Alpha-Gal: A Provider's Perspective

I wanted to share my thought process and observations with my own recent experience with alpha-gal. 

Alpha-gal, short for Alpha-galactose, refers to a complex sugar molecule found in the tissues of non-primate mammals, including cows, pigs, and other animals. It is also present in certain insects like ticks. Alpha-gal is known to trigger an immune response in some individuals, leading to an allergy called Alpha-gal syndrome. People with this condition may experience delayed allergic reactions after consuming red meat or products derived from mammals. Symptoms can range from mild to severe and may include hives, gastrointestinal discomfort, or even anaphylaxis. Alpha-gal has gained attention in recent years due to its association with tick bites and its impact on dietary choices and lifestyle adjustments for affected individuals.

Almost 5 years ago when I was doing my initial training with Dr. Soliman, about 1/3 of the class-tested weak to alpha-gal who didn’t think they had it—including myself. That explained why sometimes after I had bacon and eggs my stomach was off—I was beginning to think I had pepper sensitivity but we checked pepper too and only alpha-gal was weak. We did each other's needles as part of learning the process and 3 weeks later after I took out my needles, I had no issues with bacon and eggs. During that 3 weeks, I didn’t eat mammal meat or drink milk but otherwise, I didn’t kill myself avoiding mammal while the needles were in because I didn’t realize I even had an issue. Since then, I haven’t had any issues with mammal.

In an interesting twist of fate, my last tick experience resulted in a tick that tested negative for carrying any pathogens (thanks to the University of Kentucky tick tracking program, that testing was free for me) but I found myself experiencing what I thought was food poisoning about 6 weeks after the bite. I rarely get a stomach bug, but it didn’t feel quite like food poisoning. During that time, there was a stomach bug going around, so I stayed home to not share any bugs with my patients. I felt rough all day, but better by dinner which included mac & cheese with pork sausage…and I started feeling off again. I realized both dinners had pork. I took a Pepcid and within an hour I started feeling better—never progressed to vomiting. By the next morning, I felt great but was reasonably certain I had alpha-gal. It felt a lot like my patients' stories (I see a lot of alpha-gal patients!). It was going to be a couple of weeks to get into my doctor to get the blood test, but I see this every day. 

The next morning at the office to get a clear test, I pull the basic alpha-gal filters: I check (alpha-gal, beef, pork, lamb, gluten, and MCAS) and to not bias my testing (because I know I might be weak to all of them), I add in some I’m pretty sure are safe: chicken, eggs, oats, rice, and avocado. My office manager has a good sense of feel and with a little coaching, I have  good confidence in her ability to provide even pressure with each filter. She randomly puts them in the tray and tests me without looking at the labels with me looking away from the tray so I can’t see them—some test weak, some test strong…no surprise.

What was a surprise was the results—not the alpha-gal testing weak (I was pretty sure on that one), but the individual meats don’t test weak, nor does the gluten. It’s surprising as is the rice and the oats, but it also explains why I felt so bad the day before. I had a large bowl of oatmeal for breakfast and again for lunch to settle my stomach and felt bad all day. I conducted further testing using my specially formulated spays (currently in development, stay tuned!) with promising results. Now the question is how much mammal do I need to avoid to feel good? The meats and large amounts of dairy are out, but perhaps I can keep the cream in my coffee...

I do a 24-hour strict no-mammal or dairy diet and I feel great. Then I had my usual cream in my coffee—no symptoms initially, but around midday, I realize I have no motivation—I don’t want to be outside, I don’t feel like riding my horse, I can’t focus on anything I’m doing! Sure these aren’t allergy symptoms in the traditional sense, but they are not “my normal” by a long shot. I then eliminate regular cream for the next few weeks. I used coconut cream in my coffee and my brain wasn’t falling apart the afternoon! I take my specially formulated sprays and prep mammal-free meals for the week; including a dairy-free dark chocolate espresso bread with 9g of protein, no refined sugar, and no saturated fats. It’s not gluten-free; I adapted it from a gluten-free paleo recipe and swapped the coconut flour for organic white flour, so it easily could be.

In the end, it turns out allergies aren’t monolithicit’s not always the same reaction to different things. I hear patients all the time tell me they tolerate dairy just fine and their allergist said they could have it because it didn’t show on the blood test—but just because you aren’t having hives, throwing up, or experiencing the “typical” allergies it doesn’t mean you are tolerating it. I’m not saying some people don’t tolerate dairy just fine with alpha-gal, I see patients who do. But it’s worth cutting things out for a few days to see what improves. 

It’s not easy to do—I get it! My husband is not thrilled with this turn of events because he does a lot of our cooking and now he’s having to adapt for me. I thought a cake we made turned out pretty well, but he didn’t like it. Once I figure out why, I can hopefully tweak the recipe to work for both of us (I suspect he tastes too much coconut from the coconut oil or it wasn’t sweet enough for his taste). Apple sauce, banana, or shredded zucchini would have worked to tweak the taste too. I’ll try it again and see what happens. Cooking is an alchemy of transforming a pile of things into something else, and there’s more than one way to get there!

I’m pretty aware of what my body is feeling these days, I’ve learned the hard way to listen to it. My hope is you don’t have to suffer from not listening to your body—to be curious and notice not just the physical sensations you experience but mentally and emotionally how you feel as well and take that into account when making your food choices.

Yours in health,

Jenny-Marie

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