blown anaphalaxis attack. Whole body itching, swelling of tongue and lips. Benadryl helped. Took blood allergy test and am allergic to beef and milk. Now planning on taking a alpha-gal test. Not sure if bitten by a tick, but positive I have had chiggers. Chiggers has been mentioned in several articles too. Interesting.
I do believe that pork is more tolerable because it is much leaner than some beef products. I have not had any problems after eating pork.
Recently, I had been waking up in the early hours of the morning with SEVERE abdominal pain, bloating, etc. A few months earlier I had been bitten by a tick and a nest of ticks while gardening. I went to see the GP and got a stool sample test. Results detected the parasite dientamoeba species. I thought that this was causing the severe pain. Antibiotics were given but were unsuccessful in treating the parasite. I began to notice that really bad bouts happened after eating red meat. After researching the internet I found articles related to mammal meat allergy and tick bites and my GP mentioned there might be a correlation. 2 weeks ago I made an appointment to see an immunologist, as I was concerned I might be developing a mammal meat allergy. The day I made the appointment to see the immunologist, I had an anaphylactic reaction and was presented in extremis in casualty with marked stridor. 5mg of adrenaline eventually cleared my airways. It was a very frightening first experience of anaphylaxis related to accidental peanut intake, not meat! I knew I had always had a moderate peanut allergy, but never severe. I got my test results back today with a 27.60, score 4 IgE to Alpha-1,3-Gal, indicating very high level of IgE to Alpha Gal. Just wondering, if having other allergies, like peanut allergy makes one more susceptible to developing a red meat allergy? The test showed that I have moderate allergies to wheat, milk, crab and lobster. High levels to peanut and shrimp and very high levels to mammal meat. How accurate are these Alpha Gal/RAST blood tests? I have never been concerned with food intake as it’s one of life pleasures, but now food has become my enemy due to allergies and parasites!!!! This site has helped me realise I’m not the only one in this situation and has provided valuable information about alpha gal. Thank you!
Sorry you are dealing with so much. It seems like this condition weakens your immune system. I started having allergic reaction (rash) to the foods that I have had all my life. I saw a very good allergy specialist and he said that I have to work on my immune system. It really worked for me. I hope it does the same for you.
My uncle believes in lots of natural medicine and I don’t. I am posting this because he thinks it should be researched. His iridologist says that I should take:
LDM-100 is pure Lomatium dissectum extract in an organic cane alcohol base. This product is gluten free.
Pure Venus fly trap oil and Frankincense.
I’ve told them this isn’t viral or bacterial and they claim its just a miscommunication of my DNA. I’m not buying it and not gonna risk an anaphalaxis reaction…it even says you may have a reaction while it cleanses you. Very SCARY. Please tell me what I should tell these kind of people. Thanks.
I would like a copy of the brochure please.
My main symptoms are wheezing and some difficulty breathing. The severity is determined by 2 factors, I think, based on my experiences. The leaner the meat and the quantity eaten. Leaner and less quantity gives much more manageable symptoms. Venison doesn’t effect nearly as much as a well marbled ribeye.
I self-diagnosed about a month ago. I do not eat pork or beef and had what was dignosed as CHICKEN POX about 3 months ago, which my allergist informed me was actually a slew of larval tick bites from the Lone Star tick. Twice after eating lamb I developed severe intense itching and raisd hives in my midsection and arms several hours later. This is because the fat in the meat has to digest before the reaction occurs, so unless you habitually avoid meat you would assume the meal and the reaction were unrelated. I was told most of all to avoid GELATIN- unless it is vegan or kosher. gelatin is a bindr in many,many common food products and vitamins, so beware.
I apologize if this is the wrong place to ask this specific question. I recently found out that a friend of mine has the alpha gal allergy. She is uncertain to what she can eat when she goes out. I mean she knows no red meat obviously but is there any books out there that tell you what’s safe to eat when you go out. I have found one book on recipes but I’m looking for something that she can refer to when eating out as sort of a safety precaution. I would greatly appreciate it if anyone could point me in the right direction. thank you
I feel for your friend. I have had Alpha-Gal for over 7 years now and am unable to go to most restaurants for fear of cross-contamination. If the restaurant serves any product that originated from a mammal, there is a risk. Recently, my reactions have become more severe, not only can I not eat the obvious (beef; pork; lamb; goat; venison; etc.)but now I’m having reactions to gelatin capsules, whey, milk, butter and cheese. The only restaurants I feel safe in are the ones that serve only chicken or only fish. Good luck to your friend. This is continually being a test on how creative I can be with my imposed diet.
I really appreciate the information on this site – I’ve learned some things, like the gelatin connection… will definitely watch out for that. BEWARE, Krispy Kreme doughnuts are fried in beef tallow!!
I’m also glad people are mentioning the chigger/red bug connection. I believe they have been my trigger. I’ve had many red bug bites, several deer tick bites, but really can’t remember but a couple lone star bites, and none during the timeframe when I developed this allergy.
Another issue I’d like someone to research, is the connection to antibiotics. I had an issue with antibiotics a few months prior to developing the red meat allergy. I was prescribed 2 different antibiotics in a short timeframe which led to “C-diff”, and removal of all the good bacteria in my gut. I wonder if there could be a connection…
My allergy started out with beef, but I could eat pork, venison and bison. I had the typical hives 4 hours after eating beef, but my stomach began hurting almost immediately, and pain continued until the hives took over. Immediately after getting the worst case of red bugs I’ve ever had, I could no longer eat pork, and the reactions got worse. Stomach pain and hives 1-2 hours later, and chest pain. The last two episodes, I ate small amounts of food that had been seasoned with pork, and got chest pain. I’ve been proactive with the liquid Benadryl, and haven’t gotten hives.
A month ago, I was admitted to the hospital with chest pain following a meal where I inadvertently ate several small servings of food that had been cooked with pork. Immediately, I began having stomach distress and pain, and chest pain began 20-30 minutes later. The chest pain seemed to be radiating through my left arm.
I was taken to an urgent care facility, where EKG showed signs of heart attack, and they transferred me to the hospital. Heart cath that night showed no blockages, and ECHO next morning showed normal heart activity. EKG still indicated heart abnormalities, and heart monitor also showed irregularities during the first night.
Also, the levels of troponin – a blood enzyme that’s indicative of heart attack – were through the roof.
Interestingly, the food allergy can cause a spike in epinephrine (adrenaline), which is also an enzyme in the blood. I believe the allergy reaction in my body may have led to the heart attack. Found mention of something called “Kounis Syndrome: a group of symptoms that manifests as unstable angina and even acute myocardial infarction, triggered by the release of inflammatory mediators following an allergic insult.”
Am getting the blood test for alpha-gal soon, and really curious to see what the numbers are.
