Food Allergy Sufferers often Served a Side of Skepticism Alongside their Struggle
There is a big difference between a food “intolerance” and a food allergy, and overuse of the word allergy can cause many to not take the threat seriously. Here’s a story of one teenager who had to stand up in front of her entire middle school and explain the dangers of her peanut allergy. She has learned to advocate for her own safety, and encourages all skeptics to take people living with severe allergies very seriously. Even today there are those in the medical community and the media who believe that the fear around allergies is alarmist and can be driven by profit-seeking and other motives. They should “walk in another man’s moccasins” for a day and then see what it is like to live with a life-threatening allergy.
By Lavanya Ramanathan The Washington Post
Apr 23, 2019
Patricia “Trece” Hopp rose and took a deep breath at the start of middle school with something to say. She’d need her classmates’ understanding, she nervously explained, and perhaps their help.
Being near a peanut-butter sandwich might pock her skin with hives. A whiff of dust from nuts could hinder her breathing. Touching a peanut could send her into anaphylactic shock. And if she ate one, she could die.
Thereafter, “I was the girl with the peanut allergy,” says Trece, now 17. “It’s my identity. It’s part of me.” A part she has to not only remind people about but also repeatedly explain.
Last summer, Trece was invited to a leadership institute at Georgetown University in Washington, D.C., 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 sure everything was set, she called the airline. A week before her trip, she called again.
Such calculations — each shaded with the possibility of a frightening outcome, even death — are the norm for an estimated 15 million Americans with severe food allergies. Just as normal is the need to convince others that soy or milk or oysters could kill them.
Even as the rate of such allergies is rising, many still roll their eyes in disbelief when told that someone has a food allergy.
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 against the skeptics.
Allergies on the rise
Food allergies are a mystery that science is only 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 responses, such as itchy mouths and swollen lips, to a host of seemingly innocuous foods: Kiwi fruit. Hazelnuts. Carrots. Bananas. Watermelon. Some people have reported reactions to ingredients that never have been on any widely recognized allergen lists, including meat or mustard seed.
But which are allergies and which are just overreactions? We’ve all sat down to dinner with someone who will tick off a list of allergies to a server: Chicken. Strawberries. Lemon. Chocolate. More recently, you’ve probably dined with someone who won’t touch gluten because they “feel better” when they don’t.
Food allergies are wildly unpredictable. Some people will eat a handful of almonds or drink a glass of milk and get a few hives; others will die after eating something stirred with a spoon that had 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 go away over time. Some might never fade.
Hugh Sampson long counted himself among 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. They weren’t nearly as prevalent then. “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.
“We really didn’t see much in the way of peanut allergy (back then),” Sampson says. “I know because I tested everyone for it. It wasn’t there.”
But in the late 1980s and early 1990s, Sampson and others in the 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. The children were experiencing anaphylaxis — bodies covered in hives, throats closing, blood pressure sinking, bodies in shock.
Food allergy afflicts 4 percent of Americans, say findings published last year in the Journal of Allergy and Clinical Immunology. The vast majority of sufferers are under age 25. An estimated two children in every U.S. classroom now suffer food allergies. It’s as if severe food allergy appeared from the ether, and the young seem to be paying the highest price.
In 2006, the Food Allergen Labeling and Consumer Protection Act required food packaging to identify ingredients more clearly. Every granola bar, bag of chips and frozen dinner now lists in plain language whether it contains 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 media also contend that the fear around allergies is alarmist and can be driven by profit-seeking and other motives.
One of the nation’s earliest and most prolific food allergy research hubs, the Jaffe Food Allergy Institute was founded 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 son, David, and his wife, Helen, have four grown children, all with several life-threatening food allergies.
The family became active when the couple’s eldest daughter reached preschool age, David Jaffe said. 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 ever had asked the school to do such a thing, the Jaffes recall.
As parents, 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. 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. 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 nut-free, except for a few packaged foods — a concession that didn’t exist 25 years ago. Last 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.