My Crazy Allergy

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.