Sharon Forsyth, a Philadelphia native, was hiking through a peaceful field in Northern Virginia, on a hunt for rare butterflies — unaware of the small and potentially life-threatening dangers lurking in the grass.
It was pre-pandemic in 2019. Forsyth wore flip flops and shorts. She was with her friend, an ornithologist, who had on permethrin-treated long sleeves and long pants.
“He’s a very cautious person,” Forsyth explained. “He said to me, ‘You better be careful, because you’re going to get a tick-borne disease or that meat allergy.’ ”
“Meat allergy?” Forsyth thought. She didn’t know what he was talking about. Even after her friend explained all about alpha-gal syndrome — the tick-borne allergy that causes a potentially fatal reaction to red meat and sometimes dairy — it sounded unbelievable.
Within a month, however, Forsyth would not only be a believer, she would be a patient.
“I was bitten by a series of ticks,” she said. “I think it was five ticks over two weeks.”
What is alpha-gal?
Alpha-gal syndrome happens after a tick — often a lone star tick — transfers allergy antibodies from a cow or other mammal to a person through its saliva. It causes a delayed allergic reaction to a sugar molecule that is found in mammals — making red meat like beef, pork and lamb, and sometimes dairy, dangerous to consume.
Last month, the University of Virginia School of Medicine published research in the Journal of Allergy and Clinical Immunology reporting the first documented death from alpha-gal syndrome. The man was 47 years old, an airplane pilot from New Jersey.
“The issue with alpha-gal is that it’s probably underdiagnosed,” said Purvi Parikh, an allergist and immunologist with the Allergy and Asthma Network. “As a result of it being underdiagnosed and underreported, there may be more deaths that we don’t even know about, because that connection hasn’t been made.”
In part due to warming regional temperatures, lone star ticks have begun spreading into the Northeast. Alpha-gal syndrome can be tricky to diagnose, in part because the anaphylactic reactions occur hours after red meat was consumed and also because the symptoms don’t always feel intuitive for an allergy.
In Forsyth’s case, her symptoms began around two weeks after the bites. A few hours after eating a hamburger, her stomach started feeling as though a belt was being wrapped around it.
“It was just being squeezed,” Forsyth said. “It was like this really bizarre tightness and swelling. And I thought, OK, that’s weird. But then the palms of my hands began to swell, and the soles of my feet.”
“I was lucky enough — unlike many people with alpha-gal syndrome — to have hives and swelling,” she added. Unlike many alpha-gal patients, who only have gastrointestinal (GI) symptoms, this clued in Forsyth that she was indeed having an allergic reaction.
Heidi Dreiske Arnold, 51, lives in Ridley Township. Even though alpha-gal syndrome is often talked about as “new,” she said that she began having symptoms as a teenager around 1988 — when a “horrible” itchy and scaly rash began appearing on her hands. As a kid, she had to deal with teasing, and felt self-conscious over the appearance of her skin.
“It got diagnosed as both eczema or psoriasis by different doctors over time,” she said. “Sometimes it would get better or worse. Sometimes there’d be hives on me.”
“I never really identified them as being related to an allergy, until recently,” Arnold said. “Fast forward to 2005, I’ve been living out here in Philadelphia all my adult life. I had my second child as an infant who was [diagnosed as] failure to thrive.”
The boy wasn’t gaining weight properly, so doctors conducted allergy tests and found a red meat allergy.
Arnold was told to avoid red meat while she was nursing. The results were immediate. The itchy rash that had plagued her for decades went away. She decided to do a patch test on her own skin, putting a little bit of overcooked hamburger on her hand covered up by a big bandage.
“It started itching in minutes,” Arnold said. “It was burning in hours, and I could not stand to leave it on any longer. I pulled it off within 24 hours, and it had blistered a hole down into my skin. So I’m like, ‘What do you know? I must be allergic to beef too.’ ”
In addition to being underdiagnosed, not every medical professional is necessarily aware that alpha-gal syndrome exists.
“It’s not something that’s regularly taught in med school,” Parikh said.
According to the CDC, there is no clear number for how many alpha-gal cases are in the United States, but the organization estimates that as many as 450,000 people could be affected.
Dining out with alpha-gal syndrome
A sudden allergy to red meat will heavily influence how people dine out — and beyond what they may expect. Forsyth currently lives in D.C. She said that she was never a big red meat eater and her husband often ate vegan, so at first her new allergy didn’t seem like a huge problem.
“When I was first diagnosed, I thought, ‘Oh, I can’t eat red meat. Big deal. I couldn’t care less,’ “ she said.
However, because the allergy can be triggered by cross-contamination (think a shared stove, spatula or pan) it has ended up completely changing the way she dines out. In fact, the allergy has affected her so much that she is now executive director of the Alpha-Gal Alliance and Alpha-Gal Alliance Action Fund.
“It doesn’t matter how accommodating they are at a restaurant, in many ways, because unlike all other allergens, which are to proteins, alpha-gal syndrome is an allergy to sugar,” she said. “And that sugar is attached to both proteins and fats, and the primary antigenic form of the allergen is actually fat.”
“They clean the pans, but they don’t really get all the fat out,” she added. “So eating out when I was at my most sensitive was virtually impossible. I mean, I would react virtually every time.”
She also said that because fat melts during the cooking process, bio-aerosoles can be a big problem in the kitchen.
“A lot of people eat at vegan restaurants, sushi restaurants,” she said, because they are some of the only safe spaces.
