Alpha-gal newbie

JudyM6323

I have just recently been diagnosed with alpha-gal syndrome. I had stopped eating meat a few years ago for several reasons, but I noticed that I felt sick after eating it. And there were other odd, seemingly unrelated things going on too. I also had allergic reactions to things I'd never reacted to.

I walk in the woods at a local park with my dogs and thought nothing of ticks. I mean, I've gotten ticks all my life and it's no big deal. But now, if I have a bite, the itching is more intense than I've ever felt, the bite site swells and gets inflamed and they last for weeks. At the worst, I ended up in the ER with anaphalaxis. I didn't even know at that time what had triggered this response.

My allergist didn't offer to test for this and after a couple years of my own research, I happened upon the red meat allergy and specifically asked my doc for it. They were reluctant and I was told that they would still continue the same treatment even with a diagnosis. But they weren't taking into account all of the meat products used in everyday life that we don't even think about.

I recently was bitten again and got very ill afterwords. I was losing too much weight and was having to force myself to eat. I thought I'd start drinking protein shakes to at least get something in my body. I use plant milks, but I bought Naked Whey which is basically cow milk protein. I didn't know at this point that I had the allergy.

After drinking 2 shakes a day which is all I could handle, I got very weak and ill. My labs finally came back and I realized that in trying to boost my protein intake, I was literally poisoning myself. This is when I realized that I'm also allergic to animal byproducts as well. Milk, gelatin, lanolin… you get the picture. So several of my supplements, shampoos, hand creams, even medications were contributing. This would have been revealed with the blood test that the doc was reluctant to perform.

Its a bit overwhelming to suddenly find that eating something could be potentially life threatening. And not just one thing, but the food that I've been eating all my life. I'm perfectly happy changing my eating habits, but my stomach can only handle a few mouthfuls or a few ounces of anything at a time. And I have no appetite. I live on eggs, avocado toast (on my own home baked sourdough), apples and peanut butter. I absolutely can't consume enough of anything to fulfill my nutritional requirements. I've started eating as much roasted chicken breast as I can handle to amp the protein.

Has anyone else experienced this? And what do you do to sustain life? I know this sounds too extreme to be real, but I promise it's true. I see a nutritionist next week. Oh and just to make things interesting, I was also diagnosed with diabetes.

Thoughts and ideas on how to get what I need?