More people than ever before suffer from life-threatening food allergies. Will new research & treatments help reverse this trend?
Tara Mataraza Desmond remembers the sound distinctly: a small whimper from the crib of her 4-month-old, Miles, loud enough to wake her and her husband in the dark of night. Over the past months, Miles’s skin had become increasingly rough, blotched with rashy eczema bumps and in the mornings, his crib sheet would be mottled with bloodstains from the scratches his tiny fingernails would make as he itched. Desmond, a recipe developer and cookbook author, was nursing her twin boys at the time, and knew that eczema could be linked to food allergies. She thought, “This is from something I’m ingesting. I just felt sure of it in my gut.”
Several months later, when Miles was ready for solid food, Desmond sat him in his high chair, took a breath, and fed him a spoonful of plain, homemade whole-milk yogurt. Within minutes, his face looked like someone had smeared rouge all over it. She immediately sent a photo to her pediatrician, who confirmed it looked like a milk allergy. Desmond cut all dairy from both her and Miles’s diet, and brought him to an allergist, where he tested positive for life-threatening allergies to milk, egg, tree nuts, peanuts, sesame and sunflower.
No one else in the family—even Miles’s twin brother—had these allergies. “This was out of nowhere. It felt like a cruel joke from the universe for a food professional like me,” says Desmond. Since then, Miles, now 5, has taken three trips to the ER for accidental ingestion. “It terrifies me,” says Desmond, who shudders about the stories of children dying after being exposed to an allergen and not getting treatment in time. “It’s every parent’s worst nightmare that despite our best efforts to educate and prepare, one little slip-up with food could kill our child.”
The State of Allergies in America
This is the life that more than 4 million American children and their families live—and those numbers have been steadily increasing for decades, according to research published in the Journal of Allergy and Clinical Immunology. In 1999, 3.4 percent of kids had a food allergy; in 2011, the number jumped to 5.1 percent; and by 2015, it was 5.7 percent. The prevalence of peanut allergy alone more than tripled between 1997 and 2008. Even scarier: A recent insurance company assessment found that the number of claims related to anaphylactic food reactions—which cause the airway to constrict and can kill if not treated quickly—increased 377 percent nationwide between 2007 and 2016.
All this is not exactly news in an age where kids often aren’t allowed to bring peanut butter sandwiches to school, restaurants everywhere encourage customers to report allergies, and the question parents automatically ask before play dates is, “Any allergies we need to know about?”
The million-dollar question is: Why is this happening? What has changed so drastically to trigger this widespread problem? Researchers have several ideas, but one of the most controversial theories involves the fact that the old infant-feeding guidelines turned out to be 100 percent wrong. “There was certainly a problem before the guidelines happened. But they didn’t stem the tide,” says Kari Nadeau, M.D., Ph.D., director of the Sean N. Parker Center for Allergy and Asthma Research at Stanford University. In fact, they may have made the growing problem even worse.
Allergy Guidelines Gone Wrong
Food allergies used to be rare. Even as recently as the early 1980s, few children had them. But in the 1990s, more and more kids’ immune systems began overreacting to everyday foods—a chain reaction that begins when food proteins bind to immune molecules in the body called IgE. Those IgE molecules then attach to other immune cells that spurt out histamine and other inflammatory chemicals, and can very quickly cause a life-threatening anaphylactic reaction that must be promptly treated with the epinephrine from an EpiPen.
In response to this upswing, the American Academy of Pediatrics released recommendations in 2000 advising new moms to breastfeed exclusively until their babies were at least 6 months old, and if their infants were “high risk” for food allergy (those with a family history) to avoid common triggers such as peanuts and tree nuts, and consider eliminating cow’s milk, eggs, nuts and fish (the proteins are passed on through breast milk). Parents were also told to delay giving high-risk kids dairy products until age 1, eggs until age 2, and peanuts, nuts and fish until age 3.
