- A new autopsy just confirmed the first U.S. death from tick-borne alpha-gal syndrome.
- Alpha-gal syndrome causes delayed allergic reactions to mammal meat, dairy and some medicines after tick bites.
- Symptoms can lessen with strict diet changes; experts urge testing for those with unexplained post-meat illness.
This week, the cause of a 47-year-old airline pilot’s death, which was once a mystery, was revealed. The autopsy results were published in The Journal of Allergy and Clinical Immunology, and they indicated that the New Jersey man had died from alpha-gal syndrome, a meat allergy developed by a tick bite.
This is the first reported death from this underrepresented yet serious allergy. Alpha-gal syndrome (AGS) occurs when a tick (typically a lone star tick) transfers alpha-gal from its saliva into a person’s blood. This transfer causes the body’s immune system to react and trigger an allergy to meat and other animal products.
The CDC recommends that those with AGS stop eating red meat—including beef, pork, lamb, venison or rabbit—and in some cases dairy products and certain medicines depending on tolerance. While the U.S. Centers for Disease Control and Prevention (CDC) suggests that there’s 450,000 people with the condition, the exact number is unclear due to it being difficult to diagnose. Telaina Panzenhagen is one of thousands with AGS, and she explains that it took months for symptoms to start—and weeks after that for her diagnosis to be official.
“While I don’t know for sure which tick caused my alpha-gal syndrome, I suspect it was about three months before I developed symptoms,” Panzenhagen tells EatingWell. “We have horses and dogs, so we spend time outside, and generally I have at least one tick per year, sometimes several. I am one of the fortunate few who knew what alpha-gal was before I acquired it.”
She shares that one of her good friends has AGS, so when she started noticing the gruesome symptoms of the syndrome, it quickly became clear on what was going on.
“About three years ago, I went to lunch with friends,” Panzenhagen remembers. “We ate BBQ, and I was fine until about five hours later. I very quickly went from fine to the most excruciating abdominal pain I have ever experienced. I thought it was food poisoning. I hurt for about eight hours. I was exhausted and very foggy-headed for two days.”
Once her pain settled, she didn’t think much of it besides it being a terrible bug or foodborne illness. Her story is similar to the recent report of the man who died from the condition; his family reports that he started experiencing stomach pain, diarrhea and vomiting after eating a beef steak. And like Panzenhagen’s case, it was let go until the next occurrence.
She shares that one of her good friends has AGS, so when she started noticing the gruesome symptoms of the syndrome, it quickly became clear on what was going on.
“About three years ago, I went to lunch with friends,” Panzenhagen remembers. “We ate BBQ, and I was fine until about five hours later. I very quickly went from fine to the most excruciating abdominal pain I have ever experienced. I thought it was food poisoning. I hurt for about eight hours. I was exhausted and very foggy-headed for two days.”
Once her pain settled, she didn’t think much of it besides it being a terrible bug or foodborne illness. This is synonymous to the recent report of the man who died from the condition; his family reports that he started experiencing stomach pain, diarrhea and vomiting after eating a beef steak. And like Panzenhagen’s case, it was let go until the next occurrence.
“Two days later, I ate tacos made at home. Once again, I had severe abdominal pain about five hours later,” she says. “I immediately wondered if it was alpha-gal. I went to urgent care to be tested. Unfortunately, the test takes two weeks to come back, but in that time, I started watching everything I ate. The closer I paid attention, the more issues I found.”
Panzenhagen noticed her body was negatively reacting to some of the foods she incorporated in her everyday routine: “Milk in my coffee was a problem, vitamins in gel caps were a problem. I even had problems with high-histamine, non-mammal things like tomatoes. I couldn’t eat cheese or ice cream. I also had issues with anything that contains carrageenan. It was so depressing trying to find something to eat that didn’t make me sick.”
Just like any other allergic reaction, AGS varies by person, and it can improve when managed. But for the man in the recent study, the syndrome unfortunately took his life after the second time he ate meat.
“I do have to say that alpha-gal has been incredibly difficult, not just because eating feels like walking through a mine field,” Panzanhagen shares. “It is so different from person to person. Some people can eat dairy, but not mammal meat. Some people stop breathing or break out in hives. For me, people outside my family never see a reaction because of the delay. Some people act like I am making a big deal about nothing when I say I can’t eat specific things.”
Panzanhagen was able to find Facebook groups that helped her develop AGS-friendly meal plans and adjust her eating pattern while providing support and encouragement.
“I am very blessed to be married to a great cook who makes a point to cook alpha-gal-safe meals for me,” she shares. And fortunately, symptoms of AGS can lessen in severity over time, and this is true for Panzenhagen’s case.
“Today, after three years of eating very carefully, I find that I can ‘cheat’ in small ways,” she says. “I can eat fried chicken that has been rolled in milk, which I could not do in the beginning. I had one slice of pizza for the first time in three years, and I even had a bite of pie recently—most desserts are unsafe for me because they contain dairy.”
This condition unmanaged can be dangerous, so talk to a healthcare professional if you believe you or a loved one may have undiagnosed AGS.