Have any of you experienced several weeks of hives prior to diagnosis? It all started in Mid October with early morning scalp itching, followed by days of burning palms and hives on my wrists. The three worst itchy scalp moments were the mornings after having pot-roast a couple weeks apart at dinner time & once the morning after Wendy’s burger for lunch & a potato bacon soup for dinner. The sprinkling of Hives continued until the day after having meatloaf made with ground chuck about 10 days ago. Then they spread like crazy and some were a few inches across. My legs looked like a red giraffe for a day. My GP advised me to take extra claratin & wait to see the allergist. After a week of that, they faded for a couple days. Now, they seem to be increasing again. I have my allergist appointment in 3 days (finally). Alpha-gal came up in my research when I noticed that the bad early mornings were after having the beef. I intend to ask about it Friday. I just wondered if I could be on the right track? I did find a tick on my ear this Summer & had an incidence in Oklahoma where we found something in our hotel room bed, that seemed too large to be a bedbug! I’m not so good at identifying bugs. I have continued to eat cheese and drink my usual lactose free milk. I wonder if that could be enough to keep these hives active? I hate to give milk up without testing first. Has anyone have hives that last for weeks, and traced it to alpha-gal?
You need to go a few weeks without consuming any mammal products period. Alpha gal causes extreme inflammation in your body so even something you have a mild sensitivity to can seem to be a full blown problem. Make sure your supplements are in a vegetable capsule too. Start slowly adding foods back into your diet after a 2 or 3 week hiatus from mammal products.
I have recently been diagnosed positive alpha gal…after suffering several late night attacks with severe itching on my hands and feet…vomiting..swollen tongue..lips and itchy throat…almost lost consciousness…luckily I have a nephew who had heard of alpha gal and I got tested…my question is I have lost so much hair and even though I have had no mammal in 2 months…my scalp itches a lot!!! has anyone else had hair loss with this??? My allergist said none of his patients have complained of hair loss…thanks for any comments
Have you tried changing to soap, shampoo, laundry detergent, and lotions that do no contain mammal or mammal by products? This made a significant change in my hair, nails and skin.
Has anyone looked into pork-cat allergy syndrome? Very interesting reading for all of us allergic to meat. Research on that is what led me to the alpha-gal allergy.
Well….for years I have had random and inconsistent allergic reactions. Two which were especially severe-particularly the last one. A full on reaction has caused the following: itching of hands, feet, swelling of lips, (ahem) genitals, monstrous hives on my arms, legs, back and scalp. My heart beats fast – often times a sudden headache is the first warning sign. I have also gotten hot (like temperature hot). Once in the dead of winter I woke up with this all at about 2 in the morning and literally nearly stripped naked and went out into the cold. Last time I was in the gym and got into a cold shower. It took 3 Benadryl to calm the rage last time. Went to an allergist and among 3 other conditions alpha gal was one of the tests he ordered. He ruled out a regular food allergy after we discussed the history and the late night reactions. I just got the numbers today. I can make the lifestyle change to chicken and fish…and I guess when I want some good beef or venison (hubby is a hunter) I’ll just have Benadryl on hand. I’m hoping to see some other minor ailments go away with trying the elimination diet. I.e. what has been thought to be eczema and a regularly annoying occurrence of the kind of hives that are under your skin on the bottom of my feet. My feet seem regularly itchy and sometimes I could just scratch them until they bleed and can feel the bumps under the skin. I live in the country and plucking ticks off of me is no rare occasion. I doubt highly I can avoid future tick exposure. Anyway I just wanted to connect with some others on this.
My advise is to steer far away from any mammal meat. For me, the redder the meat, the worse my reaction. Before I realized the connection between my meat eating and my hives, I thought it was the fat of the meat causing my reaction so I would eat very lean meat (fillet Mignon; venison; etc.) in small doses. One day at work, though, someone brought some elk in that had been sliced thin and pan fried. I had 2 of the smallest pieces at about 8:15AM. At 11:30AM I began to feel the tell tale itching that precedes the hives. I took 2 Benadryls/diphenhydramines at that time (I keep 3 with me at all times). 30 minutes later there were no results and my hives had started to cover my entire body. This is when I took my 3rd Benadryl/diphenhydramine. At this point I had to go in the conference room and lay on the floor. In the next 2 hours, my body was completely covered with hives, I had begun to swell and was having trouble breathing. Fortunately the breathing issue was at the end of the 2 hours and about the time that the 3 Benadryls/diphenhydramines in my system started to kick in – so no trip to the emergency room.
My condition has only gotten worse as I now have been forced to eliminate milk, butter, cheese and all forms of gelatin (as in capsules) which includes most vitamins and medicines. Even the breath mint Altoids uses gelatin (I’m guessing as a binder). I’ve even started eliminating glycerin and stearic acid (usually derived from fat) in foods unless they’ve been labeled as vegetable based (Vegan).
I finally have an appointment with an allergist and hope to at least get a definite answer as to what exactly I’m allergic to. If that’s possible.
Good luck to you.
Did you ever have any open sores on any of those swollen areas? I too have had kind of inflamed nether regions along with hives on hot areas of my body, such as wear clothes press all day. And then swollen lips and hives that turn into blisters, along with sometimes a sore in my mouth or nose. Have you had any reactions to dairy products, or just meat? During the summer I get tons of ticks on me as I work a lot in the woods. I’m thinking about getting permethrin (?) or whatever that anti-tick stuff is that one can wash clothing in, although I’m skeptical about using it since it’s supposed to cause cancer over long term use. But perhaps that is better then getting Lyme disease.
What was your #?
My 16yro son was just found out he has this took a very long 5 months to get the diagnosis. Can anyone tell me if you number are a certain level does that mean you can not have dairy either. We go back to allergist on the 30th but he is becoming very depressed over what he can no longer have.
In August of 2012 I purchased 18 acres of land across the street from my house. while I was clearing the fence lines I was bitten by at least 10 deer ticks. None of them was on me for more than a couple hours and I never developed the target or bulls eye like people who have contracted lime disease.
A little bit of my history is I am a medical massage therapist and I have been studying to be a herbalist for the last 10 years, so I had for the most part given up red meats sugars, dairy and most grains except for a little cheese and I think I have a fairly good diet and felt great afterwards.
The way I discovered I might have alpha-gal was Every now and then when we would go out and eat I would eat a chicken fried steak or similar. Every time I did I noticed a few hours later I would get stomach cramps and everything else that went along with them. This would last for about 5 days. I started asking around and finally figured out what was causing it. I have not been tested yet , but I’m sure it is Alpha-gal. Since the tick bites I have started having joint pain and cannot do a lot of things that I should be able to do with no problem. It seems to be getting worse.
The question I have about this is could the alpha-gal allergy be causing it like lime disease does and how many other people are having the same symptoms.
Hello guys. I really need help with something. I was diagnosed with this allergy this year and none of the doctors in my area in Virginia know what the heck they are talking about! The doctors keep prescribing me medications that I am allergic to. I went to the doctor on Monday for my asthma. She prescribed me Azithromicen and prednisone. I told her that I can not take prednisone because I get bad stomach pain, vomiting, swelling, and I breakout. I told them that both medications have animal products in them and that I probably shouldn’t take them. The doctor told me that sense the antibiotic didn’t bother me before than I should be ok to take it now. Well, this time I had to stop the antibiotic (last pill anyway) because of nausea and bad stomach pain. I am still sick and even worse than I was on Monday! Please help! I am desperate! The doctors in my area look at me and talk to me like I am crazy when ever I get really picky about my medications. I feel like a hypochondriac and I don’t know what to do!! The doctors even get irritated at me. I have to constantly check the ingredients of my medications before I take them because the doctors and even the pharmacists can not tell me if there are any animal products in my medications! I go to http://www.veganwolf.com that is where I get my ingredient list from.
