Thousands of Missourians could have alpha-gal syndrome, but no one knows

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.

Check back here and watch ABC 17 News at 6 for more about efforts to track alpha-gal syndrome.