Thousands of Missourians could have alpha-gal syndrome, but no one knows
Gabrielle Teiner
COLUMBIA, Mo. (KMIZ)
From the moment she wakes up to the moment she goes to sleep, Columbia woman Rebecca McCorkle, 47, has to be on alert for an allergic reaction.
“It can bring on a lot of depression and anxiety because our world is so centered around food and socialization,” McCorkle said. “It’s a serious condition that people have to think of from the time that they brush their teeth in the morning until the time that they take a shower at night and every decision in between.”
McCorkle had been dealing with unexplained illnesses since 2006, but it wasn’t until she was on a road trip, driving back from South Carolina after visiting family for Christmas, that the situation escalated.
“Everyone was asleep, and we had stopped to get something for dinner on our travels back, and while everyone was sleeping, I felt my throat tightening,” said McCorkle. “I was hoarse and started to feel a little panicky and thought, ‘gosh, this is happening frequently and happening while I’m on a long road trip in the middle of the night.'”
She went to the doctor, who ran some tests, all of which came back just fine. They told her it may be seasonal at to go home and take some Benadryl.
But these reactions continued.
“One night, I had shrimp, my face started swelling. One night I had crab, my face started swelling,” said McCorkle. “All of these different things that I would eat were causing reactions; I seemed to be allergic to everything I ate.”
She even had an anaphylactic reaction to antibiotics in 2020.
It wasn’t until then, nearly 15 years since she first started experiencing these unexplained illnesses, that doctors finally started to piece together what this medical mystery could be.
In 2020, McCorkle was diagnosed with alpha-gal syndrome, a potentially life-threatening allergy to mammal products, like red meat. Her doctor ran a specialized test and sent it off to the Mayo Clinic to get the result.
“I remember things coming in one by one in the portal,” said McCorkle. “First thing said beef, I don’t eat beef, And then I remember pork, and I don’t eat pork, I don’t eat lamb, and then dairy, and then I remember seeing something that I had never heard of and it was like this alpha galactose, blah, blah, blah, blah, blah. When I googled it my world just stopped.”
While McCorkle eventually did get a diagnosis, it took years. Just within the past year, she has finally started to feel better … more normal, she says. She had been dealing with hip pain, and as soon as she started becoming more aware of alpha-gal, the pain went away.
McCorkle found out how much work having alpha gal is, as she had to inform her own healthcare providers about the disease.
“It was a lot of self-advocating and a time where I was really afraid, and I was sick and frustrated.”
What is alpha-gal syndrome?
Medicaid data from the Department of Health and Human Services suggests between 7,300 and 34,400 Missourians may have been affected by alpha-gal syndrome since 2021.
In May, New Florence Police Chief Tyler Beasley died unexpectedly, with his family believing, based on information given, that his death was due to an allergic reaction to meat consistent with alpha-gal syndrome, according to a Facebook post from The Chief Mason Griffith Foundation.
In 2024, a New Jersey man died from anaphylaxis after eating a hamburger, making this the first documented deadly case of alpha-gal syndrome, according to the Journal of Allergy and Clinical Immunology.
Many Americans may be living with alpha-gal syndrome and not even know it, as it is growing in numbers but is still widely misunderstood.
Alpha-gal syndrome is a food allergy to products from mammals, which contain the alpha-gal sugar molecule. It can also be found in extracts from red algae.
Unlike most allergies, symptoms can be delayed and take a few hours or even days to become apparent. Symptoms include hives; lip swelling; face, throat and stomach pain; nausea; diarrhea; shortness of breath; psychological symptoms and, in extreme cases, death.
“I realized all of these things that have been happening to me are anaphylactic responses,” said McCorkle. “I thought, ‘Oh my God, I’m so lucky that I haven’t died,’ and could think back to times where I felt like I was about to, and those were scary moments.”
Some people living with alpha-gal syndrome also experience airborne allergic reactions. McCorkle carries an EpiPen in case of a reaction.