I would find a compounding pharmacy. They can make your medications without the animal components.
Rebecca: My physician did not know about red meat allergy, but treated me nicely. You should go to an allergist who actually knows this allergy and can do a test. I found this, I hope is helpful: To schedule an appointment with an allergist who has experience working with alpha-gal patients please contact the UVA Allergy Clinic in Virginia directly by calling (434) 924-2227. You can also call the toll free patient referral line at 1-800-251-3627 and ask to make an appointment with one of our allergists.
Any other medication doctors prescribe won’t work at all, you should consider not taking them for this allergy.
I found that I could not tolerate gelcaps made from animal gelatin.
I am on my 104th anaphylaxis shock and rushed to the ER. I was told Feb 2010 that I had meat allergies. This is after I had over 60 ER visits and 7 different doctors none of which could tell me what was wrong. My children (I have 2 boys ages 20 and 16 and a girl 11)have seen me on the floor flopping like a fish out of water, gasping for breath. This disease has still put me into shock another 40 some times since I have not eaten any 4 legged animal. See now I have not eaten meat since Feb 2010 and I now can not smell it cooking. If I pass some ones house and the are cooking meat on the grill I can go into shock. If I go any where that the smell of meat is in the air and I breath it I go into shock. Where in the world can one go that this is not a possibility? I feel that I am in prison my home is truly the only place I feel totally save. If I could check the IGE levels in my blood like people check their sugar levels I would know if I could go outside of my home or not. To me that would be the perfect solution to my problem as far as being able to leave home. I can not go on a date with my husband and this scares me of loosing him one day and as far as my children I am missing so much of their lives. This just does not seem fair and yet its my life and I have to make the best of it. I have always felt that I would rather it be me than anyone else in our family because I am strong enough to handle it but to tell you the truth I feel like I am losing my mind most of the time. I know that unless you have this terrible disease you can not understand the life one must live that does have it. The medicine I take each time I have a episode is killing my body in other ways. My bones are weak from the prednisone and my teeth are starting to chip away. The medicine that I need each month cost a lot and my insurance is not that good on the cost of medicine. It just seems to me that until more research is done this is the way of life.
A couple of weeks ago I had a very bad case of the flu. Down for almost 2 weeks and nothing was helping. I finally remembered I had the ingredients to make Liposomal Vitamin C which has an absorption rate up to 98% or so depending on how well it is made. This stuff knocked out the flu in less than 2 days but I also found out it really lowers histamine production and release in the body. I have had my first cheeseburgers in almost a year with very little to no effect from them afterwards. Upon discovering this I then decided to test the limits and eat meat 5 days straight. I had none of the waking in the night asthma is going to kill me attacks just some difficulty breathing. Eczema eruptions weren’t nearly as bad either. I’m going to go to a twice a week meat eating plan with at least three days in between each serving and will post results later down the line.
Mike: Interesting you mention the Liposomal as my allergist has me on both Zyrtec and Zantac (the generic products). It has thusfar reduced my stomach problems which had continued even after cutting out red meat and all dairy. He said that this should allow some sample and trace consumption of dairy.
Eating a lower histamine diet really helps cut down on the allergy issues as does the consumption of the liposomal Vit C. I think the addition of so much garbage into the food supply along with the degradation of minerals and trace elements in the soil used for farming has developed a toxic buildup in many of us that has manifested itself in diiferent forms of allergies and reactions.
If you don’t mind answering, what were your stomach issues? My daughter is mostly having problems with her stomach and intestinal tract.
I found out 2 weeks ago I have this and there has been a dramatic change already. How rare is this. No one has ever heard of it.
I was recently diagnosed with this. How rare is it. No one I know has ever heard of it?
The CDC just recognized this in 2012.
I was diagnosed with Bell’s palsy two years ago. After a year of not healing, the neurologist said it’s considered long term. I had a recurrence last month after a cortisone shot in my hip. After that, I was diagnosed with Alpha-gal allergy. I had a dog that was paralyzed from a tick bite many years ago and wondering if that could be the reason for my Bell’s palsy. I’ve been tested for Lyme disease a couple of times since the doctors think it could cause Bell’a palsy. Has anyone else experienced a type of paralysis?
Becki, I was diagnosed with Bells Palsy in August of 2015. (I also had an allergic reaction to a flu shot in 2014.) Just got diagnosed with Alpha-gal in March. I had wondered if there was any connection.
I have had Alpha Gal for about ten years and just recently got diagnosed. I am trying to find a protein supplement that will not cause a reaction but provides the protiens that I am missing because of my restricted diet. Obviously meat is out of the question, but I was wondering if anyone had found anything that could work?
Lynda, I have been eating chicken, turkey and fish for the last few years. Nuts and legumes are loaded with protein too.
I’ve found that chicken/turkey and fish supply the protein needed and satisfies my protein cravings. If it comes from roots, feathers or fins it’s on my menu.
Hi Everyone. I am sharing my experience with the hope that it would be helpful to someone as I have learned a great deal from others in this site. I had a tick bite (the one and only in my lifetime so far) in 2012, as my husband and I were bagging dry leaves in our backyard. I saw the tick a couple of hours after the yard work and removed it right away. It swelled up like a knot and stayed that way for about 3 weeks. Since I didn’t have the symptoms of Lyme disease, I didn’t take it seriously. Two months later, the swelling of the face and lips started and I contributed that to the last thing I ate which made it even more confusing. My doctor sent me to an allergy specialist and after they exhausted all the tests, I mentioned about the tick bite and another round of blood work showed Alfa-gal. My doctor suggested taking Zyrtec which I only took it when I had the food made or handled by other people. Actually, a Wal-Mart pharmacist showed me a generic version of it for 88 Cents for pack of 14 pills and it has been great. A year later, I started having allergic reaction to milk, cheese, yogurt, protein bars and a lot of other products. I realized that whey protein is in a lot of products and causes a bad allergic reaction (also, any supplement or pain medication in gelatin capsules causes allergic reaction). At that point I started taking a Zyrtec a day for over a year. The second allergy specialist told me that the disease has affected my immune system and I need to focus on improving it. I started healthy eating, taking probiotics, working out and living a healthier lifestyle. It made a big difference. I don’t take allergy medication on daily basis and can consume milk and cheese. I am staying away from anything with whey protein, anything with gelatin and mammal meat, of course. I am hoping that by 2017 it would be out of my system. Good Luck everyone!
I was diagnosed with this wonderful (insert sarcasm) allergy on November 11, 2014 at the age of 27 and I have went from a whopping 132 pounds to 112 lbs and still counting. Does anyone else feel like your starving yourself or is it just me.