Often, however, pediatricians gave this advice to all parents, not just those with infants at risk. The guidelines came with the following caveat: “Conclusive studies are not yet available to permit definitive recommendations. However, the following recommendations seem reasonable at this time.”
If these guidelines seem rather Draconian, they were. Parents had to bend over backwards to avoid these foods, both in their own diets (for nursing moms) and their child’s. Yet they were based almost entirely on “expert opinion,” not solid research. “Not unlike a lot of guidelines at the time, there were people who sat around in a room and, based on what they thought, made decisions and developed recommendations,” says researcher Wesley Burks, M.D., executive dean of the University of North Carolina School of Medicine.
They surmised that delaying the introduction of these allergens would give an infant’s immune system time to mature and respond normally when finally exposed to the food—preventing allergies from occurring. This idea was based partly on research in mice, and on some observational studies showing that when mothers nursed exclusively and avoid allergenic foods, it led to less eczema, which is linked to food allergies.
Experts had the best intentions, but were working with limited data. Despite the fully acknowledged uncertainty of these recommendations, pediatricians all over the country—and world—began counseling parents to avoid feeding allergens to their babies.
The Shifting Science
But by 2010, the science of immunology had evolved dramatically—a lot more research had been conducted and a clearer picture of how allergies work had emerged—and experts began to think that waiting to introduce allergenic foods might not be so helpful after all. A panel convened by the National Institutes of Health revised the recommendations to say that, in general, there was probably no need for infants beyond 4 to 6 months to steer clear of common allergens. This was, again, based largely on “expert opinion.”
Then, in 2015, everything changed. British researchers had noticed that Jewish children living in the United Kingdom were 10 times more likely to develop peanut allergy than Israeli children of similar ancestry. One reason they thought this might be is that in Israel, parents freely give their babies peanut products, usually by 7 months of age.
To determine whether this early introduction of peanuts could be protective against allergies—rather than promote them—they conducted a trial called Learning Early About Peanut Allergy (LEAP), recruiting 640 infants between 4 and 11 months who were considered high-risk for developing the allergy. The babies were split into two groups: one that regularly ate a peanut snack called Bamba, and another that wasn’t exposed at all. Five years later, the peanut-eating group had 86 percent fewer cases of peanut allergy than those who avoided them.
This landmark study stunned the world. “LEAP was a game-changer because it proved through a randomized, controlled trial that it was better to eat peanuts early and often to decrease the likelihood of developing an allergy,” says Nadeau. “It flew in the face of the mantra that we should avoid them until 2 or 3 years of age.”
In 2017, based primarily on the LEAP findings, the NIH panel published new guidelines for peanuts that completely flipped the script—recommending that kids with an elevated risk (including those with severe eczema or an egg allergy) start eating foods containing them around 4 to 6 months of age, as long as they were given the go-ahead from an allergist first. There has been no formal update for other allergens, but it was a big lesson learned. Recent research estimates that early exposure to peanuts and other foods could prevent tens of thousands of kids from developing allergies, and perhaps stall, if not reverse, the trend.
New Treatments, New Hope
But what about all the kids who already have food allergies—like Desmond’s son Miles—or those who develop them anyway?
The only currently accepted “treatment” in the U.S. is the Avoidance Maintenance Strategy (AMS), which is really just medical speak for: don’t eat the food you’re allergic to; and if you do accidentally ingest it, you must immediately inject yourself with an EpiPen (or take Benadryl for less severe reactions) and seek medical attention.
In a country stuffed with allergenic foods, this frightening scenario happens to between 15 and 75 percent of food-allergic kids annually (depending on the allergen) and racks up $25 billion in health care and other costs related to the disorder.
Researchers want to give patients more options. “Instead of just offering the Band-Aid of epinephrine, we’d rather offer a therapy that could actually mitigate and perhaps eradicate their food allergy,” notes Nadeau. A treatment called oral immunotherapy (OIT) that’s currently in clinical trials may be the best way to do this.
