One November evening in 2017, Harmony Litteral, then 8, woke with swollen lips and tongue and a constricted throat, symptoms of a severe allergic reaction called anaphylaxis. Her mom, Mandy Litteral, rushed her to the hospital, where doctors peppered the two with questions, including about what Harmony last ate. 

“It was Gatorade and ibuprofen, because her head hurt,” Litteral, 42, a teacher in Lexington, Kentucky, told CIDRAP News. 

The family followed up with an allergist, who tested Harmony for celiac disease. But the results were negative. Still, the doctor suspected that she had a gluten sensitivity and urged her to skip foods containing it, such as bread and pasta. She took that as an opportunity to enjoy other foods she loved. 

“When she started to avoid gluten, she was like, ‘Well, if I can’t eat bread, I’m going to eat bacon,’” Litteral recalls. “She lived on bacon and burgers.” 

Yet hours after eating, Harmony sometimes experienced the same symptoms she had suffered that November night. By this time, Litteral began believing something other than gluten was sparking this reaction in her daughter. After learning about alpha-gal syndrome (AGS), a meat allergy caused by a tick bite, she brought it up to Harmony’s doctor. 

“Her primary doctor was like, ‘I’ve never heard of this,’” Litteral recalled. 

At last, an accurate diagnosis

A few months before Harmony’s allergic reactions started, she was setting up her show-rabbit stall at the county fairgrounds when a tick bit her. Litteral took Harmony to an urgent care center, where a doctor removed the tick. Following the bite, Harmony never developed symptoms associated with more commonly known tick-borne diseases such as Lyme disease. 

After visiting doctors for years, Harmony received an AGS diagnosis in 2020. But even then, doctors weren’t sure how to treat it, and Harmony continued getting sicker. She grappled with gastrointestinal (GI) issues, kidney stones, and increasing allergic reactions. Even smelling fumes from cooking meat caused her throat to close. 

“She was in anaphylaxis every single day,” Litteral said. “We had no idea what was going on or what to avoid.” 

In 2021, after referrals to different hospitals and specialists, Harmony visited Scott Commins, MD, PhD, an associate professor of medicine and pediatrics and vice chief for allergy, immunology, and rheumatology at the University of North Carolina at Chapel Hill School of Medicine. He told the family that if Harmony avoided mammal products, including pork, beef, deer, and dairy, she could put her allergy into remission by the time she turned 18, Litteral said. 

“People are not educated enough about alpha-gal,” she said. “Alpha-gal affects people in different ways. It’s not like any other allergy.” 

From mild stomach upset to life-threatening reactions

Alpha-gal syndrome is a red-meat allergy that some people develop after being bitten by a tick. Experts believe around a half a million people in the United States have it, a number extrapolated from a 2023 Morbidity and Mortality Weekly Report study estimating that 450,000 people in the United States had AGS. 

“Based on more recent data and the trends that we’re seeing, we probably imagine that there have been an additional 50,000 cases,” Commins told CIDRAP News.