I also found out I am allergic to dairy products. My other question is……
What vitamins/supplements are safe for me to take with thus allergy?
Cassandra, I thought I am allergic to dairy products, but as my allergist said, I am allergic to the animal enzymes used in cheese. If I eat cheese with vegetable enzymes, I have no problem at all. I know everyone has different reaction to this, but you might want to give a try.
I also developed sensitivity to scrambled eggs only and none of my allergy pills works with that. I can eat eggs if baked or broiled, but not scrambled. Another item on my list to avoid. I am wondering if anybody has that allergic reaction since the tick bite?
I was DX with this meat allergy earlier this year. I believe I have always had this issue but made it worse after a camping trip in which I thought I had been eaten up by chiggers. I think this re exposed me now has made it impossible for me to eat meat. The last episode in which I thought I would “try” a hamburger ended with me not feeling very good. I learn things the hard way. I am hoping I “grow” out of this allergy as I am a meat and potato kind of girl. I am getting ready to travel and feel I need to have some sort of medical alert necklace. I would hate to be in an accident that kills me all because my feeding tube had a cow go through it. My question us…What exactly should I have the jewelry say-Meat Allergy?-Severe Allergy-Beef-Pork.
I think this may have something to do with the Sialic Acid/Sugar, Neu5Gc. If you read about it, you will understand why I suspect it…. Not just AG…Is anyone being prescribed any acid, enzyme or probiotic therapy? Just wondering if it has helped… I also think certain peoples genetic makeup predisposes them to AG and Ne5Gc
issues. Lack of certain acids in the stomach to break down the meat and certain autoimmune and inflammatory conditions that cause these symptoms to be worse. They have also seen that it may be possible for ticks to transfer, Neu5Gc through their saliva. It is a foreign acid/sugar to humans and many develop antibodies to it and inflammation. It occurs naturally in all meats and could explain why some people become increasingly sensitive to many meats and dairy. It is at the highest levels in beef, pork and lamb. I think with constant inflammation it creates a windfall effect in some people creating increasing sensitivities through the breakdown of our gut lining and build up in tissues. Just my thoughts….read about Neu5Gc. Interesting to say the least.
Hello Kelly Plass
Thank You for mentioning Neu5Gc.
I have had problems with egss and fish eggs and this cannot be explained by alphagal as it is not there but Neu5Gc is in raw amounts.
I have tried shrimps and had much less problems with stommach than with cod that as is my main protein source.
This is also better explained by Neu5Gc.
By the way I have had Prostata cancer with removal,rays treatment and it is low and stable for the time being.Wife and I have eaten a lot of mamal meat and wife died of breast cancer a year ago again supporting the Neu5GC theory.
18 months ago test was over 100
9 month ago test was 48 and today
it is 28.
I can hardly wait to buy buttermilk and Emmenthaler chees
I got hives for the first time in my life when I was about 6 months pregnant in 2003, and I often had tick bites. After closely examining what I ate, I determined it was ground beef. Interestingly, I could eat lamb, so we started raising sheep, although I got hives one time from it. I could also eat venison. I figured it was the hormones or whatever is given to cows. I enjoyed organic beef from one source, but 2 other sources of organic beef gave me hives. Then I thought maybe it was a certain protein in different species of cattle.
Finally a friend forwarded the Alpha-Gal info to me abut a year ago and I realized that’s what I have! It was always 4 hours later, and a Benadryl or two took it away. Oddly though, the reaction could worsen and then another time a year later, it’d be less. (not always worse and worse) I started eating small amounts occasionally with no reaction, and now I can actually eat a fast food burger! I’ve only had 2-3 in the past 8 months, and am hesitant to do so. I’ve never been tested, because I didn’t have health insurance for over 10 yrs (now I have Obamacare), but the allergy was very real.
Once, in 2009, after a 11-day cleanse, I wanted to see if I was free of it, so I had just a few meatballs from IKEA. Late at night, I could barely breathe; it was like through a straw. Hives on my eyes and ears… and only Benadryl to help. Eventually it subsided.
Now I wonder if I still would show the antibodies or if I’m cured, miraculously. Any thoughts?
Get tested for alpha galactose and see if you are below .35 on the test.
I’ve been reading through many of the comments and would like to know if anyone has had sores/blisters from reactions? I was diagnosed about a year ago with the alpha-gal allergy, and my number was only 0.79, although my allergist said it might not reflect my reactivity/reaction.
I get lip swelling with hives that become blisters, and have on occasion gotten open sores in my mouth and nose that accompany the reactions and irritation of sensitive skin elsewhere. I also have been getting raised welt like reactions where my belt line is or socks hit the top of my feet, like a heat rash that has little hives in it with a lot of inflammation. I’ve been staying away from meat and after a reaction to a cookie with whey protein powder I’ve been avoiding that. Now I’m having more reactions and wondering if it could be dairy in general? I went for some further testing and was told that although the blood tests to meats and dairy came back negative, they didn’t show the Alpha-gal allergy so it can be there and not come back as an allergy to the test… I assume because it’s the specific carb that is causing the reaction, not the whole? I did see that people have had heat rash type issues. My question is have any of you had sores on mucosa type skin along with other symptoms? And does butter have a lot of whey in it, and/or yogurt? I’m going to try an elimination diet, but I do so love my cheese and yogurt. Any insights/advice/sharing would be greatly appreciated!
Naomi, Hi. If it’s of any encouragement I have had similar variations of the sores and blisters you described. I know. It’s horrible. The grand kids go running and you wonder why people look at you strangely. Stressing out only seems to worsen the problem. READ every label that accompanies any food you plan on eating and if you usually don’t pray….you may wish to rethink that option. lol It also helps with stress.
What do I do if I alredy have Alpha-Gal, but then bite by the Lone Star tick again? does that make me even more sensitive to Mammal meat and mammal products?
According to our allergist, if you have the allergy and don’t get bitten again, there is a good chance it will go away in time. If you get bitten again, it will take longer for it to go away as you have to start the clock over.
actually no because I got bit by the same tick and all spit in the ticks mouth can carry alpha gal but sometimes you`ll just have a reaction to the tick bite
Well, it’s official. I have been tested positive for Alpha-Gal (Galactose – Alpha – 1,3 – Galactose). When the average person is tested, the score is <0.35 (do not know the unit of measurement). My score was 1.88. As expected, the only remedy for this allergy is to avoid ALL products that come from mammals (all animals that grow hair). Not only do I avoid all mammal meat (beef, pork, venison, rabbit, squirrel, goat, lamb, etc.) but I avoid ALL products containing mammal ingredients (soap, shampoo, conditioner, toothpaste, laundry detergent and softener). My allergist prescribed the generic version of Zyrtec (Cetirizine) which I take once a day. Once in a while my hives aren't affected as fast as necessary and I'll follow the Cetirizine with the generic version of Clairitin (Loratidine) about 2 hours later which seems to do the trick.
Find the Twinlabs Vit C with quercetin. It does a good job of keeping histamine in check. Product is citrus and corn free. I took 3 the other night and it totally killed a bad reaction that was starting. I hoe everyone here has tried the low histamine diet to see if that is your issue.This cruel condition encompasses all foods and beverages not just meat.
