Alpha-gal Syndrome: More Than a Red Meat Allergy
“Just don’t eat beef,” the nurse said confidently on the phone after delivering my positive alpha-gal diagnosis. Was this the only recommendation or plan I’d be given? What else did I need to know?
Fast forward five years, and I now know alpha-gal syndrome is far more complicated than simply avoiding beef. But not to worry, I’m here to share the knowledge I’ve gained, and the strides we’re making to ensure life with alpha-gal is easier for all.
What is Alpha-gal Syndrome?
Alpha-gal syndrome (AGS) is a tick-induced food allergy to galactose-ɑ-1,3-galactose, a sugar commonly known as alpha-gal that is found in all mammals (except humans and some primates). Following the bite of the Lone Star tick, a person can develop a potentially life-threatening allergy to anything containing the alpha-gal sugar, including beef, pork, and other red meats, as well as dairy and byproducts commonly found in foods, pharmaceuticals, and everyday household items.
My Story
For the 10 years leading up to my diagnosis, I experienced periods of extreme joint pain, fatigue, brain fog, and gastrointestinal upset. Repeatedly, my primary care physician would assess me and send me to a specialist who, without fail, would diagnose me as fine. But I knew I was unwell. I continued to pursue my symptoms, even following the recommendation of a GI doctor to surgically remove my gallbladder, without relief. In 2019, I finally received my AGS diagnosis.
The nurse who advised me to avoid beef was (partially) correct. Strict avoidance through diet and lifestyle is the only option for those living with AGS. But beef is only a starting point. In addition to the obvious culprits—such as steak, bacon, and cheese—avoiding mammal-derived products can be difficult. Alpha-gal is pervasive in food in the form of obscurely-named additives such as gelatin, glycerin, pepsin, or rennet. Many ingredients can be either animal- or plant-derived without designation. The lack of transparency in labeling makes identification of mammal-derived sources in foods, medications, vaccines, and more an impossible challenge.
But Isn’t AGS Rare?
No! AGS is an emerging epidemic. In July 2023, the Centers for Disease Control estimated as many as 450,000 cases in the U.S., identifying AGS as a public health crisis and naming alpha-gal the 10th most common food allergy. Symptoms of a reaction include hives and swelling, gastrointestinal issues, and respiratory distress. As many as 75 percent of alpha-gal patients report experiencing anaphylaxis due to exposure.
The Alpha-gal Allergen Inclusion Act
The Federal Food, Drug, and Cosmetic Act requires labeling of the top nine allergens, but that doesn’t help those of us with AGS. A trip to the grocery store can feel like a dangerous guessing game. Considering the severity of AGS and the uptick in cases, a solution is critical.
After hearing a constituent’s alpha-gal journey, Congressman Jeff Van Drew (R, NJ) identified the need to help. In August 2024, he introduced H.R. 9382, the Alpha-gal Allergen Inclusion Act (AGAIA). This bill would amend the Federal Food, Drug, and Cosmetic Act to add alpha-gal to the definition of a “major food allergen.” If enacted, the bill would require labeling of alpha-gal on packaged foods sold in the U.S. in the same way other top allergens are currently labeled.
How Can the Food Allergy Community Help?
This legislation will greatly help the alpha-gal community identify unsafe foods, but bills take time and effort to reach the finish line. That’s why we need your support! Our friends at Alpha-gal Alliance Action Fund have created a simple, one-minute form to personally urge your member of the U.S. House of Representatives to co-sponsor the bill.
At the Alpha-gal Foundation and Two Alpha Gals, we’re building a community of allies, advocates, and experts committed to working to make the world safer for those living with AGS. Passing the AGAIA will be an enormous step in the right direction!
— Debbie Nichols
Debbie Nichols and Candice Matthis started blogging as Two Alpha Gals after they were both diagnosed with alpha-gal syndrome in 2019. Since then, they’ve been sharing tips and tricks for navigating life while living with the condition. The Gals host a popular podcast, In the Tall Grass, and offer support for those living with alpha-gal syndrome, including resource guides, workshops, and a food allergy mentorship program.
Debbie and Candice launched the Alpha-Gal Foundation in 2024 with a mission to foster community, empower patients, and educate the world about AGS.
With appearances in NBC News, The Today Show, NPR, and The Atlantic, Candice and Debbie continue to raise awareness of what it’s like to live with AGS without sacrificing joy. Both women live with their families in the New River Valley of Virginia, where they happily practice tick bite prevention to enjoy the beautiful outdoors.