Jessica Overcast lives with her family in the small Douglas County town of Ava in rural southern Missouri.
She vividly remembers her first trip to the grocery store after learning that her daughter, Lyla, has alpha-gal syndrome — a tickborne condition that can cause allergic reactions to alpha-galactose, a sugar molecule most commonly found in red meats and other products derived from mammals.
“I just, I sat there with this app that they said to use to figure out what she could eat, and I cried in the aisleway,” Overcast said. “I don't know what to feed my kid anymore.”
And she said it wasn’t even just about figuring out what foods to avoid.
“It was medication, it was lotions, it was soaps,” Overcast recalled. “Because she was still having reactions initially, and we couldn't figure out why — and it was her hand soap.”
Alpha-gal syndrome can be a challenging condition to manage because every person’s reaction is highly individualized. The types of allergic reactions range from gastrointestinal distress to hives to anaphylaxis — and what people have reactions to also varies.
Some people have reactions only when they eat actual red meats and others have reactions when they eat dairy, gelatin or other products derived from mammals. Some people even report reacting to airborne alpha-gal molecules in fumes.
Many in the alpha-gal community talk about the “hidden” sources of alpha-gal in foods. This includes gelatin, which comes from the skin and bones of mammals, as well as “natural flavors,” a vague term for substances that aren’t specifically defined or highly regulated and may be mammal-derived.
Then there’s carrageenan, which is extracted from red seaweed but also contains the alpha-galactose sugar. It’s commonly used as a stabilizer in all sorts of foods, meaning it can appear in foods one might expect to be safe, including turkey meat and alternative milks.
“There’s like 50 different names for some of these different ingredients and generic things on packaging, like ‘artificial flavors.’ You can't trust store chicken because they inject it with [carrageenan],” Matthew Overcast said. He’s Jessica’s husband and Lyla’s dad.
"I just, I sat there with this app that they said to use to figure out what she could eat, and I cried in the aisleway. I don't know what to feed my kid anymore.”Jessica Overcast
It’s been two years since Lyla’s diagnosis, and Jessica said some things have gotten better — she’s learned how to shop for alpha-gal safe foods, the family has expanded their flock of chickens and purchased emu to increase the alpha-gal safe foods they produce at home, and she’s even learned how to adapt many of her old recipes.
But, at the same time, some things have gotten harder. Two more of Jessica and Matthew’s kids — 9-year-old Adalynn and 4-year-old Jackson — have been diagnosed with the condition. And so has Jessica.
“It's just amazing the amount of things you would not think of in your day-to-day life that you come in contact with, and I know we've been blessed — our severity levels aren't as extreme,” Jessica said.
Matthew said, inspired by his family’s journey with this condition, he recently ran for Missouri representative — and won. He said he hopes to pass legislation in Missouri that would make the condition reportable.
Overcast said he’s also speaking with those at the national level about passing the Alpha-gal Allergen Inclusion Act, which would add the condition to the list of major food allergens and get the condition placed on food labels.
"There are things for them to eat out there." Grocery stores helping to bridge the gap
The southern part of Missouri — especially the Ozarks alongside the Arkansas border — is reported to be a hotspot for alpha-gal syndrome due, in part, to the high prevalence of lone star ticks in the region. This is the tick primarily responsible for spreading the condition.
As the number of cases has risen in the region, registered dietitians at the local Hy-Vee grocery stores in Springfield began to have more people coming in looking for help.
“We kind of help bridge that gap of we're in the grocery store. We can talk to you about it, then we can physically take you to that product to say, ‘This is high in fiber. This is what's going to help your cholesterol,’” dietician Maddy Clemons said. “So, lots of one-on-one nutrition counseling.”
Clemons has been working as a Hy-Vee corporate registered dietician in the area since February 2024 and said depending on the season, she sees several alpha-gal patients a week.
She added that there’s often a learning curve for her alpha-gal patients who have developed this allergy after a lifetime of eating red meat and mammalian byproducts.
“Just because a label said it might be vegan does not necessarily mean it's alpha-gal friendly," Clemons said. “A big part of what we do is going over [hidden ingredients] because everyone understands the meat and meat byproducts, but they don't understand a lot of those hidden ingredients.”