I am so glad I found this site. I have been suffering with Alph-Gal for 3 years today. Its so hard trying to plan your meal when you have a 19 year old at home and a husband that can eat anything, but I have to say my husband has been so considerate of not eating in front of me like steaks, ice cream.. He knows they are my favorite. I kept going to the dr for flu like symptoms and a rash on my stomach. Finally I found a specialist that diagnosed me and put me on medication. after about 2 weeks on the med I went back to him because I was still sick, he said lets make a list of foods that you have eaten, I had already given pork and beef, but I failed to give up dairy. So as soon as I gave that up I started feeling better. I have to read each label and make sure there are no flavorings of pork and beef in there. A friend of mine told me about a shot you can take to help get rid of this. Has anyone heard of this?? I called my dr today and told him this he said he has not heard of this, just checking.
There is no shot that will get rid of allergy. There are treatments that might include shots that help control symptoms.
On the first week of March, 2015, the hives began breaking out. The following week I began running a fever each day of 101-103, and the most severe chills I ever experienced came with the fever. The fever stopped after one week, but the hives continued. It was time for my annual CT of abd./ pelvis/ and chest (I am a colorectal cancer survivor). The CT showed lesions on my spleen and my bloodwork showed elevated liver enyzmes. My PCP said a viral infection was going on, which probably caused the hives also, even though the hives came first of all symptoms. I had no intestinal distress, just hives/ temporary fever/ fatigue/ loss of appetite. I was sent to infectious disease dr. and he repeated the CT and bloodwork after a few weeks had passed. My CT was normal, with no lesions on spleen, and my liver panel was normal. I was then sent to my dermatologist due to ongoing hives, and she suggested the Alpha-Gal blood test. It tested positive at 4.4. I’m going to an allergist next week, meanwhile off of all red meats and have epipen on hand if needed. I have not eaten red meat for 4 days, and already the hives are leaving. My question is this, could this allergy have caused the spleen lesions/ elevated liver panels/ and high fever, all of which cleared up before I went off of red meat last week? Or was I in a viral infection along with the alpha gal allergy? Tick bites are common here in Blue Ridge Mountains of Va., and I’ve had my share, along with many chigger bites, and I had Lyme’s a few years ago.
This is the test. Doctor must draw blood and oreder this test: http://www.viracoribt.com/Test-Catalog/Detail/Galactose-alpha-13-galactose-Alpha-Gal-IgE-30039
I was diagnosed with this by a very, very smart allergist about 6 months ago. I didn’t, however, get the test in which you get a number to relate to how bad it is. I simply got a (cheap) test in which they confirmed that I am allergic to “mixed red meat.” Can someone please tell me where I could get this actual test?
I have stopped drinking milk because I’m pretty sure I had a mild allergic reaction to it a while back and I just want to see if I have a “high” number or whatever. It could have just been something small and stupid, but I do NOT want to have another allergic reaction like I used to get. Any help to find this actual test I could take would be appreciated.
It’s been a year since those dreadful tick bites and I have learned alot through research and trial and error. I found that after contracting the AG allergy, I also developed chronic hives to many things. The drop in body heat after exercising gave me horrendous hives, as well as chronic urticaria when exposed to cold weather. I haven’t had red (hoofed)meat in well over a year, but do find if I eat some dairy that the itching begins. I learned this winter to just bundle up (hot natured, so not fun – but better than hives). After exercising I layer on the clothes to keep warm, and now that the temps are higher, it’s getting better. I’ve now exercised 2 straight days and only one hive……believe me, it used to be thousands. I hope I’m figuring some of this out – so bizarre. Good luck all and keep the info coming!
That’s kinda funny. I used to attribute my hives to a drop in body temperature as well. I could sit down on a cold floor and it would trigger the reaction. The hives would start on my butt if that is what was touching the floor. I had thought it was just a coincidence, but maybe it wasn’t. I haven’t had a reaction in almost 2 years after stopping the red meat though.
I have had these Severe stomach pains and middle of the night trips to the ER on and off again since 1992. About 4 years ago it was diagnosed as an Advil allergy. Then after 2 very scarey trips to the ER when no medicine was taken,I had sever stomach pain, hives, itchy hands and feet, burning ears, followed by lip and toung swelling and felt like my body was shutting down..I really pushed my doctor for food testing.
In February they finally tested me for alpha gal and it was a low positive, like a 3. I was sad because I enjoy meet but so happy to finally have an answer. It’s been two months and I have had no reactions except to some jello I had, I took 3 benedryl and it did not progress past stomach pains and bad bathroom experience.
My allergist recommended I go to a research hospital in my area so I could get more information. I am so discouraged today after finally having my appointment. I thought I would learn more today and she basically did not believe me and asked if I had pictures of my hives or swollen tounge. She wants all my medical records to verify my accounts. She was asking me details from my first trip to the hospital in 1992. She told me to stay off meat so when it happens again it will basically verify her skeptism of this allergy. Has anyone come across this? I want to find out either way so I can avoid this happening again. So many times I felt like I was going to die. For years I just thought this is what IBS is…
She was a total skeptic of the validity of the research and said she “wondered what she would do if she ever had a patient with this”. Part if me wants to let her review all my records to make sure I am not missing something and the other parts wants to never go back to her. Who thinks to take pictures when they are in that much pain?
I never imagined this reaction.. How can I feel confident to ever get an ER doctor to believe me? Any insight would be appreciated.
I was bitten by a lone star tick over the weekend. It was not engorged yet, but I don’t know how long it had been there. It was very difficult to remove. One question I’ve not been able to answer in my research is how long after the bite do the allergy reactions usually show up?
I don’t eat a lot of red meat, but thinking it might be nice to have the test done before any type of reaction occurs. TIA!
I think my cat now has alpha-gal. I developed alpha-gal from a tick bite – we have many Lone Star ticks in the woods here. And now she gets all inflamed (mouth & digestive system) & itches severely to the point of ripping fur out of her legs if she gets any red meats (beef, pork, rabbit, etc.) or if she kills a mouse & eats it.
I live in Sydney, Australia and was diagnosed with Alpha-Gal last year. I have found it challenging not eating meat as I have been a red meat eater my whole life. As a Mother’s Day present, my husband bought me some Ostrich meat from a Butcher in Sydney, based in St Ives. The BEST Mother’s day present ever!! After marinading for a few hours and cooking on the BBQ (medium rare), it tastes just like red med! So don’t despair-go and buy some Ostrich meat everyone out there missing red meat:)
I live in North Carolina and was diagnosed with Alpha-Gal allergy in 2012. I find it is all still a learning process, but I did discover the Ostrich burgers at the North Carolina State Fair and they are fabulous!! I find I don’t miss read meat much, but it is nice to try something different that won’t make me react!!
How can I find doctors in my area who are aware of alpha gal and will test for this allergy? Anyone know of doctors in Orlando FL or in the state of Florida for that matter? How did most people get diagnosed here? I searched but there’s no specific database of doctors out there. I know you can get the test done with a signature from a doctor but really need to find a doctor who knows about this odd allergy.
