A decade ago, Scott Curatolo-Wagemann knew of only one person stricken with a tick-borne ailment called alpha-gal syndrome — the husband of his wife’s cousin.
The list has since grown in his corner of Long Island: His sister, who was bitten this past summer, has it. So does his sister’s best friend. Then there’s the mother of a boy on his son’s baseball team. The phlebotomist at the Labcorp office where he gets blood drawn has it.
And, yes, Mr. Curatolo-Wagemann has alpha-gal, too.
Once regarded as a rarity, the disease, which involves an allergy to red meat that develops after a tick bite, has emerged as a significant health menace, with the Centers for Disease Control and Prevention estimating that as many as 450,000 people nationwide may have had it in the past 15 years. And that is probably an undercount, said Dr. Scott Commins, who helped solve the mystery of alpha-gal syndrome about two decades ago.
More recently, Dr. Commins was involved in testing, largely at random, 3,000 samples from blood donors in 10 states for alpha-gal antibodies. A forthcoming study shows that in Arkansas, Kentucky and Missouri, nearly 30 percent of samples tested positive, although that doesn’t mean that all — or even most — had allergic symptoms, he said.
Dr. Commins, a professor at the University of North Carolina at Chapel Hill School of Medicine, called the implications “mind-blowing.”
In recent months, an even more lethal portrait of the disease has emerged.
A report in a medical journal last fall chronicled what was believed to be the first documented death linked to the red-meat allergy. Now, alpha-gal syndrome is suspected in at least three more deaths, a finding that has not previously been reported.
The allergy has also been identified as a potential cause of wide-ranging health woes. Doctors are finding that alpha-gal syndrome may explain gastrointestinal problems in some patients diagnosed with irritable bowel syndrome. Other physicians speculate that it may contribute to cardiovascular disease.
In some communities, it feels like the tick-borne ailment is everywhere.
Mr. Curatolo-Wagemann lives in Ridge, a hamlet in Long Island’s Suffolk County. That county is home to perhaps 4 percent of alpha-gal cases nationwide, according to the C.D.C.
Other hot spots include Virginia, where scientists estimate that 2 percent of residents in some counties have had allergic reactions to red meat that started with tick bites. It is prevalent in the Ozarks and beyond. It is a growing problem in Kentucky, Tennessee and a belt of states from North Carolina to Massachusetts.
For most people with active cases of alpha-gal, an allergic reaction involves hives, vomiting or diarrhea. It begins several hours after eating meat, and is followed by quick recovery. But some reactions are more severe, landing people in the hospital.
In New Jersey, a JetBlue pilot died in 2024 after eating a hamburger.
In Kentucky, a widow said that her husband died from an anaphylactic reaction to beef tacos in 2023.
In Australia, a coroner concluded last month that alpha-gal syndrome had caused a teenager’s death nearly four years earlier.
And in the Midwest, the death in December of a 70-year-old Kansan is bringing renewed attention to how red meat is not the only potential trigger for those with alpha-gal syndrome.
Most alpha-gal cases in the United States are believed to begin with a bite from the lone star tick. Named for the signature white spot on the back of adult females, the tick is an aggressive hunter, with an unusually long mouth. The resurgence of the white-tailed deer, the tick’s most important host, is one factor driving the rising prevalence of the allergy.
The ticks’ saliva contains a sugar molecule called alpha-gal. The bite can trigger an overactive immune response, causing an allergic reaction when alpha-gal is next encountered. That same sugar molecule is in the tissue of many mammals, though not humans. That’s why red meat poses a risk.
After he was bitten, Mr. Curatolo-Wagemann, a 54-year-old marine biologist, would erupt in hives when he ate pork or beef, forcing him to change his diet. He tends to order chicken fingers when eating out. And it has changed his relationship with nature, with his thoughts turning to ticks when his children play outdoors.
This is not the first time he has dealt with a health threat. As a young man, he was attacked by a shark, causing permanent damage to one of his legs. Then, about 10 years ago, he survived testicular cancer.
“This small tick bite has affected me more than a shark bite or cancer,” Mr. Curatolo-Wagemann said.
Alpha-gal’s role in triggering dangerous allergic reactions was discovered nearly two decades ago after a spate of fatal and near fatal reactions to a new cancer drug, cetuximab. It turned out that drug contained the sugar molecule. But the severe reactions to the medicine were concentrated in certain regions, such as the southeastern United States, confounding researchers.
Eventually, they concluded that a bite from the lone star tick seemed to prime people’s immune systems to dispatch an army of antibodies, stirring an allergic reaction.
The researchers came to suspect that the same pattern — tick bites and an ensuing hypersensitivity to alpha-gal — explained another growing phenomenon: allergic reactions to red meat.
At first, alpha-gal syndrome seemed low on the list of debilitating tick-borne diseases. But a 2023 report from the C.D.C. shattered that understanding. It identified 110,229 suspected alpha-gal cases nationwide between 2010 and 2022, based on blood tests for a specific antibody. The report said that the true number could be as high as 450,000, noting that many people with the allergy were unlikely to ever get tested.
Antibodies are produced by the immune system to protect against foreign substances, but some types — known as IgE, for immunoglobulin E — can do more harm than good, triggering intense allergic reactions.
Not everyone who tests positive for IgE antibodies to alpha-gal will have a noticeable reaction to steak or pork. Antibody levels — and the allergic response — usually wane over time. But if someone keeps getting tick bites, the ensuing allergic eruption can be more severe.