“I used to have reactions when I was at a Mizzou football game sitting beside someone eating a hot dog,” said McCorkle. “All of my medicines, all of my hygiene products, all of my dishware, all of my everything was contaminating me.”
Dr. Benjamin Casterline, a dermatologist and immunologist with MU Health Care, is researching alpha-gal syndrome and says it’s not a one-size-fits-all allergy.
“The disease is so heterogeneous, so many different symptoms are ascribed to alpha-gal syndrome, and they vary so much between people, it makes it very difficult to give people targeted advice about what they should and should not avoid, but what they can expect in the future about what the real risk is,” said Casterline.
Some people have reactions temporarily, but for others, it’s a lifelong obstacle.
But a lack of data leaves Casterline, physicians and patients frustrated.
“It’s really frustrating and that’s how I got into alpha-gal syndrome. As a physician, especially as a dermatologist, we have really good medicine that works for people,” said Casterline. “People coming to me with alpha-gal syndrome, we don’t have good solutions for them, we don’t have medicines that have been studied and shown to work, and we don’t have very good guidance either, except avoid everything indefinitely.”
There are many unknowns with alpha-gal syndrome. Doctors and researchers are trying to figure out why certain people react differently, if it can go away over time or with medication and why some people develop it after being bitten.
While alpha-gal is more commonly found in mammal products, some may not realize it’s in a lot more products than the human tongue can taste, or the nose can smell.
Mammal products:
Beef, pork, lamb, venison, bison
Organs
Gut sausage casing
Lard and tallow
Bone marrow
Beef broth
Milk, ice cream and other dairy products
Gelatin
Marshmallows
Cheese containing rennet
Natural flavors
Some natural flavors are made of beef or pork, and people living with alpha-gal syndrome should contact the manufacturer of the product to find out more information.
It is not mandated for companies to disclose if their products contain alpha-gal, which can make avoidance extremely difficult. Cross-contamination via pots, pans, plates and smells can cause a person to have a reaction.
“I remember one time we got a rental car, and this was really early in my diagnosis. I was very sensitive,” said McCorkle. “It was all leather, and I remember getting in, and we had not gotten far down the street and like, my throat started closing up, my face turning bright red, and I was like, ‘What in the world?’ And then I was like, ‘Oh my goodness. It’s the car.'”
Medications such as gel capsules can also trigger an alpha-gal reaction.
A person can develop alpha-gal syndrome when bitten by the lone star tick (Amblyomma americanum). The tick can be distinguished from others by the white dot on its back.
According to a survey from the Missouri Department of Conservation, from 2005 to 2023, out of nearly 17,500 ticks submitted by citizen scientists, 71% were lone star ticks.
According to the Centers for Disease Control and Prevention’s Lone Star Tick Surveillance, Missouri is a hotspot for the pests, along with Arkansas, Oklahoma, Illinois and Kentucky.
Lone star ticks spend their lives in wooded, bushy areas with long grass, making hunters, farmers and outdoor enthusiasts more susceptible to being bitten. However, it can happen just by mowing your lawn too.
When the lone star tick bites a person, the alpha-gal molecules enter the person’s body. According to the Mayo Clinic, experts don’t know why some people have strong reactions to alpha-gal.
“It’s not like Lyme disease,” said Casterline. “It’s not a bacterium that’s transmitted by a tick bite. Instead, it’s a reaction to the tick bite itself.”
Deer serve as key hosts for ticks. In 2024, an estimated 1.7 million deer live in Missouri, which can contribute to the booming tick population.
Lack of concrete data leaves unknowns
Since the condition was discovered in 2009, the Centers for Disease Control and Prevention estimates that up to 450,000 people in the United States may have alpha-gal syndrome, with many not even knowing they have it.
More than 110,000 suspected cases of alpha-gal syndrome were identified between 2010 and 2022.
Note the word “may.”
The CDC writes on its website, “More data and research are needed to understand how many people are affected by this condition.”