Also, a suggestion to help you prepare for the future of your support section: as your support page grows and grows, you may need to look down the road and change the format while it is still manageable, to something more like a bulletin/discussion board with sub forums or topics. This would prep you for the future growth explosion this topic will likely evoke.
Hi guys, I’ve had the allergy for about 2 yrs now (initial test positive 9.55 IgE which is way high compared to the threshold of 0.35). Had an accidental ingestion last week (I think what I ate had been accidentally fried in pork lard?) and have been in the hospital past two days for anaphylaxis-related symptoms that come back every time I eat, no matter what I eat. The reaction started 6 days ago and still returns, symptoms just as strong, even while taking high doses of steirods and antihistamines and being very careful of what I eat. Do any of you have prolonged reactions like this? Throat/tongue swelling, hives, and abdominal cramps, all that seem to return once meds wear off or when you eat? If so, what did you do about it? The Dr’s here at the hospital are kind of stumped…
I live in North Carolina and was diagnosed with Alpha-Gal in 2012. I find it’s all still a learning process, but I did discover Ostrich Burgers at the North Carolina State Fair and they are fabulous!! Mostly I don’t even miss red meat, but sometimes it’s nice to try something different that does not give me a reaction.
I have had this affliction for my entire life, as far back as I can remember. I am now 54. As a young child my well-meaning mother fed me piles and piles of cheeseburgers, baloney sandwiches, ham sandwiches, chef-boyardee spagetti and meatballs from a can, etc etc. (this diet undoubtedly contributed to my heart disease). The only alpha-gal symptoms I suffered as a young child were stomach cramps and diarrhea. At that time, I thought this was normal. By the time I was in my 20’s the symptoms were fully developed: hives, swelling, itching, trouble breathing, racing heartbeat, etc. It didn’t take me long to connect the reaction to red meat and dairy products. I’ve been mostly successful avoiding red meat and dairy for nearly 30 years now. I never knew the root cause of the allergy until my wife read something about the tick connection and then I found this and other websites. Over the past 30 years I have eaten a lot of chicken, turkey and fish and I am probably better off today because of it. As a footnote, tick bites are common for me. I have always spent a lot of time outdoors, in the woods, etc. Still do. Anyway, it is good to find this website, and to FINALLY know the root cause of the meat allergy.
I have had this affliction for my entire life; as far back as I can remember. I am 54 yrs old now. Growing up, my well-meaning mother fed me piles and piles of cheeseburgers, baloney sandwiches, ham sandwiches, chef boyardee spaghetti and meatballs from a can, sausage and bacon, etc. (this all certainly contributed to my heart disease). At that time, the only symptoms were stomach cramps and diarrhea. I thought that was normal. By the time I was in my 20’s the full blown symptoms set in. Very painful itching and swelling, difficulty breathing, racing heartbeat, etc. It did not take many episodes before I was able to link the reaction to red meat and/or dairy products. I have now been red meat free and dairy free for nearly 30 years (except for an occasional accidental ingestion). My wife recently read something about the tick connection and that prompted me to do some searching and I was really glad to find this and other websites. So now I know what causes this terrible affliction! Tick bites are a way of life for me. I’m an outdoor guy. That’s not gonna change. However I have NOT found it difficult to avoid red meat and dairy products. I really don’t miss it. I eat a lot of fish, chicken, and turkey. I am not sure at what young age or in what state I initially encountered a lone star tick… could have been TN, KY, FL or even MA. Since then I have lived all across the US South, from the Carolinas to western Louisiana. FWIW, I have similar reaction to sunflower seeds, except it sets in much quicker versus the 3 – 6 hour Alpha Gal delay.
I was diagnosed with alpha gal about 2 years ago. Unfortunately it heightened all my other allergies too. I can’t eat shellfish, tree fruit, tree nuts, or soy. So, I feel like a bubble boy. To make matters worse, I can’t drink my blues away because I am allergic to alcohol too! I’ve dropped nearly 60 lbs, which puts me well below a healthy weight. I feel so frustrated.
I am trying to put together the puzzle pieces of this alpha gal. I know i have it and have never felt better since being diagnosed i miss red meats ): but i dont miss the middle of the night drama and shock!
Thing is what i wonder is alpha gal which we have coursing through our bodies is not a cancer preventative since alpha gal is in cancer medications and we can not take them.
I also say this because i had some abnormal cells and since acquiring alpha gal they have since spontaneously regressed,
with no medical intervention.
Just a thought!
Does this make sense?
My daughter Hailey is 13, and we have been going thru so much with her and her allergist but I already knew it might be a meat allergy because of the timing of when she got sick and started having the hives, they finally ran the blood test and said her alpha gal was high. But I’m just wondering what happens now?? Some days are way worse than others but is it gonna be completely gone as long as we avoid all meat?? Will her stomach problems get better?? Thanks for any advice..
From personal expirience I will say the important thing is not to get bitten again.
My alpha number goes down to half every 8 month and I feel miles better as at start of ilness.Center of a big town is probably safer than pastoral landscapes
Sorry for the redundant post. I did not think the first one posted successfully, but in fact it did post. Admin, if you want you can delete the first of my two very similar posts.
Wow.. I am not alone! I was just diagnosed 7 months ago. I was bit by a lone star tick back last april. I had the tick, and it even left a mark, as well as a large pit in my shin where the bite was. It was a painful few months as the muscle deteriorated, just like a spider bite. I would have sworn it was except for I had removed the tick from that spot. I didn’t get the allergy right away, it took about 3 months for symptoms to show up, nausea, stomach cramps and the runs. Then about 4 months ago, I ate some chili, and I went into Anaphilaxis. I had my blood work come back well over 100+. This is even worse than my Alcohol allergy! Yes, I am Double blessed..Next they will tell me I am allergic to water..Grrrr….LOL
Yes I talked to my allergist about an allergy bracelet. He said to put Allergic to all mammal meats and byproducts, anaphylaxis reaction use epi pen. Also to list any other allergies personal to you. I feel this is extremely important. What if we were unconscious from a car wreck and brought to hospital, family not present? It could affect the medications in gel caps later prescribed plus the diet the hospital would order for you when you could eat. Hospitals and nursing homes do not all follow diets strictly, as an slp I would recommend ordering a strictly vegetarian diet to be completely safe and if you’re in the south make sure they don’t cook veggies in bacon. As a side note, I have just started using a hickory seasoning used in bacon as a bacon substitute for flavoring in my turkey and chicken burgers. Hope this helps. Has anyone heard that essential oils like lavender are harmful to someone with alpha gal because it affects mast cells supposedly? I’m cautious and skeptical to try without research proven safe results.
I never heard that but I always ask not to have it at a salon because it gives me a very bad headache. I also break out if I touch lavender or rosemary from the garden. Interesting!
