CHAPEL HILL, N.C. (WNCN) — It’s an allergy that’s “tremendously underdiagnosed,” according to one University of North Carolina doctor, and one many physicians aren’t even aware of.
Maureen Powell and her 6-year-old son, Will, have Alpha-gal, which means they’re allergic to meat.
Will was diagnosed first after months of agonizing gastrointestinal problems three years ago.
“He would have horrible GI symptoms. He would vomit in the middle of the night, always around midnight and we couldn’t figure it out for about three months,” Maureen Powell recalled.
Doctors thought it was a stomach bug or a virus.
Powell continued, “We were at cancer doctors, pediatric neurologists, gastroenterologists. It was three months of a nightmare trying to figure out what was wrong with him.”
After a seventh or eighth visit to the pediatrician, they finally got answers.
Powell said, “We went back to the pediatrician probably the seventh or eighth time and our pediatricians nurse was just newly diagnosed with Alpha-gal and she said I want you to take Will to an allergist and get him tested for [Celiac disease] and Alpha-gal.”
Will tested positive for Alpha-gal, an allergy to the sugars found in meat from mammals and believed to be caused by a tick bite.
Dr. Maya Jereth is Will’s allergist and a member of UNC’s Thurston Arthritis Research Center. She is studying the allergy, making UNC one of the few institutions in the U.S. researching Alpha-gal.
“We have really only become aware of this allergy over these past 10 years,” she told CBS North Carolina, adding, “We don’t know definitively what causes it or more importantly how the tick would cause it, but the association seems to be quite strong.”
Dr. Jereth says symptoms take hours to show up, and the allergy can cause everything from hives to abdominal discomfort to the most serious: a drop in blood pressure.
“This reaction can be life-threatening if it’s not reversed in time,” she said, adding patients must treat it as an emergency and use an Epipen.
At the time of Will’s diagnosis, the family lived on a four-acre farm. They’ve since moved to a less rural Chapel Hill address to hopefully reduce their chances of encountering ticks.
They’ve also eliminated all mammalian meat products from their house but it goes beyond just beef and pork.
The sugars found in meat from mammals is also in toothpaste, lotions, sunscreens, antibiotics and in some cases, vaccines. The flu shot, for instance, has gelatin in it, which comes from mammals.
“We have to order a special flu vaccine,” Powell explained. “I just had to get permission from the state to have Will immune from having to take a booster immunization shot because it had a pork product in it.”
“If you’re sensitive enough, yes, you potentially have to be careful about the flu vaccine,” Dr. Jerath explained. “I do want to state though that it’s a small minority of patients who are that sensitive. The vast majority of my patients do fine just avoiding eating beef and pork.”
The sugar is also in candy.
“Being a mother and watching your son have to not be able to eat gummy candies or go have Halloween and say, ‘Sorry, honey, you can’t eat that.’ You know, everyone’s having s’mores around a campfire and he can’t do that. It’s one of those things that you just say, ‘Just give it to me. Please. Just let him be okay’,” Powell said.
Powell discovered she has Alpha-gal almost by mistake. She’s already eliminated beef and pork from her diet because of Will but then one day she had beef by accident.
“They had inadvertently given me beef instead of chicken and about three and a half hours later at the park I couldn’t breathe,” she recalled, adding, “I remember my tick bite and I didn’t get reactions until about a year later, but we were avoiding mammalian products entirely.”
Dr. Jerath’s is examining how many people are actually impacted and so far she has found as many as one in five people could have the ability to develop the allergy.
Partially because the reaction comes hours later and may not seem to be associated with eating meat and because so few people know about the allergy.
“I do know that in my clinic routinely every week, I see several patients coming in with this allergy. I do believe it’s tremendously underdiagnosed,” she said, adding, “A lot of physicians are not aware of it.”
There is some good news. Over time, Dr. Jerath has seen that the body can clear the allergy.
“The tendency of the body is to actually clear it. To clear the allergy. For people to essentially outgrow the allergy over time,” she said, adding, “It is not a life sentence, but it also tells me it’s rare because only three out of 300 have cleared it.”
Maureen and Will just learned in recent weeks that they are close to being completely clear, making this year’s Easter the sweetest in years. Will can now eat marshmallows and rice crispy treats.
The Powell family hopes sharing their story will help others.
“If I can save a parent going through three months of thinking the absolute worst of what’s going on with their child, then maybe that’s why I have Alpha-gal or Will has Alpha-gal,” Maureen Powell said.