Not a Nice Gal, Alpha Gal

Last week, I discovered a tick on me. Again. I’d foolishly gone hiking without using bug spray, and that choice came back to bite me. Literally. Two more irritated spots to add to a plethora I’ve picked up as an occupational hazard as an outdoor writer. At least this one didn’t attach.

Unlike the one that changed my life.

I spent more than five years trying to unravel a medical mystery called Alpha-Gal syndrome. With Covid tossed into the middle of the mix as I tried to find out what was wrong with me, it was a harsh reminder of all medical science doesn’t know and how insistent doctors can be that their body of knowledge is enough to solve a problem. As I discovered, it isn’t.

I’d heard about Alpha Gal thanks to the hiking community. Lone star ticks are the primary carriers. If one happens to latch onto you and pass on a sugar molecule called alpha-gal, it causes your body to ramp up your immune system in response to red meat. For some, it causes respiratory anaphylaxis. Unlike most allergens, it’s normally a delayed reaction, up to six hours after a meal. My symptoms were gastrointestinal, which made it hellish to diagnose. Especially since I was eating a keto – largely meat – diet at the time.

I can pinpoint my first severe reaction to January 2019. A chili recipe I’d created myself and made for a couple decades triggered projectile vomiting a few hours later. For the first time in my life, everything in my system came back up. Once the solids were out, liquids followed. Then bile. It was horrifying. In retrospect, I should’ve gone to the hospital, but I’d had a run-in with our local ER misdiagnosing me badly a year or so before.

I stopped eating chili. Okay, we went to Texas and visited this teeny little bar in Amarillo where I just had to try it. It gave me awful reflux. Reflux took over my life. I couldn’t recall ever having it before. I stopped eating all fried foods. Propped my head up while sleeping. Had to sit up to sleep, sometimes. And took all the pills the doctor said to.

It didn’t relent. Instead, my liver and pancreas became painful. I was scared of cancer. I tried to get a referral to Mayo Clinic and my GI’s new PA refused. I changed doctors. Still no luck with a referral. They took my insistence as an insult. Mayo would not see me without a referral. I became very depressed.

A car accident that caused a blow to my stomach made it all worse, as did the drugs I was given for nausea. The nausea wouldn’t relent. The reflux meds made the reflux worse. I feared maybe my metformin was damaging my liver. My blood sugar kept climbing. My doctor doubled my metformin dose and my liver hurt so bad I simply stopped taking it rather than argue about it over and over again. The reflux crept up into my face, burning my sinuses and my eyes. My new GI rolled his eyes at my description of the pain and said it was impossible. Right. You live through this and tell me what it feels like. His PA thought it was impossible for coffee to calm my relentless morning nausea. I did a FODMAP diet and eliminated most of what I liked to eat. Except the coffee. It soothed me.

Meanwhile, I stopped eating steak. It sat like a rock in my stomach. I backed off other meats. And I brought up alpha-gal to my doctors. All of them waved it off as a possibility.

My GI prescribed invasive tests. They told me everything that could be possibly wrong with my digestive system was, save cancer, and that, too, might just be around the corner. For nearly six weeks after an endoscopy, I could not swallow properly. My throat wanted to close up. I ate cooked eggs and spinach and very little else. Despite a minimalist diet, my blood sugar climbed without metformin. I sought help and was deferred by a PA who didn’t think 170 sounded high. I gave up on referrals and reached out to an endrocrinologist myself. Three month wait. That forced me to cancel a bucket list overseas trip for fear I’d need a medivac from the backcountry.

All this from a tick bite. Or two. Or a dozen. Five years of fear, misery, and pain. Not until early in 2024, when I met a hiker suffering the same symptoms as I who’d had his suspicions confirmed, did I learn I’d needed to see an allergist all along.

One visit, one blood test, and bingo! Yes, a tick had “made me vegetarian.” My new allergist gave me an epi-pen and told me to stop eating mammal meat.

Ah, were it so simple.

Researching online, I discovered the rashes and itching I’d also had were likely tied to lotions, shampoos, and soaps using mammal derivatives. A crazy amount of products are made from the bones and fat of cows and pigs, including gelatin (what likely caused my endoscopy issue), bone char used to filter water, and chemicals with “stearate” in the name. More elimination of products followed. At first I could still eat cheese and use butter and have heavy cream in my coffee. Now I’m lactose intolerant, too

Cross-contamination of cooking surfaces is a big issue while traveling. Pancakes or eggs cooked on a griddle where sausage or bacon are cooked made me sick at cafes. After suffering gastrointestinal anaphylaxis from beans cooked (unbeknownst to me) in lard, I’ve gotten over the embarrassment of asking wait staff what oil they use for frying and whether the cook or chef can prepare my chicken or fish in a pan rather than on the grill used for burgers and steaks. We’ve had to walk out of restaurants who say no. At some, I default to chicken salad or just salad.

It is wearying. All of my minor allergies, from fur to feathers to dust mites and mold and smoke, have amped up 1000%.

Just try finding a hotel or an airline catering to people who can’t be around animals. While saddened by the thought, I’m resigned to the fact I may never fly commercially again. I carry my own breakfast items on trips, since I can rarely trust anything a hotel puts out on their breakfast bar.

These days, my immune system is almost always on high alert. Knowing why makes dealing with it manageable. Not easy, but I feel better way more often than I don’t.

After five years of misery, a win!

Lesson learned: be your own advocate. I had to do a lot of research online with support groups and in medical journals, and I had to change doctors multiple times to be heard. If you are suffering any of the symptoms I describe above, especially unrelenting reflux, see an allergist and get tested. Given how easily people with this allergy can die from anaphylaxis, knowing whether your reflux is caused by alpha gal could save your life.

To learn more to understand the impact of this disease and to talk to your doctors, please visit Alpha-gal Information, where a portion of the website is specifically for medical providers and includes useful information on what to do if you are newly diagnosed.