Interesting article directed toward pharmacists helping their patients with alpha gal allergy. I am recently diagnosed and had cut out all vitamins during my discovery period. I need reccomendations of a good vitamin d and fish oil to take without gelatin. I recently declined a tetanus shot as I just did not want to be sick with anything else at the time. I think it’s important to be educated so if you are ever in an emergency situation you aren’t given a medicine with alpha gal in it. Has anyone reacted to tetanus shot? Of another medicine?
I too have a problem taking medications, it is a terror to try and find a medication without alpha-gal in it or animal byproducts. When I talk to my doctor or pharmacy to see if there are animal byproducts in them, they look at me like I am crazy! They also say that the stuff is synthetic and made in a lab, but my body says different. I hope this helps you some. I get my vitamins on vegan sites. I use Deva Vegan Multivitamins.
To C. Jackson regarding vitamins: I have found that “Rainbow Light” offers some vegan formula vitamins including a multi-vitamin as well as a calcium/vitamin D supplement. You would need to go on line to research a particular item since all their products are not animal-free. I have also found that brand at Whole Foods. Even if you are not “vegan” that just insures there are no meat by-products used in them. I’m not sure about the fish-oil supplement. Hope this helps.
Another comment for C. Jackson: For fish oil you might need to use a liquid to avoid the gelatin issue. I know that Nordic Naturals is a good brand for veterinary use, so it is probably a good choice for humans too.
Does anyone know of any antibiotics that I can take? I try the tablets but I have sever allergic reactions to them too because of the lactose and magneseum stearate. Do any of you know of a vegan pharmaceutical company that makes antibiotics in the US?
Ironically I have never had an allergic reaction to milk or dairy, and my allergist says that is not part of the Alpha-Gal allergy (though it is possible have an additional allergy to dairy that is a separate thing). I have always been a little “lactose intolerant” long before the Alpha-Gal thing, so for that reason I use Lactaid milk and eat cheeses that are low in “lactose.” I do OK with that.
Here are a few sites that can help you avoid animal ingredients. Some of these are from bugs, poultry, or fish, so they may be suitable for some.
http://michaelbluejay.com/veg/ingredients.html https://www.health.qld.gov.au/qhpolicy/docs/gdl/qh-gdl-954.pdf http://www.prevention.com/health/healthy-living/medications-contain-animal-products http://www.veganwolf.com/animal_ingredients.htm http://www.choosecrueltyfree.org.au/animal-ingredients/
Finally after 4 years of dealing with this issue and asking specialist about it I got my answer. I asked for years if this could be a possibility and I was looked at like I was crazy. I gave myself elimination diets for 4 years and occasionally would go through bad phases. Wondering why I was getting “worse” recently I went to a different doctor and had the alpha-galactose-1,3-glactose IgE blood test completed. I also had a few other allergy panels completed. Beef, pork and milk showed up as allergies for me. The alpha-galactose-1,3-glactose IgE blood test came back positive. Sure enough this little tick caused some damage. If you anyone thinks they may have this issue definitely ask for a blood draw allergy panel for meat, dairy and alpha-galactose-1,3-glactose IgE blood test. This allergy may not show up on a regular skin prick test. For myself, my reaction is mostly GI (only on one occasion have I had a light anaphylaxis episode). Thank goodness for alternative dairy products and other types of meat (poultry & seafood). I have changed to using Cashew/almond milk, coconut yogurt, oil based butters/spreads.
I specialize in nutrition/food for healing and if any of you need help I hope I can be of assistance to you all. I may be able to offer suggestions if you need it.
Episodes like this unite people and with our knowledge we can help others for the better.
WOW! Guys, I will never eat white sugar again! Apparently it is very very unhealthy and it contains alpha gal…but Molasses seems to be full of vitamins and minerals if it is unsulfered and does not seem to contain alpha gal…will do more research!
Organic sugar should be safe.
Ok, so I was wrong…according to the first article molasses does contain traces of alpha gal because of the bone char processing.
Hi, I have a friend who has the alpha gal allergy, and she has tested low for CD8 and CD57, which I take it are immune system markers of some kind. Her doctor thinks she may has lyme, as testing low for those is said to indicate lyme or HIV, and she does not have HIV. What I’m wondering is, has anyone with the alpha gal allergy been tested for CD8 and CD57? I’m wondering whether just the alpha gal allergy could cause her scores to be low.
My allergist has me waiting for approval for a shot/drug called xolair. It is not intended to help with the alpha gal but hopefully will nullify the other multiple allergic reactions I’m having to multiple major foods. I have been on a regime of Zyrtec, Zantac, Allegra, Hydroxyzine, benadryl and Singular for over a year and a half. And yes, I am taking all of them…day after day, each and every day. I’m so thankful I’m retired. I can’t think too well with all these drugs. If anyone out there has any thoughts on the xolair…please post. Thanks. I’ll let you know if it helps with the alpha gal.
My Doctor wanted me to take all that stuff too…but I don’t… I take Zantac, Zyrtec and Benedryl if Im having a mini episode and use the epipen if Im having a full on attack. I have reactions to lanolin in lotions etc too…. just itchy and a few hives. Im about to limit myself to vegan products now becuase Im tired of having to go to the hospital from an attack when I can’t figure out what I ate wrong. Meat by- products are in A LOT of stuff and its so easy to get a hold of something meaty when you didn’t know it was in what you were eating. So wish me luck….
Karin, because of this allergy in order to survive I had to abandon all package foods. I had to read all labels when I buy cheese. All products made with beef or pork (mammal) makes me severely sick. It is now 5 years since I started with this problem and still have it and I know why now. Where I live is full of chiggers starting in May all the way to the end of Sept. I am a avid gardener and spend most of my days outside because I have 3 acres to mow. I really feel for you…I have found a natural anti-histimine that is really helpful called Lucidia. You may give it a try. Also Vitamin C is very good indeed. My best to you….
I suspect having this allergy, and live abroad. Is there any test kit I could use to confirm?
Is there any blood test one could perform in a typical lab?
Get an allergist to order this test…..
I really wish someone would find a solution, fix, medication, or anything that would help with the constant nausea, upset stomach and pain. I don’t know how to deal will feeling sick all the time. I miss a lot of work because of this alpha-gal allergy.
I am sorry for being so negative, thanks for letting me vent.
I have a question. Hubs has been diagnosed with Alpha-gal for two years now and we’ve been really good about our diets.
I was bitten by a lone star tick this summer and so put myself on a restricted diet avoiding all mammal meats, as I’ve seen the really ugly side of this allergy and had no desire to go through that.
I want to get tested, but his allergist told us that until I had a reaction, that there was no way to tell if I had it or not.
Is that true? Logically speaking by the very nature of the disease, if the tick that bit me was a carrier, wouldn’t I already have the elevated antibody count?
I really have no desire to make myself a guinea pig by eating meat and then waiting for a reaction, especially when we really have no idea how severe it will be.
So does anyone know if I can go ahead and get the test and see where my baseline is?
Our allergists recommend waiting 14 days after the tick bite to get tested if you want to know if you have the allergy or not.
