My weird allergy is called alpha-gal. I’ve talked about it on here before but the other day when I mentioned it, many asked what it was so, here’s more than you want to know. You can google it and find out all kinds of information if you’re so inclined. But, it doesn’t hurt to know about it because too many doctors have never heard of it.
It’s believed to be caused by a tick bite but there may be other causes. The weird thing about it is that unlike most, if not all, food allergies, the reaction is delayed. They say any reaction will come at least 3 – 4 hours after the trigger food has been eaten but the reactions can occur 8 – 10 hours after eating the food. Mine almost always happen about 6-8 hours after I’ve eaten something that causes the reaction. For this reason, it is very hard to diagnose because no doctors are suspecting something you ate 8 hour ago to be just now causing a reaction.
The first time I had a reaction, was about 12 years ago. Chad was in high school. He and I were staying in town and had been to a burger place in the middle of the afternoon. I had been working outside and that night, I had to go to the ER because of extreme itching, hives and difficulty breathing. They had no idea what caused it and suspected that I had gotten into something while working outside. I had no reason to believe otherwise. About two years later, it happened again. I don’t remember what we had eaten but the ER doctor figured I had gotten into something that caused the reaction.
We moved to MO and they have an excellent hamburger joint – good, greasy burgers and we ate there at least once every few months. In four years, I went to the ER three times there. No one ever even asked about food possibly causing it because most of the time, we would go eat about 4 in the afternoon and it would be about midnight when I’d end up at the ER.
Once, I was in Louisiana. My parents and I had gone to our favorite burger place there for lunch. That evening, I met my friend, Eileen, and we went to eat at a different restaurant. We sat and talked and ate and went back to her house. No sooner had we gotten to her house and I felt the extreme itching coming on. I knew I was fixing to have a reaction. She doesn’t live far from a hospital so I ran down there. I was sure it had to be something I had eaten while out with her, but now I know it was the burger I had for lunch.
I talked to my doctor back in MO and he was sure it was a combination of something I was touching, and breathing and it had to be something “environmental” and very common since it was happening so much. He told me when I first felt a reaction coming on, to take Benadryl and take a cold shower and keep an epi-pen with me at all times.
We moved to Texas and one day I had been busy and had not eaten anything except a hamburger that afternoon. Vince had grilled burgers and it was meat a friend had given us from a cow they had butchered. They were complaining about how much fat the butcher had put in the ground beef but it made an excellent burger. Vince grilled them and he was complaining because there was so much fat, the fire kept flaming up. We ate late in the afternoon and about midnight, I had a reaction. I took Benadryl, took a cold shower and did not have to go the ER but I remembered that I had eaten a hamburger in Louisiana when it happened last so I went straight to the internet and googled “hamburger, hives, itching, difficulty breathing”. That’s when I diagnosed my own allergy!
There’s a doctor in VA, Dr. Platts-Mills who was very instrumental in discovering this allergy. I found an article he had written on the internet and I emailed him about 1 a.m. and within minutes had a response. He put me in touch with an allergist in Austin who was familiar with this allergy. Five years ago, it was rare, or rarely diagnosed. Since then, I’ve mentioned it to three doctors here and given them my lab work. One kinda blew it off and didn’t believe it. A second had never heard of it but seemed interested, though she uses a lab that cannot test for the allergy and the third, the one I saw last week and see most often, was able to test so I had the blood work done yesterday for that – just to see what my number is. The test will come back with a number 0 – 100. Below .35 is normal. The weird thing is that the frequency and degree of your reaction doesn’t seem to depend a whole lot on your number. People with a reading of 30 may have more severe reactions than someone with a number of 70. My understanding is that if your numbers start decreasing, that’s a good sign – gives you hope that some day you may no longer have the allergy.
I am very lucky. There are people who cannot have anything that came from a mammal – milk, butter, even hand lotions that have any kind of animal product in them. There are IV fluids that can cause a reaction, hormones that are made from animal products, some of the deadening solutions used by dentists – it’s pretty scary for those who have a severe reaction. My reactions are about as good as you can get if you have this allergy . . in that I can control what I eat and almost totally avoid having a reaction. I was always of the opinion that if I drained off all the fat, I was safe but I made chili (that batch I canned recently) from 80/20 meat. I browned it and drained off all the fat. Monday I ate tamales with chili on top about 3 p.m. and Monday night about 11 p.m., I was up taking Benadryl and a cold shower. Sunday we had hamburger steak and gravy. I’m think having hamburger two days in a row was not a good idea.
