AGS: Not just a red meat allergy
It might be easy to think that something as small as a tick is harmless, but as a growing number of people in Arkansas, Missouri, and Oklahoma are learning, this tiny arachnid can cause life-altering illness.
Living with Alpha-Gal Syndrome is different for everyone, but staying vigilant and stopping the tick bites is one of the steps to getting AGS under control.
Alpha-Gal Syndrome (AGS) is caused by a tick bite from several tick species, although the Lone Star Tick is usually blamed for infecting most patients. When looking at AGS and the process to get diagnosed, you will find many similarities in the stories and advice for patients living with the disease.
While there were many similarities, each person’s story is unique.
Meet Jennifer Burton
Jennifer Burton, who lives in Rogers, Ark.,was diagnosed officially in April of 2017, but she’d been having symptoms since 2011, and even went into remission in 2013, but the symptoms came back in 2016, and she’s lived with them ever since.
Her AGS symptoms started as anaphylaxis, but she now has both that and the gastrointestinal symptoms some people experience. Her husband was also diagnosed after a surgery in 2024.
“It’s been a complete turnaround,” she said of the lifestyle changes that have been necessary due to AGS. “I am highly reactive to the fumes and carrageenan in meat.”
She said it took a while to get her husband diagnosed because he’s been eating the same mammal-free diet that Jennifer eats, so he’s not been as reactive.
Like most others with AGS, the Burtons have not only had to change their diet, but change what products they use, including cleaning products, over-the-counter medications, and toiletries. There are a lot of hidden mammal ingredients in these products and cause a reaction.
For Jennifer, the disease has caused damage to her heart and hearing, requiring surgery, a hearing aid, and early retirement. It’s also led to depression and grieving.
“It’s definitely life-altering,” she said.
Jennifer, who has been a part of the care and outreach ministries at her church, decided to take her experience to encourage others. She founded a Facebook group and turned it into a nonprofit organization called Alpha Gal Encouragers, Inc.
“One of the biggest things for people when they are diagnosed is that they feel all alone.”
The organization not only offers support, but also education on AGS, including prevention and treatment.
“One thing that I’m really trying to do is get rid of the phrase ‘red meat allergy,’” she said. “It’s a mammal meat allergy, including beef, pork, lamb, and rabbit.”
Jennifer said that a big problem she sees is that people remain in denial about their symptoms and she encourages anyone having an allergic reaction or gastrointestinal reaction – even several hours after eating – to get tested for AGS, even if just to rule it out.
“If you know you’ve been bitten by ticks, you need to go get tested. It’s a simple blood test,” she said.
Jennifer added that the Lone Star Tick, Western Black Leg Tick, Black Leg Tick, and Deer Ticks have been proven as possible transmitters of the disease.
“They carry it in their saliva and all it takes is one bite,” she said, adding that preventing tick bites is vital for anyone to avoid getting AGS, especially in high-risk areas and industries like rural farming.
Meet Tina Merritt
For Dr. Tina Merritt, who is the Northwest Arkansas’ region’s expert on AGS and Mast Cell Activation Syndrome, Alpha Gal is about more than just treating her patients well. She’s also a patient and was part of the original discovery of it in the United States. She said that part of the reason she became an allergist is because of her own experience with having AGS since about the third grade. Her practice is in Rogers, Ark.
“I’ve had symptoms for 30 years,” she said, adding that she’s now reactive to both consuming the mammal products and airborne contagions like the smell of bacon cooking.
“I was breaking out to ingredients,” she said. “I carry vegan toiletries when I travel.”
She said that Arkansas is a mandatory reporting state and that the numbers are rising, from about 300 to a more recent 2,000 cases. She said that while her patients come from all over, most are from the mid-southern states.
She said that it’s good for AGS patients to have an action plan on what to do if they are exposed, which can happen even from pet and livestock dander. It’s also important to know what medications are safe to consume because many are made with gelatin, which has mammal ingredients.
Meet Ash Lee Hicks
Ash Lee is a nurse educator and a hobby gardener and farmer who lives in rural Fayetteville, Ark. She was diagnosed with AGS in 2025 after several trips to the emergency room with anaphylaxis. The staff would treat the symptoms, but it took seeing Tina Merritt to figure out the cause of her symptoms.
“I would have a head-to-toe rash,” she said. “Area nurse friends suggested I get tested for Alpha Gal.”
She said she avoided all mammal products while she waited for test results and suggested others who suspect they may have AGS do the same. She also recommends that they carry an EpiPen, which she also does in case of an allergic reaction. She now has both the anaphylaxis and GI-related symptoms to exposure.
“This last year has been a giant science experiment with figuring out what I can eat and what products I can use,” she said. “I was strictly vegan and was terrified to eat in the beginning.”
She echoes advice from others, which is to take precautions to avoid getting bitten by a tick.
“Use bug spray and wear long sleeves,” she said. “Spray Permethrin on your clothes. When you come inside, immediately check for ticks.
“In Arkansas, it’s almost inevitable that you’re going to come across a tick.”
While she’s successfully been able to identify most triggers, she avoids most processed food because it’s not always clear what the ingredients are.
“The diet changes have been positive for my health,” she said.
Ash Lee added that it’s important to research beyond the search summary generated by Artificial Intelligence, as it is often inaccurate.
Meet Kaylyn Barnett
Kaylyn Barnett, who lives in Branson, Mo., was diagnosed with AGS in 2022.
“I would get hives, and my tongue and throat would swell,” she said. “The ER would just send me home.”
She was then diagnosed by an allergist and started changing what she eats and what products she uses including lotions and shampoos.
“That’s been able to keep it at bay,” she said, adding that she still sometimes has reactions to cross-contamination but, unlike many with AGS, Kaylyn can consume dairy products without any reaction.
“It’s changed my life a lot,” Kaylyn said of the syndrome. “I now carry an EpiPen everythere I go and I could die if I eat something I shouldn’t.”
Kaylyn said that it helps that both family members and a friend have AGS and she, in turn, has been able to help others.
“It’s really helpful because I knew what I needed to do when I was diagnosed,” she said. “There’s not a ton of information about it yet.”
She said that anyone who is diagnosed with AGS should find a support group to participate in, adding that there’s several good ones on Facebook.
“They’re very encouraging and helpful,” she said. “They help you keep pushing forward. It’s hard because doctors don’t always know what it is or understand it.”
Meet Chloe Stahl
Of Kaylyn’s support system, Chloe Stahl, her sister-in-law has the unique ability to understand the situation. Chloe, who lives in Stark City, Mo., was diagnosed with AGS in 2022. Her parents have a small farm and her husband works for a local farm.
“Pretty much my whole family has alpha-gal,” she said. “Both my parents and many of my 10 siblings have it.”
Chloe started having unexplained health problems and a doctor mentioned AGS as a possibility. Chloe thought it wasn’t possible because she was having such delayed reactions to her exposures that she didn’t associate the exposures with the allergen. She would experience a racing heart rate, hives, and tightness in her chest, but no anaphylaxis or gastrointestinal problems.
“It’s hard to not be able to eat whatever I want,” she said. “For me, it’s been pretty mild so I don’t have to be quite as careful. I’m just careful about what I eat.”
Chloe agreed with other patients and said it’s important to be tested for AGS if you are experiencing unexplained symptoms.
If you are experiencing unexplained symptoms and have had a recent tick bite, reach out to your doctor for testing or you can reach out to a physician who specializes in AGS and tick borne diseases.