Many factors contribute to the lack of tracking and awareness surrounding alpha-gal syndrome.
Right now, reporting alpha-gal syndrome to the CDC is voluntary and decided by each state. If every state decides to make it a requirement to track and report, it would be considered nationally notifiable.
A lack of awareness and the thought of alpha-gal syndrome being rare among doctors have contributed to many people being misdiagnosed.
According to Brittany Adkison with TickBiteData.com, an independent, self-reporting survey taken by people who have been bitten by a tick, in Missouri, out of the 662 responses collected, 64% reported being misdiagnosed with something other than alpha-gal. All survey responses are voluntary and are not established reporting systems, nor is it a clinical study.
Without concrete data to work with, researching this complicated allergy can be difficult. Casterline is working with what he has available to him in the meantime.
Casterline’s patients with alpha-gal syndrome donate a blood sample to his study. The blood is prepared in a biorepository lab by separating it into different parts, specifically the immune cells, to be studied individually.
Researchers put the immune cells through a machine that separates them into different types.
“We can look at each population of immune cells and how those are different between different patients,” said Casterline. “So we can look at, for example, if a patient is coming in with primarily GI symptoms, perhaps they have a population of cells that corresponds primarily to the gut, or a patient that is coming in with primarily hives might have a different population of cells.”
Casterline says if researchers can identify the trends in the cells studied, doctors and physicians can then treat those patients differently and use a targeted medicine approach to treatment, based on their exact immunological characteristics.
Casterline’s study involves only his patients. About 30 samples are stored in a biorepository lab to be studied.
“We’re sort of waiting until we get a large enough number that we can run all the samples in parallel because it gives you better control in the experiment,” said Casterline.
Casterline and his team have noticed a trend in the samples they study.
“From the patients that we have here at the University of Missouri, in children, it’s more common in boys, but in adults, it’s a little more common in women,” said Casterline. “That’s consistent with food allergy generally, more common in male children, in adults, more common in women and female patients, we don’t know why that is.”
These findings are only based on a percentage of people due to a lack of tracking. Casterline’s study is currently not public, but they are trying to open up a public study so anyone who has alpha-gal syndrome can join.
“We need to know how many Missourians are affected to really understand where to direct resources and to secure funding from the federal government to study this more intensively here in Missouri,” said Casterline.
Missouri tasked to track
According to the Centers for Disease Control and Prevention, 12 states mandate alpha-gal syndrome surveillance, plus two more jurisdictions. Those include Arkansas, Delaware, Iowa, North Dakota, Choctaw Nation of Oklahoma, Kentucky, Nebraska, Tennessee, Virginia, West Virginia, Massachusetts, New Jersey, South Carolina and New York City.
Kansas, Minnesota, Rhode Island, Louisiana, Wisconsin and Pennsylvania conduct voluntary alpha-gal syndrome surveillance.
Missouri will be among the states required to report and track elevated blood test levels once Gov. Mike Kehoe signs HB 2372 into law.
The bill sponsored by Representative Matthew Overcast (R-Ava) requires that once laboratory confirmation of elevated levels of alpha-gal syndrome is confirmed in a person, it is reported to the Department of Health and Senior Services within seven days, according to the bill language.
“People are going to be shocked, I think, once we start seeing the numbers,” said Overcast.
The data will also allow governments to target tick hot spots with more resources.
According to Overcast, the Department of Health and Senior Services has six months to get the allergy surveillance program up and running to start reporting once Kehoe signs the law. Overcast and other lawmakers plan to meet with public health departments to figure out how to voluntarily collect data from people who are already diagnosed.
Lisa Cox, spokesperson for the Department of Health and Senior Services, says the additional time will allow the department to update its existing systems and work with labs to facilitate electronic reporting.
Overcast has a personal connection to alpha-gal syndrome. Three out of five of his children have it, along with his wife and brother.
Overcast says the bill had some pushback from lawmakers and state agencies when he first introduced it during the 2025 legislative session and again during the 2026 session.