I can eat lean steak, pork, bacon, sausage, milk, butter, ice cream so even if my problems never go away, I’m better off than many who have the allergy.
When I had the blood drawn yesterday, I asked how long it would take to get the results. The lab lady said “I have no idea. We’ve never done this test before.” Ahh . . the joy of having a weird allergy that no one has ever heard about.
When my son was 3 he ran a fever a twice for no apparent reason. He didn’t act or feel sick other than a fever. I got to thinking about what he had eaten each time and thought it might be buckwheat pancakes. I fed him buckwheat pancakes again to see if that was it and he had a fever that night. No more buckwheat pancakes for him! I was lucky he hadn’t had a more severe reaction and that I figured it out quickly.
Glad you finally figured out your food allergy!
I just listened to a podcast about this allergy. I’m not sure who did it. Maybe This American Life? Wish I could remember! It was very good.
Lisa G Boyer says
This was very interesting! Thanks for explaining alpha-gal. I sympathize. I have a dairy allergy, and it pretty much keeps me from eating anywhere but home. It’s not lactose intolerance, it’s an allergy–feels like I have a head cold and cough for days after I eat even a bit of dairy. If anyone thinks gluten is difficult to avoid, try avoiding milk, butter, casein, whey, anything with milk components! Restaurant chefs use a lot of butter, even on steaks. I read somewhere once that in the fifties, one of the common vaccines given to children was cultured or mixed somehow with dairy, so many children of that era formed allergies to milk–wish I could find that article again, it explained a lot. I think there are a lot more mysterious food allergies resulting from cross-reactions than we can imagine!
My niece always drains her ground beef and then rinsed it before she made, chili, tacos,etc. My daughter bought me 96/4 ground beef. It’s on the side for burger but is fine in chili,ect. Maybe adding something to it for burgers that would moisten it up before u cooked the hamburger. Does beef roast or beef stew meat bother you?
Vicky Ross says
My 37 year old son has had this allergy since he was 14. When it first showed up, we went to allergist after allergist with no results. We were even sent to Duke Medical Center in NC since they had a top rate allergy program. Nothing. When he was about 21 he diagnosed himself after extensive internet research. Although he can have milk, egg, and cheese, he can have no meat from a mammal. He’s become very disciplined with his eating.
Lee Young says
That’s fascinating, I’d never heard of this before. Thank you for explaining.
I have the same allergy. Began in 2009 with intense itching and hives from top to bottom. The reaction would occur 3-4 hours after eating but I didn’t make the connection. After two years of almost monthly reactions I finally went to an allergist. He put me on a regime of antihistamines to sort of reboot my body. Didn’t have reactions while on the meds but once I stopped they resumed but not as frequently. Then two years ago I was reading the Reader’s Digest. Two lines about the Lone Star tick causing meat allergies. That lightbulb exploded. I knew that’s what I had. We had moved to the country and I’d been bitten many many times. By this time the allergist had heard of alpha gal. He had 200 patients with it in his practice. I had the test and it was positive. Fortunately, my responses are not severe and for that I am thankful.
Nancy W. says
Judy, my sister has this allergy. She has to be careful with any meat from hooved animals. She makes chili and lasagna with ground turkey. She has had some luck with the frozen hamburgers at Sams that are angus beef. As you said this allergy is different for each person. She is hoping her allergy will get better and she can enjoy beef and pork again.
Karen Gleim says
Hi, Judy, I was diagnosed with hypersensitivity pneumonitis in April. It’s also called “farmer’s lung”. After being a quilter for over 35 years they say I am allergic to cotton fibers!!! I am supposed to get rid of all my quilting fabric and sewing machines! I am on oxygen anytime I stand up and move around. Prednisone is the only thing they have found that helps and because of the side effects I can’t keep taking it long term! Thanks for letting me vent!
That is a weird (to me) allergy! Good luck!
I am so glad that you are finally getting answers to your allergies. What scary stuff! I’ll never forgive myself for letting you take yourself to the hospital!!! I really thought my granddaughters were being too rowdy. 🙂