Three years ago, Maureen Powell discovered after nights of terrifying midnight sickness that her 6-year-old son, Will, is allergic to red meat – an affliction severe enough to cause him to vomit froth.
Not long after that, she developed the red-meat allergy herself, only in her case, the reaction led to anaphylaxis, constricting her throat and choking off breath.
The culprit, the family now understands, is a bite from the lone star tick, picked up in Chatham County where they lived, until recently, on 4 acres of woods.
The mysterious alpha-gal allergy has gone rampant in this part of North Carolina, and as she served me a tasty chicken cutlet with pasta and salad for dinner, Powell explained her family’s complicated path to health.
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The Powells moved to a subdivision outside Chapel Hill, avoiding big yards. They spray both sons, Will and 8-year-old Ryan, with lemongrass oil when they venture outdoors. They had a long fight with their school system over vaccinations for Will, which would have involved his taking medication made with pork gelatin. And today, with both mother and son’s conditions improving, Powell wants to share her experience with alpha-gal, which often goes undiagnosed.
“The doctors would say, ‘It’s a virus. It’s a virus,’ ” said Powell, 42. “This was not a virus. They tested him for cancer. If I can save a parent that utter heartsickness for three months, I’m all about it.”
Much of the country’s work on alpha-gal is happening at UNC-Chapel Hill’s Thurston Arthritis Research Center, where physicians believe it to be regionally centered. Positive blood tests are showing up more in the Southeast than, say, the Rocky Mountains.
“I was in clinic yesterday and I had three brand-new patients,” said Dr. Scott Commins, who sees patients in the UNC allergy and immunology clinic.
Poorly understood, not even formally identified until 2009, the allergy has swollen to 3,500 identified cases in the U.S., but the number is likely larger because many people never show symptoms. And while the lone star tick bite appears to be the cause locally, alpha-gal has been triggered by entirely different ticks worldwide. Also chiggers.
The strangest thing about this strange allergy is that symptoms show up only after three to six hours. Will Powell wouldn’t get sick until the middle of the night, long after eating dinner. And of special interest to UNC physicians trying to nail down the demographics and other characteristics: Alpha-gal isn’t a protein like most allergens. It’s a sugar.
“One of the things that’s absolutely fascinating is it doesn’t appear to follow the rules,” said Dr. Maya Jerath, head of the UNC Allergy and Immunology Clinic.
The Powells cut out all mammalian meat: beef, lamb, pork. That was easy enough. “Emu meat is absolutely fabulous,” Maureen Powell told me.
But then came Will’s flu vaccination, which had to be specially arranged to avoid gelatin. Candy is often gelatin rich, which makes Halloween and birthday parties tricky. Will once got sausage in a school breakfast. “The poor teacher called me in a panic,” Powell said.
Restaurants are a minefield for the Powells, though enough people in Pittsboro have the allergy now that eateries there are hyper-aware. Powell told me that one server told her that alpha-gal sounded too complicated to navigate around and suggested they not come back.
“He almost got fired,” said Will.
“He did get fired,” his mother corrected. “Mommy got him fired. Don’t poke Mama Bear.”
But even harder are the raised eyebrows the Powells get when they explain their allergy. If you or your children have ever suffered from a disorder that is relatively new on the scene, you know how people will act like it’s the invention of an ultrasensitive generation – something their parents would handle with castor oil and a spanking.
“People look at you,” Powell said. “You get the eye rolls when you go out to eat.”
Science can’t yet explain why the ticks cause this allergy or what they are actually doing when they bite. But Powell thinks the prevalence around Chatham County stems from the deer wandering farther into the human world.
When they lived on 4 acres, “We had a family of deer that was so pretty,” she said, “and now I see them and say, ‘Die. Every single one of you.’ ”
The good news is that the allergy levels can drop over time, though not everyone experiences this benefit. Will’s original alpha-gal level came in at 2.45 – far beyond what is considered positive – but has since sunk to 0.9.
I asked Will about his favorite food.
“Peeps!” he told me. “At .9, I can eat things that have gelatin in them. Like marshmallows. Peeps are made out of marshmallows.”
His second-favorite food, also safe for him now:
“Rice Krispy treats.”