The Washington PostDemocracy Dies in Darkness

It’s bad enough to have a food allergy. But then you have to deal with the skepticism.

Food allergies are a mystery that science is just beginning to unravel. (Greg Powers for The Washington Post/Food styling by Lisa Cherkasky for The Washington Post)

Patricia Hopp rose from her seat and took a deep breath. It was the first or second day of middle school, and Trece, as her family and friends call her, had something to say. She’d need her classmates’ understanding, she nervously explained — and perhaps even their help.

Being near someone eating a peanut butter sandwich might pock her skin with hives, she told them. Catching a whiff of dust from nuts could make her breathing more labored. Accidentally touching a peanut could send her into anaphylactic shock. And if she inadvertently ate one, she could, she told them, die.

Thereafter, “I was the girl with the peanut allergy,” set apart from everyone else, says Trece, who’s now 17. “It’s my identity. It’s part of me.” A part she has to not only remind people of, but repeatedly explain.

This summer, Trece was invited to participate in a leadership institute at Georgetown University in Washington, far from her home in Minnesota. As her first out-of-town trip on her own neared, she dialed the university and peppered a campus nutritionist with questions. With her mother looking on, she booked her plane ticket to Washington online, requesting a nut-free flight. Then, to be certain that everything was set, she called the airline. A week before her trip, she called again.

These sorts of daily calculations, each shaded with the possibility of a frightening outcome — a hospital visit, or even death — are the norm for Trece and the estimated 15 million Americans stricken with severe food allergies. Just as normal is the need to convince others that soy or milk or oysters, harmless to most, could have lethal consequences for them. Because even as the rate of such allergies is rising, prompting sweeping changes in the way Americans eat, tell someone that you have a food allergy, and there’s a good chance they’ll roll their eyes in disbelief.

That’s why Trece wears an epinephrine pen in a holster strapped to her ankle. It feels like armor, protection against all the possible outcomes — and also against the skeptics.

Food allergies are a mystery that science is only just beginning to unravel. Eight food categories, including fish, shellfish, eggs, milk and peanuts, are now widely recognized as major allergens. But doctors also acknowledge milder reactions, like itchy mouths and swollen lips, to a host of other seemingly innocuous foods: Kiwi fruit. Hazelnuts. Carrots. Bananas. Watermelon. Some people have reported reactions to ingredients that have never been on any widely recognized allergen lists, including meat or mustard seed.

But which food reactions are allergies, and which are just ... overreactions? We’ve all sat down to dinner with someone who will tick off a list of supposed allergies when prompted by a server: Chicken. Strawberries. Lemon. Chocolate. Or, more recently, you’ve probably dined with someone who won’t touch gluten because they “feel better” when they don’t.

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Mushrooms — that’s my issue. Even I can’t say that it’s an allergy for sure, but I’ve lost my dinner within minutes of eating a chewy sliver of shiitake. My eyes have swollen shut. I’ve suffered what I can only describe as a two-day mushroom hangover afterward. What’s even stranger, I don’t have this reaction to all mushrooms, just shiitakes and portobellos. Truffles, the kind shaved paper-thin over strands of pasta, agree with me splendidly.

So I sheepishly pepper restaurant servers with questions about what exactly lurks within the murky ramen broth or the veggie burger or the dumplings. “Are you allergic to mushrooms,” a server will occasionally reply in a slightly patronizing tone, “or do you just not like mushrooms?”

I can’t exactly blame him for asking. I don’t carry an EpiPen like Trece. I don’t fear for my life. But I do fear mushrooms. I wonder: Do I really have a food allergy — an allergist told me my mushroom reaction was probably connected to my severe mold allergy — or am I just contributing to the doubt around allergies?

People like me aren’t the only cause of confusion. Food allergies are wildly unpredictable. Some sufferers will eat a handful of almonds or drink a glass of milk and get a few hives; others will suffer a fatal attack after eating something stirred with a spoon that had also come into contact with, say, a seafood soup. Reactions can worsen markedly if the sufferer drinks alcohol, exercises or is premenstrual when exposed. Same for those who are stressed or anxious.

Some food allergies just go away over time. Some, particularly peanut allergies, may never fade.

