What to know about the alpha-gal allergy

My husband was recently diagnosed with alpha-gal syndrome. It’s no joke. What started as simple itching in October 2024 turned into months of confusion, frustration and a whole lot of unnecessary stress.

At first, it didn’t seem like much. Just itching and then hives that wouldn’t quit. After a week, he called his nurse practitioner and got an itch cream. When that didn’t work, three weeks later he went to a dermatologist.

We suggested testing for tick-borne illness, specifically alpha-gal syndrome, when they drew blood. We assumed it was being checked. It wasn’t.

What followed were eight skin biopsies on his back and legs, another cream, more pills and mounting medical bills. Then came an order for a chest CT scan to rule out a malignancy as the cause of the hives.

Something about that didn’t sit right with me. His bilirubin was slightly elevated, and I wondered why we weren’t looking at the liver or gallbladder instead.

The dermatologist told me his primary care provider would have to order that. At this point we were exhausted, discouraged and, even with decent insurance, out thousands of dollars.

So, he went back to his primary care provider 16 months after that first call. Honestly, I wish we had started and stayed there. She listened. Really listened.

She ordered a full blood panel, including the alpha-gal test. A few days later, she called with the answer: Alpha-gal syndrome. Allergic to beef and lamb.

We don’t eat much lamb, but we raise cattle, and we eat a lot of beef. Suddenly the food we produce and enjoy became something dangerous for him.

On the other end of the spectrum, it was and is a relief knowing what has caused the constant itching, hives and a wide variety of inexplicable symptoms.

Alpha-gal allergy is triggered by a sugar molecule introduced through certain tick bites, and reactions often occur hours after eating which makes it harder to recognize. Symptoms can vary widely and do not always resemble a typical food allergy.

Jim experienced a broad range of them, including itching, hives, flushing and swelling of the lips and face, along with fatigue and swelling in his extremities. He also dealt with a variety of digestive issues, sometimes severe enough to wake him from sleep.

Respiratory symptoms can include coughing, wheezing, throat tightness and shortness of breath. In more serious cases, reactions may involve dizziness, a rapid heartbeat, a drop in blood pressure, or even anaphylaxis. Not everyone follows the same pattern, and symptoms can range from mild to life-threatening.

For people in agriculture and rural communities, take heed. We work outside. We check fences, walk fields, work cattle, hunt, hike and live where ticks thrive.

One small bite can create a life-changing food allergy. Red meat and sometimes dairy and other mammal-derived products can cause an allergic reaction.

We’ve learned that not everyone with alpha-gal syndrome reacts the same to meat of every species. Some can eat pork, but not beef, lamb, venison, or bison.

Some cannot drink milk, but can eat cheese. Others must practice strict avoidance of all mammalian products or risk going into anaphylactic shock.

Alpha-gal syndrome may last a lifetime — I have a friend who has had it for 33 years — or you may be able to begin introducing mammalian products back into your diet within a few months.

We are learning. For us, for now, no meat at all. We are strictly “fins and feathers” and grateful that after 16 months we have a diagnosis and the hives are finally subsiding.