The tick season is in full swing, heightening concerns about a potentially serious tick-borne allergy to meat.
Identified nearly two decades ago, alpha-gal syndrome results from bites by the lone star tick in the U.S., although other ticks can cause the disease elsewhere. While at least one person has died from it, scientific understanding of the condition, including its optimal treatment, remains limited. Recently, researchers gathered for the first dedicated scientific conference on alpha-gal to seek solutions.
Scott Commins, a physician from the University of North Carolina School of Medicine and co-discoverer of alpha-gal syndrome, organized the event held on July 7 and 8. He stated the goal is to establish “a national set of priorities” for research, funding, and education as the number of cases grows.
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Although alpha-gal syndrome was once deemed rare in the U.S., a quick web search reveals its significant presence in public awareness: numerous support groups for alpha-gal exist on Reddit and Facebook, and certain TikToks about the condition have garnered tens of thousands of likes.
The largest alpha-gal Facebook group, “The AlphaGal Kitchen,” boasts 82,000 members—an increase of over 4,000 from two weeks ago, according to Sharon Forsyth, executive director of the Alpha-gal Alliance and the Alpha-gal Alliance Action Fund.
A 2023 U.S. Centers for Disease Control and Prevention study noted yearly increases in suspected alpha-gal cases from 2010 to 2022. The CDC estimates that 450,000 people have the disease, though this may be underestimated. Another study published on July 2 found that about one in four individuals in Arkansas, Kentucky, Missouri, Tennessee, and Virginia tested positive for the antibody linked to alpha-gal syndrome, though not all showed symptoms.
Despite the rising number of cases and public awareness, much about alpha-gal syndrome remains unknown to researchers.
It is known that the lone star tick and other ticks can carry the alpha-gal molecule, found in many mammals but not in humans or other primates. A tick bite can introduce this molecule into the bloodstream, leading to an immune response that causes an allergic reaction when the person consumes red meat or products like dairy or gelatin.
During the two-day alpha-gal conference, co-hosted by the University of North Carolina at Chapel Hill, North Carolina’s Department of Health and Human Services, and the CDC, discussions covered topics from tick populations to the syndrome’s effects on heart valves and gastrointestinal problems.
“There’s nothing else that would bring a veterinarian, a physician, an entomologist, and an epidemiologist all to the same room with knowledge about the same syndrome,” Commins remarked.
The ecological aspect contributes to the alpha-gal risk. The primary diet of lone star ticks is the blood of white-tailed deer, whose population has surged due to conservation and reforestation efforts along the East Coast post-industrial revolution.
“We’ve brought white-tailed deer back from the brink of extinction,” said Holly Gaff, a biology professor at Old Dominion University who spoke at the conference. “When we bring back deer, we bring back their parasites, and then we’re surprised when it happens in our own yards.”
“We’ve created this perfect ecology for the lone star ticks to explode,” she added.
The range of lone star ticks is spreading. Previously confined to the U.S. Southeast, they are now moving west and north, paralleling the spread of white-tailed deer and the warming climate, Gaff explained.
As interactions with ticks rise, so does the public and clinical awareness of the disease. Forsyth, an advocate for alpha-gal syndrome awareness, noted that there is a clear increase in diagnoses.
However, the syndrome’s unpredictability makes it difficult to diagnose.
For some, the immune response resembles an allergic reaction to red meat, but symptoms may not appear immediately. It can take hours for signs like hives, nausea, or breathing difficulties to emerge. After consuming mammalian products, some with the syndrome experience gastrointestinal issues that could be mistaken for food poisoning or irritable bowel syndrome. Others may have no issues with red meat but react to medications containing the alpha-gal molecule or new heart valves from pigs or cows.
Due to the syndrome’s varied presentation, Forsyth often acts as a helpline for those with questions.
“In the middle of the conference, I received a call from someone with an upcoming medical procedure,” she mentioned. “I’m not a doctor and have no medical background. But they had no one to consult and just learned their doctor planned to use heparin, derived from pig lungs or intestines. So I had to advise them, ‘Here’s some papers you can take to your doctor, and then trust them to conduct a risk-benefit analysis.’”
Forsyth also pushes for policies that would formally recognize alpha-gal as a major allergen and mandate changes to food and drug labeling. She notes that most pharmaceutical companies do not specify if their products contain alpha-gal.
Researchers remain uncertain why symptoms vary widely among individuals, or why some show no symptoms at all. Understanding the tick’s saliva and its effects on the body could pave the way for more human clinical trials on alpha-gal syndrome and potentially a vaccine, according to Commins’s team.
Gaff appreciated the conference’s “multidisciplinary nature,” given the diverse research areas involved.
“As researchers and patient groups, we have our own worlds, and so to bring us together is brilliant,” she expressed.
