Before Zachary Wolkoff was a year old, he’d already made many trips to the Manhattan emergency room, covered in welts and hives. No one could figure out the cause. At the time, his mother, Stephanie Winston Wolkoff, now 44, was exclusively nursing Zach, so a reaction to food seemed unlikely. But an allergist cleared up the mystery. “We were eating nuts,” says Wolkoff, and when we would touch his skin, the oils from the nuts would cause him to break out.”
As Zach got older, the tiniest trace of nuts—even from a knife that was used to cut a peanut butter sandwich and then his food—could cause anaphylaxis. Zach’s throat would close up and he’d have trouble breathing. A few months after his second birthday, Wolkoff ordered takeout, asking that no nut oil be used. When dinner arrived, Zach grabbed a french fry off his mother’s plate and took a bite. A few minutes later, when Wolkoff was putting Zach in his crib, he fussed about his eye. Luckily, she checked on him later. “When I went in there, there was no face,” says Wolkoff. “He was deformed and swollen. I wrapped him in a blanket and ran downstairs.” She took Zach to the E.R., where doctors gave him shots of epinephrine and steroids, which saved his life.
Zach survived, but has spent much of his 12 years living in fear—rarely eating out and limiting activities with friends—as he navigates the often-lonely existence of living with food allergies.
And he’s not alone. The number of children being diagnosed with food allergies has exploded over the past 20 years, worrying doctors, moms and schools alike. Milk, eggs, peanuts, tree nuts, soy, wheat, fish and shellfish account for 90% of all reactions. Not all food allergies are life threatening, but peanuts, tree nuts, seafood and even milk are responsible for a disproportionately high rate of anaphylaxis, a dangerous reaction in which the flood of chemicals released by the immune system leads to a rapid narrowing of the airways. Researchers estimate that in the U.S., up to 17 million Americans have food allergies and they have an impact on 1 in every 12 children under the age of 21. In Australia, 10% of 1-year-olds are affected.
The spread of allergic reactions reported in kids has been shocking: a 50% increase between 1997 and 2011, according to a CDC study released in 2013. The rate of people with food allergies is doubling approximately every 10 years warns the CDC, and the incidence of peanut allergy alone has tripled between 1997 and 2008. The rise in eczema and asthma has gone hand-in-hand with this allergy outburst. And no one really knows what’s causing it.
Fortunately, doctors are on the cusp of some dramatic breakthrough treatments, with oral immunotherapy (OIT) leading the way. During OIT—a method used essentially to train the immune system not to overreact—a patient ingests the food allergen in small but steadily increasing doses, until he or she is desensitized to it. While recent clinical trials have shown that OIT is effective in about 80% of patients if administered by a doctor and the person continues eating the allergen regularly, it’s still not clear whether full tolerance is possible. But in a breakthrough study, scientists have shown that giving infants bits of peanut protein over time could circumvent a peanut allergy altogether.
While OIT isn’t FDA-approved and therefore not offered as a widespread treatment yet—and there’s much controversy surrounding whether it should be—Zach is one of the lucky few participating in a clinical trial at Stanford University combining OIT with a powerful drug called Xolair, an asthma medication being investigated for allergy use. The goal is to desensitize him to peanuts, cashews, pistachios and hazelnuts all at the same time—with the hopes of him eventually losing these allergies altogether.
The Emotional Toll of Living with Food Allergies
ntil recently, kids like Zach had only one way to deal with a food allergy: strict avoidance (which sounds simple, but isn’t) and keeping at hand an EpiPen, a shot filled with epinephrine that is the only known way to halt a potentially deadly reaction. For Zach that meant shunning any packaged food that said somewhere in tiny writing: “made in a factory with nuts.” He also had to be wary of all forms of cross-contamination, through cooking utensils, cooking surfaces or a frozen yogurt machine that had a peanut butter flavor in it earlier. It’s a tall order for a 12-year-old.
A 2010 survey of 40,000 U.S. parents found that nearly 8% percent of children under the age of 18 have a food allergy. The researchers also found that nearly 40% of kids who have a food allergy actually have already survived at least one severe anaphylactic reaction. For families navigating food allergies, the fear of death is constant and just a bite away.
Understandably, Zach suffered from extreme anxiety around food. “I would be scared that I would have to use the EpiPen or go to the hospital and I may die,” he says. He never joined friends for ice cream, and skipped most baseball games (peanuts everywhere), movie theatres (popcorn is sometimes made in peanut oil) and plane rides (peanuts are the go-to snack.) “Vacations were a nightmare,” says Wolkoff. “I couldn’t get on a plane without him having a panic attack for fear other people would be eating nuts.” She’d ask the flight attendant to make an announcement and board early to wipe everything down. “I had to clean the seats, the trays, the lights, even the doors on the bathroom.
Every four minutes, a food allergy reaction sends a child to the emergency room. Reactions happen quickly and it’s not always obvious when to administer the EpiPen. Natalie Giorgi had a mild reaction to peanuts at age 3 and never showed symptoms again until the night she died two years ago, age 13, after eating a Rice Krispies Treat that had peanut butter in it at a party. She sat with her parents and appeared fine right afterwards, but within 20 minutes she was vomiting and struggling to breathe. By the time her father administered two EpiPens it was too late.
According to Dr. Kari Nadeau, associate professor at Lucile Packard Children’s Hospital, Stanford and Stanford University School of Medicine, who is treating Zach, only 55% to 60% of people with food allergies always carry an EpiPen. Benadryl helps with rashes, but can’t prevent anaphylaxis. If a person is wheezing, turning blue or throwing up with hives, use the EpiPen—it can’t hurt. She advises families to have two Epis at all times, because the reactions are so unpredictable. “You can have one type of reaction one day, but then there is a 25% chance of having a completely different reaction to the same amount of food on a different day,” says Nadeau. “If you have a virus or if you’ve taken a hot shower or if you’ve just exercised or been out in the hot sun, that changes your threshold and you could have a full-blown reaction.” In other words, daily life matters. Even a low immunoglobulin E (IgE) test, a blood test to check whether someone is allergic to a substance, doesn’t necessarily mean that person will have a mild response.