Tiffany Bean can no longer hang out at summer gatherings where friends grill burgers because, following a tick bite, she developed a food allergy so severe that she even has reaction being around the fumes of cooked beef.
Five-year-old Joshua Wethington doesn’t like dairy free pizza, but that’s the only kind he can have. Because of a tick bite at some point in his short life, he is so allergic to red meat that allergists recommended removing dairy from his diet because it is a byproduct of cows.
“I’m having a hard time getting him to eat things because it doesn’t taste the same to him,” said Joshua’s mom, Dana Wethington.
Rick Wilson is also allergic to red meat but can eat dairy products. He only had occasional reactions when he was still consuming red meat.
The three are all allergic to alpha-gal, a carbohydrate found in red meat believed to be caused by a tick bite. They also all have different allergic reaction symptoms, too. Bean went from just having an itchy tick bite to having a stomach illness for hours or breaking out into a rash if she consumed anything with alpha-gal. She has lost 40 pounds due to the allergy. Joshua got hives all over his body every day that he consumed red meat. Wilson experienced severe itching and nearly passed out during one of his few reactions.
Speak to three people with alpha-gal and you’ll discover one thing is certain: it’s complicated.
The only similar experiences that Bean, Wilson and the Wethingtons have are the difficulty of living with the allergy and dealing with its affects when they go out publicly.
“People don’t seem to take it seriously,” said Bean. “You tell people that you have it and that you could die from it, and people are like, ‘oh no, you can’t die from eating a hamburger or bacon.’ Well, yeah, you can.”
It’s not uncommon to speak to someone who has never heard about the allergy. People who learn they have alpha-gal often find themselves struggling to find important information because an allergy is treated differently than a disease when reported to the government – which means less access to data.
Food service providers who are concerned about known allergies sometimes still struggle to help sufferers of alpha-gal. They know how to respond when customers say they are allergic to peanuts, but hearin
g someone say their grilled chicken cannot be cooked where beef or pork was cooked is totally different.
“I can understand their frustration,” Kandace Webster, APRN at T.J. Health Columbia Primary Care, said about alpha-gal sufferers. “People don’t realize how much is impacted in their lives.”
Wilson has become a voice for others like him to food servers unfamiliar with the allergy.
“It’s on my mind constantly at a restaurant. You have to ask questions and be careful,” said Wilson. “I have to educate a lot of people in the food industry.”
Wethington has had to do some educating herself, as school officials were unfamiliar with the alpha-gal allergy. She said she has had a great experience working with the school to accommodate Joshua so far.
COMMUNITY BUILDS NETWORK
People with an alpha-gal diagnosis can often feel like they’re on their own, but now, the alpha-gal community is working together through technology to help one another navigate life with the relatively new allergy.
“The app on my phone has been a lifesaver,” said Bean.
She’s speaking of the “Is It Vegan?” app that she learned about from others with the allergy on a Facebook support group.
She uses the app to scan both food and personal products to find out if it contains mammalian byproduct, which she is also allergic to. There can be hidden dangers in items such as shampoo and lotions, in addition to medicine made into gel tablets.
Bean shares the name of the app with any alpha-gal sufferer she can and even to her doctor, who then called another patient to tell them about it.
Facebook support groups are popular tools in the alpha-gal community and both Bean and Wethington are members of multiple groups.
“The AlphaGal Kitchen” is one support group described as, “A place for those that are mastering their alpha gal allergy to share their alpha gal kitchen recipes and experiences, without reservations.”
“Facebook has really been a major help,” said Wethington, who now has to cook everything for Joshua separate from the rest of the family’s food.
“Alpha-Gal Support Kentucky,” “Alpha-Gal (closed for privacy),” and “AlphaGal Girls Only” are a few of the groups where alpha-gal sufferers share their own experiences and also get recommendations on topics like ways to avoid mammalian products, doctors to see and restaurants that are alpha-gal friendly.
Recommended by a member on a Facebook support group, the Munfordville Pool Hall and Grill is a relief to alpha-gal sufferers and also sets a great example for other restaurants for being allergy-friendly in general.
Justin Minton, an employee at the pool hall, said they began to notice that several people in the community have the alpha-gal allergy and decided they should do what they could to make eating out easier for them.
“No one else around here does that so it’s hard for them. Speaking from experience, going to Subway is pretty much the only place my grandpa can go,” said Minton.
The pool hall has designated one fryer where no red meat or cheese is prepared. They have designated skillets to cook foods for separate consumption because people with alpha-gal allergy can have a negative reaction from even the residue from a mammal product.
While people with alpha-gal are helping one another with useful information, Webster urges sufferers to seek professional guidance.
“I do tell patients to be cautious what they research and I guide them to the American Academy of Allergy Asthma and Immunology website because they are the resource for information there,” said Webster.
Information about alpha-gal from the AAAAI can be found at www.aaaai.org.
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By Anna Buckman