Before he helps a customer choose a baked good from behind the counter at his bakery and café in Edmond, Dale Trujillo asks whether they have any allergies.
Recently, more and more people have been saying that they have alpha-gal syndrome.
Trujillo knows exactly what they are talking about. His wife, Rebecca Schuckman, was diagnosed with the same tick-borne condition in late 2024. She can't eat beef, dairy or other mammalian products without having a severe allergic reaction.
For Trujillo, who opened No Cow Bakery & Café last year to create an allergy-friendly restaurant, accommodating customers with alpha-gal hasn't been difficult. The bacon that goes in his signature breakfast burritos, for example, is prepared and cooked separately from other ingredients, with no chance of cross-contamination.
"That's what we're building the business on," he said. "You can walk in here and not worry."
Still, he knows how challenging it can be to see your loved one's dining options shrink, especially when alpha-gal syndrome is added to an existing list of allergies. The couple used to dine out together, but now that Schuckman has been diagnosed with alpha-gal, she prefers to eat at home.
"It was a mental thing for her," Trujillo said. "We found a couple of restaurants that she could go to. That's taken away from her now completely."
Schuckman is one of many Oklahomans living with alpha-gal syndrome — a condition that existed relatively under the radar for years. Now, restaurant owners like Trujillo, doctors, researchers and lawmakers are taking notice and trying to adapt.
What is alpha-gal syndrome?
Most cases of alpha-gal syndrome start with a bite from a lone star tick, which can transfer trace amounts of the alpha-gal sugar molecule through its saliva, according to Tulsa-based dermatologist Dr. George Monks.
"Once [the ticks] bite you and they have this sugar molecule on their mouthparts, it induces your immune system to produce these antibodies against the sugar," he said. "And so then later exposure to these mammal products triggers this allergic reaction."
Cows, pigs and some other animals produce the sugar, so it can be difficult to avoid. Monks said allergic reactions can vary from stomach pain and diarrhea to anaphylaxis and swelling.
"I think over the last 5 or 10 years, we've realized, 'Hey, this is something that quite a few people suffer from,'" Monks said. "It's definitely underdiagnosed and it seems to be increasing."
Now, the condition is gaining national attention, especially because of its prevalence in the popular vacation destination Martha's Vineyard.
Unlike typical allergies, the reaction caused by alpha-gal syndrome is delayed, sometimes beginning hours after a person ate or was exposed to alpha-gal triggers. That's one reason Monks thinks the medical community took a while to catch up.
It took Schuckman months to get diagnosed after she was bitten by a handful of ticks while doing yardwork. She started taking antibiotics for Lyme disease but remained sick. It took visits with multiple different doctors before one suggested she take the blood test needed to diagnose alpha-gal syndrome, she said.
The U.S. Centers for Disease Control and Prevention estimates as many as 450,000 Americans are living with alpha-gal syndrome. The agency also reports that emergency department visits due to tick bites have surged to their highest level in nearly a decade.
"I'm seeing more and more patients that have this condition and it's really impacting their life," Monks said.
Monks said he expects there will be a high prevalence of alpha-gal syndrome cases that impact people's normal routines in Oklahoma because being outdoors is a large part of the state's culture. That's particularly true for people raising livestock that also produce the alpha-gal sugar.
Why Oklahoma?
The lone star tick gets its name from the distinctive white dot on the back of the adult female tick. The arthropod is most common in the southern and eastern United States, where moist leaf litter creates ideal breeding habitats.
But the tick has been encroaching inward in Oklahoma since the mid-80s, according to Bruce Noden, a medical veterinary entomologist who studies vector-borne illnesses at Oklahoma State University. He and OSU ecologist Scott Loss set out to figure out why.
"I started asking the question, how does a tick like this actually survive in western Oklahoma?" Noden said. "And you start driving around out there, and you go, 'boy, there's a lot of these Christmas trees, I wonder if that has something to do with it?' And sure enough, they were loaded."
Noden has found thousands of ticks under a single eastern red cedar tree, which is an invasive species that has spread into Oklahoma's grasslands. White-tailed deer carry the ticks westward, where they drop off into the cedar habitats, forming what Noden calls "islands of ticks."
According to Loss, deer and birds have carried ticks for as long as the three species have existed, but the likelihood of the ticks surviving and establishing an ecosystem in drier climates used to be lower.
"The eastern red cedar coming into the equation and providing the right type of habitat, the right type of humidity conditions, the temperature conditions, the availability of wildlife that use the habitat, is allowing these ticks to now become established and spread, unlike in the past," he said.
Lone star ticks sense carbon dioxide to determine when a new host is close enough to grab onto. The ticks can carry multiple diseases, including Bourbon virus, ehrlichiosis and Heartland virus disease, depending on whether their last meal came from an infected animal.
Meanwhile, Noden said, all lone star ticks have alpha-gal sugar in their saliva, so contracting the condition isn't dependent on the tick's feeding habits. Researchers don't know why some people end up with alpha-gal syndrome, and others don't, but repeated bites or preexisting autoimmune disorders may make a person more susceptible.
Tracking the condition
In November, Oklahoma laboratories and doctors will be required to notify state health authorities of each positive test for a marker of the syndrome. More than a dozen other states have similar mandatory reporting requirements.
Alpha-gal awareness groups have been advocating for states to take action because the federal government doesn't currently require the condition be reported.
The new tracking law was brought forward by Sen. Brenda Stanley, R-Oklahoma City. Stanley said she hadn't heard of the condition before the national advocacy nonprofit Alpha-gal Alliance Action Fund approached her to sponsor the legislation. But after doing some research, she thought the state should start tracking its prevalence. Since then, she said she's had many people reach out to tell her about their experience with alpha-gal syndrome.
"I think once we see how many cases we have, people will see 'I'm not alone,'" Stanley said. "I think that's the hardest thing with any health issue, to make sure that you are not the only one. And other people understand what you're going through, and that just makes fighting a disease easier when you're not by yourself."
The measure requires alpha-gal syndrome to be added to the State Department of Health's published list of reportable diseases and conditions, and to be reported according to rules set by the commissioner. According to the Department of Health, doctors and physicians will be required to report positive lab results from the alpha-gal syndrome blood test.
Some researchers, including Noden, said they are glad Oklahoma is creating mandatory reporting requirements, but there are a few missing pieces in the state's approach.
"The law really covers only the people that are positive," Noden said. "For us to understand if it is increasing or not, we need to understand how many people were tested."
Noden said that without a "denominator" of total tests administered, there will be no way to track prevalence over time. Additionally, the law does not require medical professionals to report symptomatic reactions along with a positive blood test result, which Noden worries may inflate the number of people suffering from alpha-gal syndrome. Many people may test positive for the high antibody levels associated with the condition, but won't have a symptomatic reaction to mammalian products.
Stanley said she would be open to sponsoring future legislation related to alpha-gal tracking that could address researchers' concerns.
Living with alpha-gal syndrome
Schuckman is optimistic that more people will recognize the impact of alpha-gal syndrome as researchers, lawmakers and community members keep talking about the condition, which she said medical providers have long diminished.
"Just being heard," she said. "I think that's what's really important to me for anybody who has this. You aren't losing your mind, you are not whining, you are not a hypochondriac — you are having these symptoms."
She was surprised by her diagnosis, but now she hopes that more people will take precautions to protect themselves and prevent tick bites while they're outside.
Her husband, Trujillo, said he plans to keep creating a place where people with dietary restrictions can eat out without worrying about getting sick, to support his wife and other Oklahomans with alpha-gal syndrome.