She said the dietary team at Hy-Vee recognized what a burden it was for patients to determine if something was truly alpha-gal friendly — patrons would spend lots of time checking ingredient lists and even calling companies to ensure that food was safe.
So, a few years ago, the team began posting small signs on products throughout the store that were verified as alpha-gal safe.
"I just want people to know that there is someone out there for them. I know it's very overwhelming, and sometimes it feels like you don't know what to do or where to go."Dietician Maddy Clemons, Springfield Hy-Vee
“We try to do a really good job at making sure that everything is 100% alpha-gal, so no extra hidden ingredients, nothing like that,” Clemons said, “and then we always have our contact information too.”
Clemons said the team has developed a four-page handout of all of their alpha-gal safe products, compiled another handout listing common hidden ingredients to watch for, written several alpha-gal friendly recipes, and even held some community classes for those with the condition.
She said having alpha-gal syndrome can make it more difficult for her patients to get all the nutrition they need. They often need to consider alternative sources for protein, zinc, iron and more.
Which is why, Clemons said, she thinks it can be beneficial having a registered dietitian in a grocery store.
“We can't be having our patients losing 10 to 15 pounds in a week because they haven't eaten anything.” Clemons said. “And although I don't have alpha-gal, as a dietitian I sympathize with my patients. I empathize with them. I'm here to help. I'm not here to judge or make you feel like this is your fault or anything like that. I'm here to make it easier for you.”
To eat or not to eat? Allergists say there are not yet clear answers
Dr. Minh-Thu Le said alpha-gal syndrome is “weird.” She’s a clinical allergist-immunologist at CoxHealth in Springfield who has been treating alpha-gal patients since 2010.
She said awareness of the condition has grown exponentially in the area in the last few years, which is good but has also led to the perpetuation of some incomplete and harmful information.
“Some people ... just avoid every single thing that's ever looked at a cow,” Le said. “That is not what we want, okay? Because that will make you crazy.”
She said that on social media, which patients often turn to for community and information, the most severe alpha-gal reactions are often presented as more common than they actually are.
Le said that while she does see some patients who react when eating dairy products or gelatin, most of her patients only have problems when they physically ingest red meat.
According to a 2020 research article from Scott Commins, a leading specialist in alpha-gal, it remains unclear how likely it is for alpha-gal patients to react to substances that contain lower amounts of alpha-galactose.
Commins wrote that avoidance of dairy products is often not necessary because “80-90% of patients with AGS [alpha-gal syndrome] do not react to milk or cheese.”
He added that it’s not uncommon for patients to have reactions to consuming gelatin, but most can handle “the smaller exposures of everyday life." Andd it’s estimated that only 1-2% of patients with alpha-gal have allergic reactions to carrageenan.
"Food allergies, in general, have a lot of mental health ramifications... that fear, that anxiety around eating in public, around other people, even with other family members who really don't understand the seriousness of the condition."Immunologist Dr. Le, CoxHealth
Dr. Le in Springfield said she advises people approach alpha-gal syndrome with caution because the only way to treat food allergies is to avoid exposure to the allergen, but cutting out too many foods — especially when it might be unnecessarily — can lead to malnutrition and disordered eating.
That’s why she recommends that alpha-gal patients work with an allergist or immunologist. Not only can specialists help families and individuals figure out how to prevent and treat allergic reactions, they can also help them possibly reintroduce foods that contain alpha-gal over time.
“We've been able to get a lot of people able to eat their meat again, even though they had either anaphylaxis or symptoms that were pretty severe,” Le said.
She said there are still a lot of unknowns when it comes to alpha-gal. She and other specialists are seeing patients who are reporting fume reactions or sensitivities to sugars filtered through bone char, but whether this is actually caused by alpha-gal syndrome is not yet known.
Still, Le said, there are things patients can do to take control of the condition, such as avoiding future tick bites and having a plan for treatment if allergic reactions do occur.
For the full audio transcript, click here.
In piece three of "One Small Bite," we will explore the current legislative efforts after alpha-gal syndrome, both at the national and state level.