I was bitten by a lone star tick early in July in NJ. As soon as I saw it and looked it up, I cut red meat out of my diet until I went to my allergist almost a month later. He had me tested and my number came back 8.2. He got in contact with Dr. Platts-Mills who said that even though I have a positive result, I might not have a reaction. My allergist recommended that I try small amounts of meat to see if I am allergic. Since I have allergies to nuts and shellfish, as well as raw fruit, my options are already limited. I’m afraid of finding out if I’m allergic especially since it’s a delayed reaction. I was wondering what other peoples’ numbers were, how much meat causes a reaction, and if anyone has any recommendations for how I should work my way up to testing my allergy. Thanks!
I have never heard of a doctor advising you to eat mammal meats after testing positive for alpha-gal allergy. Perhaps you should get a second opinion. Allergists usually say to avoid all mammal meats and their by-products if you test positive for this allergy, as it is a very dangerous allergy.
I was diagnosed with a mammal meat allergy about 15 months ago. I knew I had an allergy to shrimp but when a hamburger caused a two hour delayed reaction I went to see an allergist. The doctor had read about the alpha-gal issues and had me tested – 74 (very high). I have avoided all red meat since the diagnosis. I still get minor itching periodically – possibly from milk in my coffee or cheese. Sometimes the symptoms go away on their own, other times I take benadryl for relief. Is it possible to take too much benadryl – either for potential damage to other organ systems or maybe lose effectiveness? Thanks
Has anyone experienced Benign Positional Vertigo since they have tested positive for Alphagal?
I have had thistle years, I believe, but I only tested positive for alpha gal a month ago…interesting.
thistle? “This for”
I ended up in the ER with once before I found out what was wrong. What they gave me in the IV was more than the 8 plus Benadryl that I would take when I had an attack. I did ask my Dr. and he confirmed.
Does any know of a pharmacy list of medications to not take. Does anyone know of a good allergist or a doctor that understands this allergy in Missouri.
A lot of medicines and injections have mammal in them. It depends upon your sensitivity as to whether it will bother you. Most pills have lactose and magnesium stearate in them. The Mg stearate and glycerin can come from a plant or from a mammal source. You have to contact the manufacturer to find which it is. Obviously gelatin capsules have mammal. If the medicine inside doesn’t have mammal products, then you can move the medicine to a vegan capsule to make it safe. Name brand Benedryl has mammal in it, including the liquid. Unisom Quickmelts have same generic ingredient as Benedryland are easy to carry around and have no mammal. I use a children’s liquid version of allergy and pain medications to avoid the mammal in pills. You can also have a compounding pharmacy make safe versions of drugs. As inert ingredients in medicines can vary by manufacturer you have to check with the manufacturer to be sure if their version is safe. Once you find a safe brand ask your doctor to specify only that brand on your prescription or pharmacy will use whatever brand they have on hand and that changes frequently.
Robert Wood Johnson University Hospital Drug Information Service at Rutgers University is creating an alpha-gal safe drug list so call them at 732-937-8842 to help with drug questions.
after a couple years of my doctor advising to just stay away from red meat I called dr plats mill one day thinking I may talk to a nurse or a student researcher . however, the lady who answered put him on the phone. he talked and asked a ton of questions about my life style and advised that he thought part of my problem may be caused by alcohol and eating red meat at the same time . I only had a couple occasions a year and I don’t drink very often and it seemed to make sense when I only had outbreaks late at night and that would be the only time I may have had a beer while grilling a steak or something. I have been eating meat again for over a year now and have had alcohol on a couple occasions but not together and have had no problems. I know each case is different but thought I would share my success story and maybe help someone else.
I tested positive about 2 years ago. I was wondering if anyone has had any experience with whey protein powder. I want to add a post workout protein shake to my routine, but I’m worried about the dairy content. I have reactions from heavy creams, but not milk or cheese. I know there are vegan options, but the whey protein is supposed to taste better.
I am Alpha-Gal positive. ANY Whey of ANY kind or ammount causes anaphalatic shock for me.
Molasses (bones), Gelitain, Glycerine, Lanolin,… ANY Mammal Product or contact. A leather belt against my skin, a dog that has eaten meat and then licks me, ANY Mammal Product.
Remeber that fire burns, and burns last forever.
I was recently diagnosed with alpha gal after becoming extremely ill and spending 4 days in the hospital. I have eliminated everything that I know that I should from my diet but I continue to have a reaction daily that I was wondering if anyone else experienced. I have places that start itching every day. These places start on my ankles or lower legs and often spread to my arms and head primarily. These places are bumps that come up under the skin. They are not visible but are very easy to feel. I also feel light headed the majority of the time. While my ag test came back with a reading of over 15, I am concerned that ag is not the only issue I am dealing with. Does anyone else have these extremely itchy bumps under their skin???
I just read itchy pumps were a sign of celiacs disease. good luck finding out more.
Yes, I have itchy bumps, mostly on my upper back and sometimes lower back. You have to rub your hand over to feel them at times. I have switched all my hair products, soap, laundry detergent to vegan products and it has helped.
I recently posted a message about very itchy bumps that started coming up under my skin after being diagnosed with alpha gal. Finally figured out source of problem and its not related to the alpha gal. My doctor had put me on a new stomach med that I didn’t have a reaction to until I had taken it for several days. I quit taking the med and 4 days later, the problem went away.
John T (Tim) Williamson
My alpha gal first showed up as hives but the E R bloodwork came back as a non allergenic cause. The 2 shots of Benadryl they gave did not help. Primary care dr put me on steroids & did an egd. EGD showed yeast in stomach. Took FLucanazole for several months & Dexilant for stomach. 2nd EGD showed yeast gone but stomach severely rashy. Then went to allergist & came back positive for alpha gal. Have been bounced around for a year from gastroenterologist to rheumatologist (as joints kept swelling). Guess alpha gal was culprit the whole time. Im taking all red meat, meat by products (milk, cheese, etc) gelatin out of my diet. I would like to ask if anyone has had problems that’s taking premarin, as this is made from pregnant horse urine? I sure don’t want to stop that.
I just received results today from a test last week. I am diagnosed positive at 53.7.
I’m glad to know for sure. It’s also nice to have a firm diagnosis when folks give me ‘that crazy look’ when I have to tell them I am allergic to beef
Y’all know what I mean
I have had 4 or 5 reactions over the past 3 years and finally connected it with eating beef and lamb. My wife is vegetarian – we mostly eat meat-free at home – but I often eat meat if we eat out.
I have had memorable reactions following:
• a fine lamb dish (medieum rare) at an upscale restaurant.
• a lunchtime burger at 6 Flags.
• a mid-week burger at lunchtime from MacDonalds.
But, I find it interesting that during the same timeframe I have also eaten a number of lamb, beef and pork dishes without any noticeable reaction. That fact made it so difficult to pinpoint what was causing this problem.
So… since I do not have a reaction every time, I am wondering what the combination of factors is that causes the reactions.
Is it the quality of the meat?
Is it the way it is cooked?
Could it be if I’m run-down/tired/stressed at the time of eating?
It’s definitely not alcohol at the time of eating, but possibly the night before?
Something other ingredient in the dish?
Thanks for sharing any info you may have and for any pointers.