ST. LOUIS — Tick bites can spread many diseases. One species, in particular, is known as the “lone star” tick. It’s becoming more known in the region and can cause a red meat allergy called alpha-gal syndrome, or AGS for short.
Jennifer Tietjen, whose mom suffers from AGS, said it took her 11 months to be diagnosed.
“We were driving on the highway. It came on very quickly, where she started vomiting. Her throat was tight, and I had to steer us off the highway. So it was really scary,” said Tietjen.
She said her mother’s reactions have gotten more severe since then.
“She was diagnosed in November 2021. Her symptoms started in January 2021,” Tietjen said. “She will have vomiting, rash; her throat will feel tight. She gets hoarse and feels restricted in her throat. So that started over the last few months.”
Lesley Callaham, a Ballwin resident, was diagnosed with AGS in 2019 after decades of issues.
“I started having some digestive issues in middle school, and they were diagnosed as IBS or lactose intolerance,” said Callaham. “I would work with my gastroenterologist, and we could never find a management strategy to actually manage it.”
Dr. Maya Jerath, a Washington University allergist, said this disease is commonly misdiagnosed but more cases are now being identified in Missouri.
“It is probably becoming more prevalent possibly due to an increase in tick reservoir in Missouri and possibly also because it’s being more and more recognized, so more people are being diagnosed with it,” said Dr. Jerath. “The idea that you can become allergic to a hamburger, or bacon, or to ribs, BBQ, they just seem like such innocuous foods. These are all foods that these patients have been eating their whole life and tolerating just fine.”
And in some cases, it can be more than red meat that causes a reaction.
“Dairy products affect most people with alpha-gal syndrome, but the hardest thing is that animal by-products are in so many things that we consume. It can be in hair shampoos, lotions, and hand soaps. Animal intestinal sutures are used in the body if you’ve had surgery so that’s something that we can’t have,” Callaham said.
Living with a food allergy like this can be quite isolating.
“It’s hard to be at a wedding, be at a friend’s house, be at a restaurant,” Callaham said. “Because it’s easy enough to avoid the meat or the diary product itself, but there’s so much issue with cross-contamination. Whether your turkey burger’s going to be cooked on a grill that they just had a regular hamburger on or if they put butter on something that you’re not aware of.”
And so you often don’t know what you’re eating when you’re eating something. There could be hidden sources of alpha-gal.
“I think we’ve lost track of what food products end up in the food on our plate,” said Dr. Jerath.
But Dr. Jerath said the majority of her patients live a normal life.
“Really for the most part this allergy can be managed with knowing a few key questions to ask before you eat a meal and understanding what foods come to what,” said Dr. Jerath. “People should not view it as a prison, which I think sometimes tends to happen. It’s difficult, but once they adapt their diet to not have that otherwise, they can lead a completely normal life.”