For a long time, especially in the early part of his career in the 1980s, Hugh Sampson counted himself among the food allergy skeptics. A pediatric allergist and immunologist at New York’s Jaffe Food Allergy Institute, he is one of the leading researchers in the field. “A lot of people, including myself, didn’t believe in food allergies,” he says. There’s a reason: They weren’t nearly as prevalent in the past. “Everyone would do skin tests and tell people, ‘You’re allergic to this food.’ But it was quite difficult to find people who had bona fide reactions.”

Back then, “we really didn’t see much in the way of peanut allergy,” Sampson says. “I know because I tested everyone for it. It wasn’t there.”

Then, sometime in the late 1980s and early 1990s, Sampson and others in the medical field say, parents began flooding their offices with children like Trece. Nuts, grains, milk, eggs and a host of other foods were triggering the “bona fide reactions” that doctors hadn’t witnessed before. The children were experiencing anaphylaxis — their bodies covered in hives, their throats closing, their blood pressure sinking, their bodies in shock.

Food allergy afflicts just 4 percent of Americans, according to findings published last year in the Journal of Allergy and Clinical Immunology. The vast majority of sufferers are under the age of 25, and many are very young: An estimated two children in every U.S. classroom now suffer from food allergies. It’s as if severe food allergy appeared from the ether, and the young seem to be paying the highest price, which explains the swift and extreme official reaction.

In 2006, the Food Allergen Labeling and Consumer Protection Act required food packaging to identify ingredients more clearly; manufacturers were prodded to call casein, for example, what it really is — roughly, milk. Every granola bar, bag of chips and frozen dinner now lists in plain language whether it contains allergens. In July, Southwest Airlines eliminated the packets of peanuts it had served aboard its flights for nearly 50 years. (Several other airlines, including JetBlue and United, had already eliminated peanuts, one of the most pervasive and dangerous food allergens.) Some schools have banned peanuts entirely.

But the bans, labeling rules and media attention have stirred a backlash. In Britain, top chefs revolted when the European Union ordered restaurants and caterers to list 14 allergens on their menus. The measure would hamper their creativity, several wrote in an open letter, and besides, the onus should be on sufferers to inform establishments of their allergies, not vice versa.

Some in the medical community and the media also contend that the fear around allergies is alarmist and can be driven by profit-seeking and other motives. (Sampson, one writer in Slate charged a decade ago, is not a disinterested researcher, since he has a child with a severe food allergy.) A 2015 article in Scientific American explored the financial and emotional cost of the high rate of food allergy misdiagnosis. (Skin tests are a frequently cited culprit, yielding positive results when patients may have no reaction to actually eating the food in question.) According to the Centers for Disease Control and Prevention, the leading causes of death for those younger than 15 include accidents, homicide and self-harm. Allergic reactions are nowhere on the list.

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Tania Elliott, an allergist-immunologist at NYU Langone Health, is something of a food-allergy pragmatist. In tandem with the rise in severe food allergy, she says, has come a spike in the number of patients who arrive in her office complaining of fatigue, headaches, bloating or stomach upset, and insisting they be tested for food allergies. She tells patients to reserve testing for when they have a real reaction — and no, fatigue doesn’t count. More likely, what these patients have is an intolerance, she says. “We can’t deny that allergies are on the rise over the past 20 years,” Elliott says, but “I do think that the perception, or the extent of that increase, has been blown out of proportion.”

But talk to affected families, and they’ll tell you there’s still too little awareness. This summer, a 15-year-old Floridian named Alexi Stafford died after unknowingly eating a cookie at a friend’s house that had bits of peanut butter cups scattered among the chocolate chips. Her mother shared her despair on Facebook, blaming confusing packaging and recalling that the family’s entire existence had been “dedicated to keeping our child safe from one ingredient, peanuts.”

Her post has drawn more than 20,000 comments. Most are sympathetic — but several decidedly are not. “How about reading if you know you have such a bad allergy?....again PERSONAL RESPONSIBILITY,” was one typical comment. That kind of snide remark gets at the heart of much of the food-allergy backlash: the sense that all of society is being burdened with the responsibility of assuring the safety of a handful of individuals.

