Meat Allergy? It's More Common Than You Think

Who would have imagined an all-time favorite meal could almost kill you? That is exactly what 14-year-old Kaitlyn Grzybowski experienced when she mysteriously developed the meat allergy or alpha-gal syndrome (AGS).

AGS describes the allergic reaction some people like Kaitlyn get after they eat red meat or are exposed to other products that contain the carbohydrate molecule alpha-gal, which is found in most mammals.  

AGS is a rare condition, says Dr. Elvin Mendez, a board-certified physician and Medical Director of Academics, Clinical Research and Precision Medicine at Lee Health.

“Alpha-gal syndrome is a serious, potentially life-threatening allergic reaction to mammalian meat such as beef, pork, lamb, venison, and rabbit,” Dr. Mendez says. “It is unique in that the symptoms may not appear until several hours after ingesting mammalian meat. An individual may experience hives and or swelling. However, there is a risk of a severe allergic reaction called anaphylaxis. Without urgent medical intervention, anaphylaxis can cause shock, cardiac or respiratory failure, and even death.”

AGS symptoms

Symptoms typically appear 2-6 hours after eating meat or dairy products or after exposure to products containing alpha-gal (for example, gelatin-coated medications).

AGS reactions can include:

• Hives or itchy rash
• Nausea or vomiting
• Heartburn or indigestion
• Diarrhea
• Cough, shortness of breath, or difficulty breathing
• Drop in blood pressure
• Swelling of the lips, throat, tongue, or eyelids
• Dizziness or faintness
• Severe stomach pain

[Source: Centers for Disease Control and Prevention (CDC)]

According to the CDC, AGS affects up to 8 percent of children and 2 percent of adults.

AGS and the ER

A year ago in June, Kaitlyn woke her mom one night because she wasn’t feeling well. For dinner, they had one of Kaitlyn’s favorite meals—cheeseburgers. She’d eaten them her whole life and always without any problem.

At the time, mom and daughter were visiting Maryland to finish treatment with Kaitlyn’s orthodontist. (The family relocated to Fort Myers in 2020.)

“Kaitlyn’s face and tongue were swollen,” Nicki Gotsis, Kaitlyn’s mom, recalls. “She said she felt ‘tingly’ and her throat was swelling, too. I rushed her to the local hospital. She was given Benadryl and steroids for the swelling, but when it didn’t go down, she was given epinephrine.”

Kaitlyn’s anaphylactic reaction kept her in the hospital for more than 12 hours.

“We thought maybe Kaitlyn’s new retainer had caused the reaction,” Nicki says. “But the allergist we saw suspected alpha-gal, a food allergy. I’d never heard of it. We’d know more when Kaitlyn’s blood tests came back.”

A walk in the woods

The week before her trip to the emergency room, Kaitlyn had visited her grandparents in mountainous West Virginia.

One day, after spending time in the woods, Kaitlyn came home with a tick on the back of her neck. She removed two other ticks as well.

“She didn’t show any symptoms from the tick bite, like swelling in the area,” Nicki says. “Because there weren’t any other reactions, we didn't think to get Kaitlyn tested. It seemed like a normal tick bite, possibly a dog tick or something that wouldn't cause any concern.”

Days later, the pair left West Virginia and headed to Maryland to see Kaitlyn’s orthodontist.

Lone Star Tick tics the box

After returning to Fort Myers after Kaitlyn’s medical scare in Maryland, Nicki received a call from the allergist confirming the diagnosis. Her daughter had acquired AGS from a tick bite. Nicki recalls the doctor’s only caution was that Kaitlyn must avoid eating ground beef.

Named for a single white dot, or “lone star” on its back, the Lone Star tick is found throughout the eastern, southeastern and south-central states, according to the CDC. In the past 20 years, the tick has spread west to central Texas and Oklahoma and as far north as Maine. And in larger numbers, too, a trend that concerns researchers because of the Lone Star tick’s aggressive nature.

The tick sucks blood from mammals whose meat contains alpha-gal carbohydrates. When it feeds on humans like Kaitlyn, the ticks cause the person to become sensitized to the carbohydrate alpha-gal.