“Last year, I proposed to have clinicians report, but then we got a lot of pushback from the Missouri State Medical Association,” said Overcast. “This session, we went to early laboratory reporting, which is what we’re seeing in states like Virginia and Arkansas.”
There was also some pushback from his fellow lawmakers, who he says didn’t quite understand the privacy protections already in place for disease surveillance. The Department of Health and Senior Services also had some concerns.
“I think that was a lot of the Department of Health and Senior Services’ initial opposition was that, they were like, ‘we’re going to see so many numbers, we’re going to need more staff and people to help with this,'” said Overcast. “So I’m like, you already have a concern that that’s going to be significant, so let’s do it.”
Cox says an elevated blood test level for alpha-gal syndrome immunoglobulin E is not a diagnosis. She says it is more complicated and time-consuming to make an alpha-gal syndrome diagnosis compared to other mandatory reported conditions like measles.
“The diagnosis requires a multifaceted process involving multiple visits to healthcare providers, including specialists, like allergists,” wrote Cox. “In addition to the bloodwork, medical evaluation must include a detailed history, physical exam, and ongoing evaluation after the exposure to alpha-gal has been removed.”
The department expects the data they will collect to reflect the CDC’s estimates and data on alpha-gal syndrome prevalence in Missouri. Cox says the department will continue educating Missourians on reducing tick bites, educating the public and healthcare providers about alpha-gal syndrome to facilitate faster diagnoses, effective management and support ongoing research being done.
Overcast says the department is looking to get grant money to ensure they have the funding needed to prop up the program.
“It’s going to be important because then once we identify our high prevalence areas, it may only make sense to make a change and make sure that that blood panel is part of that routine blood panel or part of that tick-borne illness panel, so that way we can identify it quicker,” said Overcast. “We’re saving patients money, we’re saving doctors’ time.”
For doctors and researchers like Casterline, the shift from being invisible to trackable will help with researching and understanding the allergy.
“We need to know how many Missourians are affected to really understand where to direct resources and to secure funding from the federal government to study this more intensively here in Missouri,” said Casterline.
To get a clear scope of how persistent this problem is nationwide, advocacy groups are pushing for all states to start tracking alpha-gal syndrome. Overcast is trying to get federal support for the Alpha-gal Allergen Inclusion Act to be implemented on a national level.
The act, HR 1178, would expand the definition of major food allergen to include alpha-gal, which would require food labels to indicate if the product contains alpha-gal.
“We need transparency in labeling across the board, obviously, food products and all that stuff would be great,” said Overcast. “But at a bare minimum, you should be able to go to your doctor or go to your local health department, and they should be able to tell you what’s in your vaccine or what’s in the medication that you need, otherwise, we’re just in dire straits.”
Even with reporting efforts in Missouri having a foot in the door, it will take time to fully digest and understand the research.
Adapting to change
While a diagnosis was a weight off McCorkle’s shoulders, making sure she stayed reaction-free was a heavier burden.
“We used to be very social, and it really just made me not want to go to dinner parties or go to people’s houses,” said McCorkle. “Every time that I turned around, I was having to pull out this laundry list of do’s and don’ts, so I thought, ‘Gosh, I’m not the fun, easy-going person that I used to be.'”
She agrees with Overcast about the importance of labeling. McCorkle says it can be overwhelming learning to carefully read labels and understand the components of ingredients in meat and plant-based foods.
“I have gotten really good at preparing my own things, so if I’m going to a party, I bring something that is alpha-gal safe,” said McCorkle. “I still enjoy exercising, and I recognize when it’s too much for me, allow rest if I need rest.”
There are apps people can download on their phones, like the Fig App, which helps people with dietary restrictions and allergies find groceries and restaurant meals they can safely eat.
McCorkle recalls one instance where she had gone on a run, but had to be picked up on the side of the trail because she was having an allergic reaction to a vitamin E gelatin capsule.
