Imagine a bite of a familiar food that you’ve enjoyed your whole life suddenly becoming a medical emergency. This isn’t science fiction — it’s a fast-growing food allergy that you’ve likely never heard of. One tiny bug bite can unleash an allergy you never knew existed, requiring you to redefine your relationship with food, cosmetics, medications and more.
The tick bite that redefines your diet
With one bite, the lone star tick injects a sugar molecule known as alpha-gal into your bloodstream. While harmless to most, some people develop an immune response to alpha-gal, which leads to a condition known as alpha-gal syndrome (AGS).
Although primarily found in the southeastern, south-central and mid-Atlantic states, the University of Rhode Island’s TickEncounter reports that lone star ticks have been seen as far west as Colorado and Wyoming and as far north as Maine. As the lone star tick expands its range across the US, cases of AGS are also on the rise.
Marilyn Paquet is a business analyst in Franklin, Virginia, about an hour west of Norfolk. Over Labor Day weekend in 2017, more than 100 larval lone star ticks bit her while she was camping. “Several weeks later, in October, I had my first reaction after eating beef tacos for dinner,” Paquet explained. “My palms got bright red, slightly swollen, incredibly itchy, and felt like I’d just placed them on a hot stove. Next came excruciating abdominal pain followed by hives all over my body.”
What is alpha-gal syndrome?
Also known as alpha-gal allergy, red meat allergy or tick bite meat allergy, the symptoms of AGS are wide-ranging and vary from person to person. The Centers for Disease Control and Prevention (CDC) shares that people affected by AGS can experience mild to life-threatening reactions that range from an itchy rash to severe abdominal pain to anaphylactic shock. Symptoms often don’t appear until hours later and can vary from person to person, fueling the mystery and challenges of diagnosing and managing this tick-borne food allergy. It can affect anyone, regardless of age — both adults and children.
Between 2010 and 2022, the U.S. saw 110,000 suspected cases of alpha-gal syndrome. However, the CDC believes many more cases were likely undiagnosed and/or unreported — partly due to a lack of understanding and awareness of AGS among healthcare professionals — and that up to 450,000 people might have been affected by AGS since 2010. A survey conducted by the CDC revealed that 42% of healthcare providers had never heard of AGS. Of those who recognized the condition, less than one-third knew how to diagnose it.
After eating a pastrami sandwich, Paquet had another reaction that mirrored the first. “My boyfriend mentioned he recently read a news report about a girl a tick had bitten and that she could no longer consume mammalian products. I thought he was joking, but when I searched online, I discovered alpha-gal syndrome.”
Unfortunately, it wasn’t so easy for Paquet to get a blood test to confirm her suspicion. “After a few doctors thought I was crazy, I found a fantastic allergist who knew about alpha-gal. A blood test quickly confirmed I could no longer eat beef, bacon or any other mammalian meat I’d previously enjoyed my whole life.”
The hidden impact of alpha-gal syndrome
An AGS diagnosis goes far beyond revamping your dinner menu. Everyday products, from your favorite moisturizer to over-the-counter pain relievers, can harbor hidden ingredients that trigger allergic reactions.
Following an alpha-gal diet
Living with AGS isn’t just skipping steak dinners or avoiding a hot dog at the ballpark. Instead, avoiding red meat is “just the beginning,” according to allergist and immunologist Scott P. Commins, MD, PhD. That’s because mammalian byproducts are present in an overwhelming number of foods, personal care items and medical products. For example, gelatin — typically derived from cows or pigs — is commonly found in marshmallows, candy and some medications. Additionally, many packaged foods, from cereal to vegetable juice, include an ingredient labeled as natural flavoring that can be mammal-based.
While it’s relatively easy to pronounce ingredients like gelatin and natural flavoring and identify them on food packaging, mammalian byproducts are numerous and may have obscure names like anthropodeoxycholic acid and glyceryl tristearate. Complicating things further, there isn’t a single official list of mammalian byproducts.
Hidden dangers in cosmetics
For people living with AGS, personal care products can present unexpected challenges. Many cosmetics and personal care items — including lotions, creams and makeup — contain hidden mammalian byproducts, like gelatin or glycerin. They can pose a risk to people with alpha-gal. While some companies offer plant-based products, a lack of federal regulation in the U.S. means that manufacturers may use terms like plant-based and vegan as they like. This can make it difficult for alpha-gals to make safe choices.
Jenny Keller is a first-grade teacher in Boonville, Missouri, about 100 miles east of Kansas City. She believes she had AGS for 12 years before being officially diagnosed in March 2022. In addition to following a very strict alpha-gal diet, she must also be mindful of the health, hygiene and beauty products she uses. “I have to use vegan toilet paper, laundry detergent, body wash, toothpaste and deodorant,” said Keller, “or else I experience severe inflammation, hives and itching. Same for my shampoo, conditioner and make-up.”
Navigating medical treatments with AGS
An alpha-gal diagnosis also significantly impacts medication and medical treatments. According to Alpha-Gal Information, more than 20,000 drugs, vaccines and medical products contain mammalian byproducts. This makes everything from over-the-counter options for a headache or common cold to prescription medications and anesthesia used during surgery more complicated for people with AGS. And because the medical community doesn’t widely understand the condition, many alpha-gal patients have difficulty working with their insurance company to identify and receive equal coverage for safe alternatives.
Due to alpha-gal, Paquet cannot take the heart medication her physician prescribed. “Not only does it come in a gel capsule derived from cows, but it includes several other inactive ingredients that are also derived from mammals.” She continued, “My only option is to work with a compound pharmacy that puts the same active ingredients in a veggie cap, but insurance companies don’t cover compound medications, so I have to pay $200 per month for medication that is otherwise covered with a modest co-pay.”
To avoid contracting alpha-gal syndrome
To avoid developing alpha-gal syndrome or worsening any existing symptoms, you must minimize your exposure to ticks. Wear long-sleeved shirts and pants when you are in wooded or grassy areas. Wear permethrin-treated clothing and insect repellents with DEET, and conduct a tick check of your body, clothing and pets when coming in from the outdoors.
Moving forward with alpha-gal syndrome
If you suspect you or someone you love has alpha-gal syndrome, request an alpha-gal IgE test. This is a blood test that checks for a special kind of antibody associated with allergies called immunoglobulin E. It will easily confirm or deny your suspicions.
Alpha-gal syndrome can be a life-altering diagnosis, demanding vigilance and a complete overhaul of your daily routine. But with knowledge comes empowerment. By understanding the hidden dangers and advocating for yourself, you can navigate life with AGS and still enjoy the things you love. While AGS may redefine your relationship with food and products, it doesn’t have to define you.
Disclaimer: These statements have not been evaluated by the Food and Drug Administration. The contents of this article are for informational purposes only and do not constitute medical advice. The content presented here is not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of a qualified healthcare provider with any questions you may have regarding a medical condition or dietary changes. Reliance on any information provided by this article is solely at your own risk.
Sage Scott was diagnosed with alpha-gal syndrome in March 2021. She is the creator of Sage Alpha Gal, a resource for the growing alpha-gal community offering alpha-gal-friendly recipes, helpful tips and a supportive space to navigate life with AGS.