What It’s Like Living With Alpha-Gal Syndrome

At the age of 11, my family didn’t fret over my sudden complaint of intense nausea and stomach cramps after eating a cheeseburger and fries. My symptoms showed up four hours after we’d grabbed fast food, breaking the expected pattern for food poisoning. Plus, no one else in the family had developed similar problems despite having the same meal.

Unfortunately my symptoms persisted for months after that initial cheeseburger — and eventually my parents took me to the pediatrician. The best my provider came up with? A new intolerance to red meat. It wasn’t considered too abnormal; people’s digestive systems do change with age. They reasoned I shouldn’t have further problems as long as I avoided beef.

How it Started

For 33 years, I continued to suffer GI problems — even with the diet change. I cut out red meat, but strange symptoms continued to surface. I never felt quite right, battling stabbing pains throughout my abdomen that cropped up at odd hours. In particular, I often woke in the middle of the night, curled up around a cramping stomach, spitting up bile alternated with waves of nausea. Diagnosed with gastroesophageal reflux disease (GERD) at 17, the heartburn intensified and reached higher and higher, eventually affecting my larynx and turning my voice harsh.

From 2003 to 2014, I progressed from taking antacids to H-2 blockers to proton pump inhibitors, none of which worked for very long. Eventually I lost my appetite for most meals, and meat was no longer my only problem. Food diaries requested by my gastroenterologists revealed no pattern for the stomach upset. One day, it seemed chicken was to blame for my nausea. The next, it looked more like mayonnaise was the issue. One week, I seemed to tolerate bread, but then it caused massive cramping the next. I eliminated more and more foods from my diet, hoping for some kind of relief — without success.

Ondansetron (an anti-nausea medication) became my go-to to quell the symptoms, while doctors ordered an endless string of tests: Lab work to check for Crohn’s, Celiac disease, or deficiencies in B vitamins; barium swallows to examine the structure of my esophagus; CT scans of my GI tract, liver, pancreas, and stomach; colonoscopies; an ambulatory acid probe to determine the severity of my reflux; esophageal manometry to test the muscle strength of my swallow; and a gastric emptying test to ensure I wasn’t retaining food in my stomach. Everything came back normal — or at least not abnormal enough to worry about.

In 2015, a surgeon performed Nissen fundoplication to address the GERD. The surgery involved looping the upper part of my stomach around my esophagus and closing the lower sphincter and preventing reflux. Still, my stomach pain and nausea persisted.

The Alpha-Gal Syndrome Diagnosis

In 2022, I discovered a new potential diagnosis: alpha-gal syndrome. I came across an IG conversation with Janine K. Spendlove, a science-fiction author, pilot, and alpha-gal patient where she discussed her symptoms and answered questions about AGS. I didn’t know much about the condition prior to this. But her experience resonated with me and after the talk, I did some research to learn more about the condition.

“Alpha-gal syndrome (AGS) is a serious food allergy to red meat. It occurs most often in adults bitten by certain types of ticks,” according to the Cleveland Clinic. Symptoms can include, but are not limited to, gastrointestinal problems, including abdominal pain, diarrhea, heartburn, nausea, indigestion, muscle cramps, nausea, and vomiting.

Naturally, I’d been wary of ticks growing up. But so long as I never saw a resulting bull’s eye develop on my skin, I never paid attention to what ticks I removed.

After doing my own research and connecting with Janine to learn more, I decided to get tested. When I brought up alpha-gal syndrome to my doctor, she’d never heard of the condition. I’m not sure she would have known what labs to order if I hadn’t looked up the test code before my appointment. But LapCorp provided a complete explanation, and I had no trouble taking the test orders over the same day.

With my previous history of extensive testing, I expected AGS to be complicated to diagnose. But all I needed was a simple blood test. In four days, the results came back confirming I wasn’t crazy, my GI tract was at fault (sort of, considering it suffered the allergic reaction), and there had been something wrong with me for the majority of my life.

How I Took Control of My Alpha-Gan Syndrome

I’ve changed my diet completely since learning about AGS. Not only have I cut out all mammals (previously, I had eliminated beef, but not pork), but all products made from mammals, too. This means gelatin and glycerin, collagen (something I’d been adding to my morning smoothies for years), and whey (another big ingredient in almost everything I ate). Most of my diet is now plant-based (although I tried — and enjoyed! —duck for the first time on a cruise).

I also learned that I needed to avoid cross-contamination. If I ate an Impossible Burger from a grill used to cook a beef patty or fry bacon, I’d still be exposed to the meat. The same is true for chicken or French fries cooked in oil beside the grill.

On a day-to-day basis navigating the condition can be pretty cumbersome. I often get furrowed brows and strange looks when I show someone the allergy card I made to explain my diet needs. I have to order vegan versions of my supplements and medications. Servers spend extra time with me on the rare occasions when I eat out, as I ask about ingredients and request that my food be cooked separately. People stare as I read ingredient labels everywhere — and often reject popular food items.

But it’s all worth it when it means my body digests food without a problem. I haven’t been nauseous in four months, and I don’t wake up with stomach pain or abdominal cramps. When my gastroenterologist asked how I felt at my most recent recheck in mid-March, I smiled and said, “Normal?”

My advice for others struggling to find answers about your health? Never stop pushing. You know your body better than anyone.

Andria Kennedy is a Virginia-based freelance writer. In addition to POPSUGAR, her work has appeared in The Strategist, Electric Lit, HuffPost Personal, and elsewhere. She’s an award-winning speculative-fiction writer and, as a Spoonie herself, advocates for better recognition and research for invisible illnesses.