Alpha-gal disease

Chances are, if you or someone you know has alpha-gal, you have already done tons of searching and googling and learning about everything alpha-gal. I won’t bore you with what you already know. If you search alpha-gal, allergy to meat, or tick-borne allergies, you’ll find more information that you really want to.

Basically, you get bit by a tick. It infects you. Mammals have alpha-gal in their fat (except humans and apes). When your body starts to break down the sugars in the fat (where the alpha-gal lives), about 4-6 hours after you eat it, you have an allergic reaction ranging from digestive distress to full anaphylaxis.

Mammals are animals that give birth to live young, i.e., if it lays an egg, it’s not a mammal.  …Unless it’s a platypus.

But this is my journey with alpha-gal.

So, I was diagnosed back in late 2012 by an allergist who had just happened to have an influx of patients with similar stories. At the time he had something like 12 alpha-gal patients, and was frantically doing his own research on the subject. By his report at the time, there wasn’t a lot of information out there. And there wasn’t. No one I knew had even heard of it.

Now I have never been a chicken breast and turkey burger kind of girl. I like meat. I’ve always been a steak-and-potatoes kind of girl. I had already eliminated potatoes from my diet thanks to my earlier allergy testing, and now I had to eliminate pork, beef, lamb, goat, deer, rabbit…any meat that came from a mammal (which, believe it or not, has been something quite confusing for people around me who didn’t quite understand what I was saying. If I had a dollar for every time I had to explain that yes I can eat chicken because birds are not mammals, and no, I’m not a vegetarian, I just have an allergy to certain meats, I’d be quite a bit richer.). Also, thanks to the new sulfite sensitivity, my diet was even more limited. I could have fresh chicken or turkey, most fruits and vegetables, and rice.

I lost about 16 pounds in the first couple months.

I was just so dejected every time I went to the fridge. I hated going to the grocery store. I regularly ate chicken up to this point, and I occasionally replaced ground turkey for ground beef in meals when I was on a “healthy kick,” but after a month I wanted nothing to do with it. My cravings were horrible! “Not chicken” became an oft-used phrase around me. There are definitely a finite number of ways to prepare chicken and ground turkey before you start to get really bored and begin to resent anything with feathers. I even tried starting a cooking blog to keep me inspired…that didn’t last very long.

I didn’t want to cook, but I had to because I couldn’t eat out anymore. I had to read every label and research all food before I ate it. I couldn’t go anywhere without pre-planning what and where I could eat. My family, being very wonderfully understanding, didn’t eat it either, although I know they craved it. My ex ate lunch out every chance he could. I would occasionally make pork chops or steak for them, but it became very taxing to make two completely separate meals for us for fear of cross-contamination, and they would feel so guilty eating in front of me, they finally just asked me to stop.

I am a foodie. I love food. I love all the possibilities of food. I love to cook. I love to make food for others. I love to experiment with food. Food, all the glorious foods, were my thing. And that was gone.

The allergist said I could come back in a year to get retested as some people have had their alpha-gal levels go down over time with no re-infection from a tick bite. So a year later, on the dot, I went back.

The test came back positive again.

I went back again October 2014.

Positive again. And then he told me to wait two years. My hope for a normal diet, a normal life, was fading fast.

 

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