Though every death is shocking, tallying the fatalities “is not a way to look at how impactful this is,” says Scott Sicherer, director of the Jaffe Institute. He’s deeply interested in food-allergy sufferers’ quality of life, and the psychic weight for families. “If you see a child who’s in a wheelchair, you would say, ‘Oh my gosh, this poor child is in a wheelchair.’ ” People with allergies don’t look sick, but they can experience the same kind of anxieties and challenges, Sicherer tells me. “Someone who is living with a food allergy has a quality of life similar to the child who’s in a wheelchair.”

In 2006, Sicherer and the institute conducted a survey of a hundred New York restaurants, from fast-food stops and carryouts to Italian, Asian and continental restaurants, to gauge whether they knew how to handle food-allergic customers. On the upside, many knew that peanuts, milk and seafood were among the major allergens. But then, roughly a quarter reported believing that a small amount of an allergen wouldn’t trigger a reaction; many thought it would be enough to just, say, pick nuts out of a salad. More than a third thought the heat of a fryer would destroy any allergens. (It doesn’t.)

It’s no wonder that many families report stress around the mere act of eating. Stacey Saiontz’s life was altered by her son’s diagnosis. From almost the moment Jared was born, Saiontz says, an angry rash pocked every inch of his tender skin. He seemed to throw up too often. Saiontz ferried him to doctor after doctor, but each sent her home with an unsatisfying diagnosis: reflux, or maybe baby acne. Then she took the 3-month-old to an allergist, who confirmed that Jared tested positive for food allergies. Plural. Dairy, eggs, tree nuts, barley, sesame, oat, sorghum, millet, quinoa, flax, soy — everything, it seemed, had the potential to trigger a riotous reaction in his immune system. He was too young to eat those foods, but Saiontz, 43, a former lawyer who lives in Chappaqua, N.Y., had been exposing him through her breast milk.

When she learned of Jared’s condition, “I was hysterical. I remember it vividly,” Saiontz recalls. “I was like, ‘What is he going to eat?!’ ”

Terrified of exposing their children to allergens, some parents go to extremes. Sicherer recalls one family that chose to eat every meal in a separate room from their son. “It changes the day-to-day living circumstances,” Sicherer says. “People are so worried about reactions, they’re limiting their social activities. And that, I think, is news to the outside world that’s not living with it.”

One of the nation's earliest and most prolific food allergy research hubs, the Jaffe Food Allergy Institute was founded only two decades ago, in 1997. Sampson was the first director. The institute is named for Elliot and Roslyn Jaffe, founders of the retailer Dressbarn, whose family foundation funds the enterprise. Their connection to food allergy is personal: Their son, David, and his wife, Helen, have four grown children, all with several life-threatening food allergies.

The family became involved with food allergy activism, David Jaffe tells me, when the couple’s eldest daughter reached preschool age. Helen took her to school, EpiPen in hand, and calmly explained to the staff what to do if the girl had a reaction. It was the early 1990s, and no one had ever asked the school to do such a thing, the Jaffes recall.

As parents wanting to know not only how to manage their children’s health but how they had ended up with a life-threatening condition in the first place, they’d encountered plenty of dead ends. “There was shockingly little work being done in food allergy, shockingly few places you could go to, even medical centers,” Jaffe recalls. “There was nothing, other than a doctor telling you to avoid the food.”

“We kind of had a choice,” he says. “You take it in stride and engage in daily activities, or you treat [your child] like a victim, and you make sure they only eat food you’ve prepared, and you only travel to places where you bring all the food with them. It’s nuts, no pun intended.” But until the rest of the world catches up, it’s not surprising that so many parents and sufferers choose the latter course.

Trece Hopp just wants people to understand what it’s like to live with an allergy. Like how, when she does find herself in a restaurant, she’ll often nurse a glass of water rather than risk ordering anything to eat.

The Georgetown University dining hall, Trece learned through her dogged phone calls, is completely nut-free, except for a few packaged foods — a concession that didn't exist 25 years ago. This summer, she piled her plate with pasta, turkey and rice, just like other kids. "It was the first time I'd ever eaten in a cafeteria," she marvels. And she didn't have to explain herself to anyone.

Lavanya Ramanathan is a Washington Post staff writer.

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