One of the biggest questions for allergists is whether high levels of those antibodies can be associated with other health risks. A few researchers have found an association between alpha-gal antibodies and coronary artery disease. One researcher hypothesized that for people with the antibodies, eating mammalian meat can lead to chronic inflammation inside arteries, even if it doesn’t lead to hives or vomiting in the hours after a meal.
“That’s sort of an elephant in the room for me,” said Dr. Jeffrey M. Wilson, an alpha-gal expert at the University of Virginia School of Medicine, who has explored the potential link to heart disease. “If somebody makes alpha-gal antibodies,” even if they have never had a bad reaction, “should we be talking about dietary modification?” he asks.
Virginia is one of more than a dozen states that track positive alpha-gal blood tests. Between the start of tracking in September and early March, 8,482 Virginians had positive alpha-gal tests, according to the Virginia Department of Health. That averages to about 50 a day.
Kentucky, with about half the population of Virginia, has logged about 30 suspected cases a day. Since May, the health authorities have learned of 8,864 Kentucky residents who tested positive.
In New York, the state health authorities do not track cases. But New York City’s Health Department does, although the lone star tick has only a minor presence in the city. The Health Department knows of 280 suspected cases since 2024.
It’s a different story on Long Island. In Suffolk County, between 3,800 and 18,000 people had alpha-gal from 2010 to 2022, based on C.D.C. estimates. That corresponds to as much as 1.2 percent of the population.
In some pockets, that is probably an undercount. On one L-shaped block in suburban Farmingville, full of swimming pools and encroaching deer, three neighbors said they have alpha-gal syndrome, all diagnosed within the last two years.
The syndrome has caused stomach issues severe enough that Jill Elberfeld, 57, waits until she’s back home at the end of the day before eating. Two doors down is Lenor Capria, 59, an avid hiker who pulls five or six ticks from herself most years. Alpha-gal has left her allergic to dairy. Matt Scarallo, 33, lives six houses in the other direction and sometimes struggles to breathe after eating red meat. These days, he dines on ostrich and duck, which he buys from a specialty supplier that is popular among alpha-gal patients.
The case of a photographer in Sag Harbor on Long Island illustrates the varied ways an alpha-gal reaction can be triggered.
Dana Casale healed more slowly than expected after a difficult childbirth, leaving her doctors bewildered. She suspects that was because of the sutures that were used to repair internal tearing and stop the bleeding after delivery. They were made from cow or sheep intestine and are among the medical interventions thought to potentially pose a problem for alpha-gal patients.
Experts say another potential trigger for alpha-gal patients could be the blood thinner heparin, which is administered in high doses during cardiac procedures to prevent clotting and is typically derived from pig intestines. Researchers say this might explain why people with alpha-gal syndrome experience a higher incidence of allergic reactions during heart surgery.
Whether alpha-gal syndrome caused the death of a 70-year-old Kansas woman after heart surgery is the subject of debate among doctors.
When Mindy Dyke, a retired teacher in McLouth, Kan. — population 864 — needed a heart valve replaced, her surgeon tried to limit any allergic reaction. Ms. Dyke had been diagnosed with alpha-gal syndrome in 2024.
Ms. Dyke, who often veered off trails while searching for morel mushrooms, figured she got the tick bite while mushroom hunting, or perhaps on a trip to view the solar eclipse, her daughter, Dessa Crum, recalled.
Since her diagnosis, Ms. Dyke had already endured worrisome reactions. Often, surgeons use heart tissue from a cow or pig when replacing a heart valve. But because of Ms. Dyke’s alpha-gal diagnosis, her cardiothoracic surgeon picked a replacement valve from a deceased human donor, rather than animal tissue, her daughter said.
Ms. Dyke’s blood pressure dropped in the hours after the Dec. 2 surgery, Ms. Crum recalled. Her heart stopped that night.
The death certificate lists anaphylactic shock and alpha-gal syndrome among the causes of death. Her reaction may have been triggered by a medication or medical device, according to what the woman’s doctor told her family.
But the Kansas Health Department informed the family that it lacked sufficient evidence to conclude that the death was attributable to alpha-gal syndrome.
Until the JetBlue pilot’s death in New Jersey, the only documented alpha-gal deaths stemmed from cetuximab, the cancer drug.
But a lawsuit in Kentucky raises the possibility that red meat triggered an earlier alpha-gal death in the United States.
George Mattingly, a pressman in a packaging factory, would sometimes wake after midnight, his face beet red, and collapse on his way to the bathroom, his wife, Christie Mattingly, recalled. After one episode in September 2023, he was brought to a hospital.
His family suspected heart problems, but the emergency room doctor tested for alpha-gal, according to a lawsuit Mrs. Mattingly later filed.
A few days after his hospitalization, Mr. Mattingly, 36, made ground beef tacos for dinner. He died later that night.
His alpha-gal test had come back positive in the meantime, the lawsuit asserts. But the hospital never informed Mr. Mattingly, according to the suit.
The hospital declined to comment, citing the litigation.
Alpha-gal is on the rise in Kentucky. Mrs. Mattingly, a nurse, noted that some of her husband’s friends would complain of stomach ailments, but blamed food poisoning or stress.
A few got tested after Mr. Mattingly died, she recalled, including his best friend — one of his pallbearers.
“He found out he had alpha-gal,” his widow said.
Kirsten Noyes contributed research.
Joseph Goldstein covers health care in New York for The Times, following years of criminal justice and police reporting.
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