by Peyton Owen
Commonly referred to as “the red meat allergy,” alpha-gal syndrome is an allergic condition caused by a tick bite. This bite causes an oftentimes severe allergy to the carbohydrate molecule galactose-alpha-1, 3-galactose, which is found in all mammalian products, and a red algae derivative called carrageenan. The lone star tick is the most well-known cause of AGS, but studies suggest that other types of ticks can also transmit this allergy. AGS is caused when a tick bites a human and injects the alpha-gal sugar molecule into the person’s skin. The exposure to the sugar triggers the person’s immune system to create IgE (allergy) antibodies to the molecule, thus rendering the person allergic to all mammalian products—beef, pork and lamb as well as dairy products and tallow.
Some individuals may be more reactive to certain products than others. Meat, fats and organs for mammals contain the highest concentration of the alpha-gal sugar, and therefore, most people who have AGS react to these. Dairy is on the next tier, with full-fat products carrying the highest risk. More people with AGS are able to tolerate gelatin.
The general medical advice, though, is, if you have AGS, treat anything containing the alpha-gal sugar with caution. And always carry epinephrine. It is usually when people let their guard down that we see sad stories play out.
Those who reside in the Southeastern United States and spend a significant amount of time outdoors are at the highest risk for AGS. Members of the military, hunters, hikers, farmers and foresters are all at high risk. Additionally, multiple tick bites can make people more susceptible to a severe reaction.
AGS often takes a long time to diagnose—the average wait time is seven years. According to a Centers for Disease Control and Prevention study, 78 percent of medical providers in the United States have little to no knowledge of AGS. To make matters worse, there are several factors associated with AGS that make it difficult to diagnose, even when a provider knows what to look for. AGS-triggered allergic reactions are typically delayed two to eight hours after exposure to the allergen, making it difficult to pinpoint the culprit. Additionally, reactions do not always involve the hallmark symptoms of anaphylaxis, such as hives and airway swelling. In fact, 20 percent of cases present with gastrointestinal symptoms alone, such as nausea, abdominal pain and diarrhea.
Recently, the mainstream media has reported of the “first” death due to AGS. In September 2024, Brian Waitzel, a 47-year-old New Jersey man, passed away from anaphylaxis hours after eating a hamburger. While he had heard of AGS, he had no idea that he had the allergy himself, further emphasizing the point that knowledge saves lives. Unfortunately, Waitzel’s death was not actually the first caused by AGS. There have been 14 documented deaths due to AGS after infusions of the drug cetuximab—a cancer treatment drug that is produced in a mammalian cell culture and which sparked the discovery of AGS—and over 20 deaths total, worldwide.
The CDC estimates that there are 450,000 Americans living with AGS, although they acknowledge that this number is likely grossly underestimated due to a lack of diagnosis and reporting of the condition. Although it is likely a low estimate, this number would still make alpha-gal the 10th most common allergen in the United States. And with over 60 percent of AGS patients experiencing anaphylaxis with their reactions, AGS is the number one cause of anaphylaxis in adults and adolescents in high-prevalence areas such as Tennessee. It is estimated that up to 10 percent of Tennesseans (700,000 people) are sensitized to alpha-gal, meaning they have been bitten by a tick carrying the alpha-gal molecule and have developed IgE antibodies, and that as many as 10 percent of those people have the full-blown allergy to alpha-gal (35,000–75,000 people). This means that likely you or someone you love has AGS or is sensitized to alpha-gal.
In March of this year, Tennessee Governor Bill Lee signed bills HB 383 and SB 744 into law. Introduced by Representative Ed Butler and Senator Ken Yager, these bills added AGS to the list of diseases that are mandatory to report in the state of Tennessee. We are one of 11 states to pass such legislation so far. Bills like these are essential to obtaining better data on AGS and educating medical providers in the process.
In February of this year, U.S. Representative Jeff Van Drew of New Jersey introduced the bill HR 1178 (formerly HR 9382, introduced in August 2024), also known as the Alpha-gal Allergen Inclusion Act, to the U.S. House of Representatives. It is a bipartisan bill—after all, ticks do not discriminate based on political affiliation—that has the support of 32 co-sponsors. AGS advocates are currently asking senators to introduce it to the Senate as well; Senators Marsha Blackburn and Bill Hagerty would be prime candidates to do this because they represent Tennessee, a state with a high prevalence of AGS. This bill would require alpha-gal, as the 10th most common allergen, to be disclosed on the labels of packaged foods. Currently, only the top nine allergens are required to be labeled. Since the only way to manage AGS is avoidance of food and products that contain the alpha-gal allergen, adequate labeling is essential.
Alpha-gal shows up in the most unexpected places—lard can be used as a defoaming agent in maple syrup; bottled water is sometimes filtered through bone char; and “natural flavors” are sometimes made with mammalian extracts or byproducts. Clear labeling would help prevent accidental exposure to alpha-gal and would save lives.
Contact your congressional representative and senators to let them know your thoughts on this legislation. The Alpha-gal Alliance Action Fund website contains resources to help you do this. As more people die of AGS-related allergic reactions, we are in a race against time to make Tennessee and the world safer for the hundreds of thousands of people living with alpha-gal syndrome.
___
Peyton Owen serves as a member of the Food Allergy Research and Education Teen Advisory Group, and is a contributor for Two Alpha Gals and a council member for the Alpha-gal Alliance Action Fund Patient Advisory Council. She was diagnosed with alpha-gal syndrome in 2022, which rendered her allergic to any mammalian product.
[Top: Lone star tick photo courtesy Centers for Disease Control and Prevention]
