Local Woman Shares Alpha-Gal Syndrome Story, Advocates for More Education

GODFREY - A local Godfrey resident didn’t think much about it when she discovered a tick bite after sleeping in bed with her dog. Except then she started getting sick.

With annual bloodwork coming up and more symptoms appearing every day, the woman, who asked to remain anonymous, called her doctor about testing for tickborne illnesses. It was an “eye roll” moment to even ask, she said, but when the tests came back, both she and her doctor were shocked with the diagnosis: alpha-gal syndrome.

“It’s life-altering,” said the woman, who has now been navigating the diagnosis for nearly a year.

Alpha-gal is a molecule found in most mammals, except humans. It’s also in the saliva of some ticks. When a tick bites a person, it can transfer the alpha-gal molecule to its victim, which triggers an allergic reaction.

This illness is most notorious for making sufferers unable to tolerate red meat. But the Godfrey resident said it goes much deeper than that. While everyone’s experience with AGS is different, it’s known as an “anytime allergy, not an every-time allergy,” meaning everybody reacts differently to different materials — and the reactions vary wildly.

For the Godfrey resident, pretty much any mammal-based product is a no-go. She can tolerate chicken, seafood, vegetables, fruit and eggs, but red meat and dairy products will trigger a reaction. This means cross-contaminated items, like cutting boards or grills that have had red meat on them, are out of the question.

Even these “safe” foods aren’t always safe. The woman has found that most chicken and turkey contain carrageenan, which contains alpha-gal. Rosemary extract, a common preservative, contains fats that are usually made out of mammals. Natural flavors often contain mammal products. Most bottled waters are filtered through bone char.

It goes beyond food. A lot of soaps, lotions, shampoos, and even toilet papers contain collagen. Leather shoes or wool sweaters aren’t usable. Perfumes and air fresheners can cause reactions because the body has developed a major histamine response.

Gel capsules, so most over-the-counter medications, aren’t good. A lot of prescription medications also contain mammal, including vaccines and medical devices like heart stents.

The woman, who is a teacher, shared that she was coloring with her students one day when her hand started to swell; she had no idea crayons contained beef tallow.

But this is not the only possible reaction. People with AGS can experience a range of reactions, often delayed, making it even harder to discern what caused it and what to avoid next time.

Hives, swollen tongue, shortness of breath, gastrointestinal issues, sweating, and, most scary, even anaphylaxis are all possible, and it’s difficult to know what will set off a reaction until you’ve experienced one. You just hope, said the Godfrey resident, that the reactions will stay mild.

“Even if you maybe had GI issues for the first 20 reactions, then the 21st you could be anaphylactic,” she said. “Every day is like Russian roulette.”

But even so, the Godfrey resident considers herself lucky, because she had heard of alpha-gal syndrome before and asked her doctor to test her. If she had no idea, if she didn’t have bloodwork scheduled anyway, she might’ve gone ten or 20 years without a diagnosis, as many people do.

Plus, she’s never had to change her toothpaste. Most AGS patients have to experiment with multiple brands and products before they find something that works for them. She’s done her share of experimenting, but her toothpaste hasn’t betrayed her yet.

The past year since the diagnosis has been a long process of meeting with allergists, tracking reactions, and adjusting. The woman takes her work meetings on Zoom now, as the mix of perfumes in a conference room can trigger a reaction. Her husband cooks his meals on the grill outside, because even the smell of red meat makes her “so sick.”

“It doesn’t just affect me. It affects everyone around me,” she shared.

But maybe the most frustrating thing for the woman is a conversation she had recently with a healthcare worker, who told her they had never heard of AGS before because it was so rare. In fact, it’s not. Alpha-gal syndrome is the tenth most common food allergy. It has a very high rate of anaphylactic reactions.

But even so, alpha-gal isn’t classified as a major food allergen, so it mostly goes unlabeled. The AGS community, including the Godfrey resident, is pushing for clearer labels on products and food items.

She also pointed out that AGS and other tickborne illnesses are becoming more common and disproportionately affect rural areas, where residents are also less likely to have access to specialty care.

Hunters are at the highest risk, but the Godfrey woman reiterated that she was simply in bed when she was bitten. The best way to avoid alpha-gal syndrome is to protect yourself against tick bites altogether, as much as you can.

As she shares her story, the Godfrey resident is hoping to spread awareness of alpha-gal syndrome so that healthcare professionals and legislators can understand the severity of this illness and how to help. Clearer labels and better education would go a long way, she said.

“I feel like it is so important to educate the health care system and work on the legislation to get things labeled and reported, so people don't think it's so rare. It's not rare,” she added. “It’s just becoming more and more.”

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