Arnold also has had a lot of trouble avoiding cross-contamination.
“I’ve been restricting for over 20 years, and I still can’t hit it perfectly,” she said. “It’s so complicated to explain to somebody else. We use a lot of vegan products for safety, because, God bless them, they have done so much to create a lot of products to look into the processing methods, things that you might think are vegan.”
Still, Forsyth said that there are restaurants that care and do listen.
“Sometimes a restaurant gets it right,” she said. “One of my best experiences was ironically at a steakhouse. They were just so nice, and, you know, they wrapped my fish in aluminum foil or whatever, so it wouldn’t get any exposure. So, you just never know.”
Restaurants and alpha-gal menus
Erika Flerlage, general manager at the Good King Tavern in Bella Vista, said that the restaurant is very aware of alpha-gal syndrome because owner Bernard Grigri’s wife, Jeane, has it.
The Grigris live in the Winona area in New Jersey. Jeane was bitten sometime early in the pandemic. As a result, the French restaurant has become more sensitive and aware of the allergy, while still including a burger and steak on the menu.
“We know that cross-contamination can be a serious issue with this,” Flerlage said. “So we follow all of our regular guidelines, like we would with any other serious allergy to make sure that there’s no chance of cross contamination with any animal protein that could make a person with alpha-gal sick.”
Billy Penn reached out to a variety of Philly restaurants to inquire about alpha-gal allergies. While some said they could cater to it, many had not heard of the allergy.
“I’m surprised that you aren’t getting more feedback from folks on this,” Flerlage said. “[It’s] not as prominent as something like a celiac allergy or a dairy allergy or sensitivity, but significant enough to notice a trend.”
Arnold hopes that awareness spreads, and that more people treat alpha-gal seriously.
“I have had two different occasions — one a friend, one a family — the person tried to test it and prove I was wrong and slipped beef into my food,” she said.
In certain states farther south in the country, including Missouri, Virginia and Arkansas, awareness is prominent enough that restaurants have begun creating alpha-gal menus in the same way there are currently celiac or vegan menus.
“Many restaurants have alpha-gal-friendly menus,” Forsyth said, “but some have gone completely alpha-gal free. So many people have alpha-gal syndrome in parts of the country. A lot of chefs have it.”
Alpha-gal menus could potentially crop up at Philly dining spots in the future. If you have the allergy and want to eat out, Flerlage has these tips.
“Make your server aware as soon as possible, so that the kitchen can make sure that they’re taking every necessary step to ensure your safety throughout the preparation process,” she said. “That’s going to be the most important thing to do.”
How concerned should you be?
While alpha-gal cases have risen in the Philadelphia area in the last decade, Parikh said that the allergy is “still pretty rare” and that people can do a lot to protect themselves.
Preventing tick bites is the best defense against alpha-gal. If you plan on going hiking, try to wear long sleeves and pants, and treat your clothing with an insecticide or insect repellent like permethrin. When possible, avoid areas with high grass and brush.
If you are experiencing GI distress, dizziness, rashes or other anaphylactic symptoms three or more hours after eating red meat, speak to your medical doctor so they can order the appropriate testing.
“People don’t have to stop hiking or be fearful,” Parikh said. “Protect yourself and then if you get these symptoms and you’re a hiker, it’s something to bring up with your doctor.”
It’s also important to note that many medical drugs have mammalian products in them, including certain drugs, vaccines and even anesthesias.
Arnold has experienced anaphylactic symptoms, even after she communicated her allergy to doctors. Often, she said, she knows more about alpha-gal syndrome than the medical professionals who are treating her.
“I have had anaphylactic symptoms twice about a year ago,” she said. “One from a flu shot. One from a pharmacist who is trying to keep me safe. They tried to fit my allergy, they just made a mistake.”
As someone who’s dealt with symptoms for decades, she’s had multiple nurses and doctors not believe her allergy and as a result she has become extra cautious in doctors’ offices.
“I literally wrote on my arms, ‘alpha-gal allergy, no mammal products’ in ink on both arms, so every practitioner who touched me would see it,” she said. “Even though it’s embarrassing, I wanted to be the topic of conversation because that made me safer.”
Those curious to learn more can head to the Alpha-Gal Information web site or check out the Alpha-Gal Alliance Action Fund.
“If you do have this, you have to take it as seriously as any food allergy,” Parikh said. “If you’re someone who’s been newly diagnosed with this, it’s in your best interest to make sure that you see an allergist, make sure your asthma is well controlled, you have the emergency medication with you, and have an action plan in case you accidentally become exposed.”
Arnold hopes awareness about alpha-gal syndrome continues to spread.
“I want people to be aware of it,” she said. “That it is a possible diagnosis, that it is a real diagnosis, that people have a variety of experiences with it, so not just the patients can find out about it and get tested and know that they have it, but the medical professionals will understand it accurately and suggest the testing and guide people to safe conditions.”
Right now there is alpha-gal allergen inclusion act legislation in the U.S. Congress, which would amend the Federal Food, Drug, and Cosmetic Act so that alpha-gal is added to the federal definition of major food allergens.
“This would be a completely life-altering thing, and alpha-gal is the 10th most common food allergen,” Forsyth said. “There’s currently nine food allergens that are considered major food allergens. So we think the time based on the severity of our reactions and how prevalent alpha-gal syndrome is … We’ve got to get that bill passed.”
