Akiko Iwasaki, 50, says she has been living with alpha-gal syndrome — a new allergy to red meat that can be triggered by a tick bite — for about two years. The allergic reaction shows up hours after someone eats red meat, which can make it difficult for doctors and patients to connect the foods with symptoms.
More than 34,000 cases have been documented in the U.S. alone, with experts warning the prevalence of alpha-gal syndrome is "drastically" increasing. Iwasaki, a professor of immunobiology at the Yale School of Medicine in New Haven, Connecticut, shared her experience with TODAY.
I’d never head of alpha-gal syndrome before I was affected in 2019 and I’d never had a reaction to red meat. I used to love eating steaks.
The first time I noticed something was wrong was when I was making a beef dish. I served it and everyone really enjoyed it. I enjoyed it, too, but that evening, I got really, really sick. Nobody else got sick. I kind of assigned it to something that I ate. Maybe something wasn't cooked enough. I dismissed it as a one-off thing.
Occasionally, I would make some beef or pork dish and then I would get really, really sick at night — mostly gastrointestinal tract issues. I never understood: Why is it that I'm the only one in the family? We eat the same food and usually for food poisoning, everyone gets sick, but I was the only one getting sick.
I never really pieced these things together until it happened multiple times and then I realized, oh my gosh, it may be the meat. I realized every time I eat red meat, I'm getting really sick at night. It's either when I’m close to bedtime or after dinner, so it it's usually three to six hours later that I get these terrible GI symptoms.
I started to search for different diseases that may be associated with that and then I came across alpha-gal.
We get exposed to a lot of ticks here in Connecticut and we have a dog, too, and that dog brings ticks.
Until I understood what the disease was, it was terrible because I was just basically exposing myself to meat and every time I would get really, really sick. Luckily, I don't have anaphylaxis, which would have been much more serious.
It has completely affected the way I cook. Obviously, I don't use any red meats anymore, but this means my family doesn’t get to eat steaks either.
Staying home is much easier because even if I get sick, I know what to do, I know what to expect. But if I'm traveling and it happens on the road, it's going to be really, really difficult for me to deal with it.
The other thing is eating out. It's been very difficult because even if I order a vegetarian dish or fish or something, the restaurants may use the same knife to cut something with meat and I cannot control that cross-contamination. Any trace amount may be enough for me to get a reaction.
So for me to eat out, it's a huge risk, especially if it's not a purely vegetarian restaurant. There's always that possibility of contamination. Sometimes, I'm just counting the hours after I eat out somewhere and thinking, please, please, please don't let this happen. After about six or seven hours, if I'm fine, then I should be OK.
Doctors can't really tell what's going to happen to an individual person with this disease. Some people have it for many years, others say it gradually went away, so I'm not sure exactly what to expect, but I'm certainly not taking any risks. I hope it gets better, but it hasn’t happened yet.
I tweeted about my experience because I thought maybe others are suffering the same way without knowing what's making them sick. Alpha-gal syndrome is not very well known — even some doctors who were responding to my tweets said they’d never heard of it. It's very important for all the doctors to know about this so they can be on the lookout for patients with severe reactions.
I want others to know that If you're going on a hike or going into the woods, definitely as much as possible protect yourself from ticks.
It’s important to talk about and get awareness of disease so that people don't unnecessarily suffer from it without knowing, like I did in the beginning.