Doctors use immunotherapy all the time to treat pollen and animal allergies—giving patients a minuscule dose of the thing they’re allergic to, and increasing it little by little over time, until they’re desensitized to it. Over the past 10 years, some allergists have started treating their patients with OIT, even though it’s not yet accepted as a mainstream therapy. The big difference: you can’t die from pollen, but the wrong dose of a food allergen could trigger a life-threatening reaction.
It can, however, have impressive results. A breakthrough study in 2014 found that over the course of several months, 84 percent of kids were able to work up to eating about 20 peanuts without having a reaction. And there’s evidence that when an already-approved asthma drug called omalizumab (which blocks IgE) is coupled with OIT, patients become desensitized to the food more quickly, often to a higher dose, and with fewer side effects. Some companies are also trying to standardize OIT by creating a “drug”—essentially putting precise amounts of peanut flour into capsules and giving them in slowly increasing doses as part of a specific OIT protocol. One called AR101 is now in FDA trials.
Can We Wait for the Future?
Not everyone is happy waiting for the government’s stamp of approval, though. Anaphylactic food reactions harm or kill kids, unpredictably and too often, says Richard L. Wasserman, M.D., Ph.D., medical director of pediatric allergy and immunology at Medical City Children’s Hospital in Dallas, and director of the Dallas Food Allergy Center. And studies show that food-allergic children face social isolation, bullying and are more likely to suffer from anxiety disorders. “So waiting for more studies,” he says, “is not a trivial exercise.”
As a result, he and a number of allergists have been using some well–researched oral immunotherapy protocols in their private practices (no hospital is doing OIT, except in research trials). Wasserman has treated more than 600 patients for a variety of food allergens, and about 80 percent have successfully reached what’s called a “target dose”—say, 12 peanuts a day, or an 8-ounce glass of milk. In a research paper Wasserman published with four other allergy centers (all using different protocols), a similar percentage of kids were able to tolerate the foods they were previously allergic to. Though they often need to continue the oral immunotherapy for life—research shows that if patients stop regularly eating the allergen, the tolerance often goes away—the fear of accidental ingestion is almost eliminated.
“It requires a big commitment from families, and some decide it’s more trouble than they want to deal with, or drop out because of repeated reactions,” says Wasserman. “But the goal of the therapy is to normalize life.” And in the majority of kids, it does. Aisha Kalim’s 10-year-old son did OIT with Wasserman for five different foods—milk, wheat, egg, peanuts, tree nuts and shellfish—starting with one food at a time when he was 5. He can now eat them all.
“It has changed our lives,” says Kalim. “I used to be in constant fear when I wasn’t with him. Now he can be with his friends, be independent. It brings tears to my eyes.” Still, the food allergy community as a whole does not consider OIT a mainstream treatment, and with its potential for side effects, it’s not to be taken lightly. Miles’s doctor, for one, has never mentioned it as a possibility outside of a clinical trial.
Living with the Enemy
So for now, dodging foods with nuts—or eggs or milk—is all most kids can do. When Desmond first found out about Miles’s food allergies, her instinct was to get rid of everything in the house he could possibly have a reaction to—a culinary retreat from the world. But eventually she and her husband changed their minds. “We just felt like he’s going to be surrounded by these threats his whole life, and the sooner he recognizes them and learns to live with them, the safer he’s going to be,” she says. Cooking became a way to reclaim control. “Miles has five major allergies, and that feels like a lot. But there are a gazillion ingredients in the world,” she says. “I try to think of it like, Oh, look at all these possibilities!”
As for the time Miles spends away from her, Desmond can only depend on the vigilance of the other adults in his life. “I don’t expect the world to stop for my kid, but I hope that people are more aware and sympathetic to how real and scary it is,” she says. And she dreams of a day when a treatment will provide the ultimate protection for her son. “An accident with food could kill Miles,” she says. “If desensitization could cure him, or even just buy his system more time for medical intervention, I would sleep better for the rest of my life.”