Kaitlyn goes vegetarian

Following the doctor’s orders, Kaitlyn stopped eating meat, including her beloved cheeseburgers as well as pork. But even after eliminating meat from her diet, Kaitlyn was still showing symptoms of AGS.

“In November, we went vegan because Kaitlyn was still swelling every day,” her mom recalls. “We couldn't figure out why because we were doing what the doctor told us—no more eating beef and pork.”

However, the allergist had failed to warn them that AGS could also be caused by meat byproducts like cow’s milk and ingredients found in glycerin and gelatin. In Kaitlyn’s case, that meant she had to also avoid prescriptions and antibiotics made with glycerin and gelatin, both of which can come from mammalian products.

“As soon she went vegan, all the swelling disappeared, and she started feeling better,” Nicki says. “That’s when we learned the only way to keep Kaitlyn from having an allergic reaction was to avoid all foods and products containing alpha-gal.”

Not all people with AGS have reactions to every ingredient containing alpha-gal, according to Dr. Mendez.

“Depending on their sensitivity and the severity of their allergic reaction, they may not only have to avoid mammalian meat but also other foods and ingredients which may contain alpha-gal, such as cow’s milk, milk products, gelatin and glycerin,” he says.

As for Kaitlyn, she admits not having milk or cheese, in addition to beef, pork and lamb, stressed her out. The AGS was affecting her life in a big way.

“It was definitely a change,” she says. “Vegan food definitely isn’t as good as regular food, and it took a long time for me to get used to it.”

Nicki and Kaitlyn find an ally against AGS

At the request of her pediatrician, Nicki sought an allergist in Southwest Florida “well-versed in AGS,” she says. “I wanted to stay in the area by finding someone who could share with me the information I didn’t already know and be as proactive as I was about the disease.”

Mostly, she says, she needed an ally who could guide Kaitlyn and her in the right direction.

She contacted Dr. Mendez’s office and sent her daughter’s medical records.

“Dr. Mendez reviewed her complete file. All of it,” she says. “And when we sent to see him, he explained everything to us, how the testing works, what the reactions are, and told me new information I didn’t have about AGS. He was awesome.”

Getting the word out

Meanwhile, Nicki continues to try and educate the public about AGS, like the high school educators at the public high school where her daughter will attend this year. Previously, Kaitlyn had been home-schooled.

“I’m advocating for high schools and parents to become more aware of tick-borne illnesses, including AGS,” Nicki says. “Most people don’t know that meat allergies exist. And it can be difficult to associate allergies with some tick bites because of the time factor. For example, Kaitlyn ate beef products for days after she was bitten. We didn’t see the possible connection between a cheeseburger at dinner and an outbreak at midnight.”

Nicki hopes that the more people know about alpha-gal, the more likely they will try to prevent tick bites and get allergy tested.

Dying for a cheeseburger, literally

Kaitlyn’s blood tests indicate the number of alpha-gal antibodies in her bloodstream is decreasing, as is expected with some patients over time, Dr. Mendez says. Thank no more tick bites and staying faithful to a vegan diet for that morsel of good news.

She is slowly being reintroduced to by-products made from mammalian products. For now, it’s dairy products. But it’s a week-by-week process, according to Nicki.

If Kaitlyn continues toward a full recovery from AGS, cheeseburgers are the last food to try.

“She loves cheeseburgers, like, absolutely loves cheeseburgers,” Nicki says with a laugh. “If we were to tell Kaitlyn she could have a cheeseburger right now, she probably down one in two seconds. A few weeks ago, she told me she was dying for a cheeseburger. I said, you literally are. The funny thing is, as a little girl, she wouldn’t touch any kind of beef at all.”

How can you prevent AGS?

You can prevent tick-borne illness by avoiding tick habitats such as dense woods and brushy areas, using insect repellents that contain DEET or permethrin, wearing long pants and socks, and regularly checking yourself for ticks after outdoor activity. 

To learn more about how to prevent tick bites, remove ticks, and check symptoms, visit the CDC’s comprehensive site on ticks.