But, I’ll starve!

Four years ago, a friend, very concerned over how I was steadily feeling worse despite my efforts to eat better and exercise, suggested I try an elimination diet. She had heard of adults that suddenly became allergic to dairy. She had also heard about some sort of beef allergy. Maybe my “healthy” food was making me sick.

“But, I’ll starve!” was my reply.

Taco Tuesday y’all. Beef and cheese and white salsa.  How was I supposed to live without Taco Tuesday?

Like any good stubborn woman, I ignored her questions and ate as I pleased. Some days I felt great. Some days I seemed to be dragging myself around, desperately trying to remember what I was just thinking about.

Last November, I couldn’t take it anymore. There were days I could barely move. I couldn’t think. I couldn’t remember things. I disliked everyone because they all needed me for something and I had nothing to give. I felt like the world’s largest disappointment.

Someone again suggested it was my food. I, again, blew them off. I carried myself to the doctor adamant that it was just a vitamin deficiency, or maybe it was early menopause.

Two pages of blood test results later, there was nothing wrong with me. Everything was perfect, even my dang cholesterol.  I was not in early menopause. I was not deficient in any vitamins. In fact, the blood work that should have been askew because of my auto-immune issue had returned perfectly normal as well! I was still positive for Sjogren’s, but none of the other markers were positive. How could that be?

I returned, sobbing, and desperate for answers. There was only one thing left to check: my food.

In April, I tested positive for a little known allergy called Alpha-Gal Syndrome. It is an allergy to all mammals (except humans and old world apes). The news touts it as a tick borne illness, which is it, but it can also come from other bug bites. We believe mine began years ago from a spider bite, and was intensified in August 2016 by a deer fly bite, and then pushed over the edge this spring by a tiny tick bite.

I had no idea how sick I had really become.

After spending a few weeks cleaning up my eating and cleaning my kitchen to eliminate cross contamination, I was still having reactions. Only, now I could feel them. I had begun to feel better, my head was clearing, and the pain was letting up. Now, when I would come in contact with mammal I could feel the changes happening in my body. But from where?? I had not eaten anything! No beef, no bacon, no cheese!

I had to change my shampoo, my toothpaste, my deodorant. I had to double check labels and triple check my medicines. Even my daily vitamins, made from vegetables, were making me sick because they were in gel caps (made from beef).

After all those changes, after beginning to feel “normal” again, I suddenly was sick all over again. Everything was causing a reaction: sunshine, heat, dust, stress, potatoes, salt, mosquito bites, swimming pools.

I found an expert, and am finally on the mend. This allergy, for whatever reason, wreaks havoc on your system. Having lived with it for years without knowing it, my body’s mast cells have begun to overreact to everything. With extra medicines and double the antihistamines, I am finding relief!

Today, I am taking our daughter to the doctor. She hasn’t been feeling well for a while now, and taking after her mother, she refuses to do an elimination diet unless she has to eliminate food. Her words when I asked her to try, “But Momma, I’ll starve.”

I haven’t starved yet. There was a time of grieving. There have been tears in the grocery store. There have been a couple of times I said “let’s test it” and regretted it the next day. No matter how much I love alfredo sauce there is no alfredo sauce worth the bathroom time involved the next day. You adapt. You learn to not be afraid to try something new.

Unless it’s fish. I tried. Really I did. I’m not trying anymore. {So stop asking <–to my husband}

Food allergies are no joke. This one goes beyond just food. Mammal is in almost everything we use, unless you seek out a vegan alternative. There is no allergy designation on products for mammal. AGers can have chicken, turkey, fish, eggs, and honey. We can have emu and ostrich. We can have shellfish. We can have all of this unless we have a secondary allergy. But, since there is not “No Mammal” label on food, we often have to choose vegan options just to be safe. Gels are normally mammal, but can be vegetable derived, we have to avoid them all or call the manufacturer for clarification. Even then, the ingredient can change from one batch to the next without warning. This bottle of antihistamine is safe, but the same brand’s bottle a month from now may not be. Even vegan certified foods may not be safe. Many contain carrageenan. Carrageenan is from seaweed, technically vegetation, however it’s molecular structure is so similar to Alpha Galactose 1,3 Galactose that it can cause our bodies to react to it anyway.

I am lucky. I have yet to need the Emergency Room. I have yet to need an EpiPen. I did spend 4 hours in bed yesterday because my son put on his deodorant and then hugged me. My arms were bare, and it got on my skin.

If you would like to know more about Alpha-Gal you can check out some of the information here.  If you would like to speak with others who have Alpha-Gal, join us here in our Facebook group.  AG is different for everyone. Many can still eat dairy, many just can’t eat beef, and many still can’t even drive by a restaurant and inhale the fumes. Please help us spread awareness. Research is slow and limited at this time.