If she is outside, she makes sure to wear long pants tucked into her socks, a long-sleeve shirt, gloves, hat, and bug spray to protect herself from ticks and showers when she’s done being outside.
McCorkle’s wife and son have also been diagnosed with Alpha-gal syndrome.
“It was almost easier when it was just me in the family, because I could compartmentalize and take care of my own stuff,” said McCorkle. “It’s really hard to tell a middle schooler, you can’t eat all of these things, or to even help them understand the depth of it.”
Since her wife and son’s diagnosis, they have gotten rid of their outdoor grill and their old cookware because the pores of the pans and grill grates were contaminated. When they travel, they stay at Airbnb’s and bring their own pots and pans.
“Most people with Alpha-gal syndrome consider something that says it has natural flavors in it as like an umbrella, stay away from that,” said McCorkle. “It’s not just red meat, it’s so much more than that.”
Going vegan or vegetarian may seem like a golden ticket for people living with Alpha-gal syndrome, but carrageenan can be found in vegan foods as well. Carrageenan can be used as a coating material and can be sprayed on cut fruit. It can also be used for water retention, which is applied to fish before processing.
Carrageenans are also found in medications, medical products, personal care products and household products.
“When we go to restaurants, we have to make sure that they have a way that they can prepare something that’s not on a shared grill,” said McCorkle. “It’s a challenge in every aspect.”
McCorkle’s airborne sensitivity has decreased with time, which can happen to some people living with alpha-gal syndrome.
Protecting yourself from alpha-gal syndrome
While there is no cure for alpha-gal syndrome right now, there are ways people can protect themselves from getting it and monitor themselves if they suspect they have it.
The first line of defense is preventing tick bites. The Mayo Clinic recommends that people who are outside in wooded, bushy areas deploy the following precautions:
Cover up: wear shoes, long pants tucked into socks, long-sleeved shirt, hat and gloves
Wearing light-colored clothes will make spotting a tick easier.
Stay on the trail, avoid bushy/grassy areas
Use bug spray with 20-50% DEET
Keep dogs on a leash/ avoid letting them into bushy/long grass areas
Once inside, it’s time to check for ticks on your clothes and body. Any ticks found should be removed immediately with tweezers or duct tape to remove seed ticks. Avoid squeezing the tick’s belly, as crushing it could cause fluid contamination.
Tumble dry clothes in the dryer for 10 minutes to kill ticks on dry clothes (wet clothes may need more time). Cold and medium temperatures will not kill ticks.
Examine your pet if you brought it with you.
Check your backpack or any gear you have with you
Shower as soon as you can
Check your body for ticks. Places to check:
Under the arms
Inside the belly button
In/around ears
Back of knees
In/around hair
Between the legs
Around the waist
Scalp
If you notice you have been bitten, disinfect the bite site thoroughly and monitor your health for around 30 days.
“I think almost everyone recognizes this is a big problem, especially here in Missouri at the state level,” said Casterline. “No one has pushed back at all, saying, ‘Never heard of this, it’s not a problem.’ If you live here in Missouri, you’ve heard of it, and you know it’s a problem.”
Since McCorkle’s diagnosis, she has noticed more awareness around alpha-gal syndrome. In April, a popular Columbia barbecue restaurant posted on Facebook sharing that after researching and becoming more aware of the allergy, they cannot guarantee that they can be 100% alpha-gal friendly.
“I was so grateful that first of all, there was a restaurant in town that wanted to be aware and that wanted to provide a safe place for people to eat, and then to be able to come back out and say, ‘oh my goodness, we’ve actually now learned what this means and we can’t do this,'” said McCorkle. “It was such a validating post.”
McCorkle says if you have random health symptoms that keep popping up with no explanation, alpha-gal syndrome might connect the dots.
“It’s a consuming lifestyle,” said McCorkle. “Knowing your body, knowing your medical team, and knowing how to still do the things that bring you happiness, so finding ways to slowly widen your world back up and finding ways to live with it is key.”