Help for Adult Food Allergies is on the Rise

Food allergies are well-known for afflicting children—but they can also appear in adults at any time. Listen as Alison Bunce, Lara Holland and Elika Kormeili speak about coming to terms with new food allergies as adults, and how the desire to help others in similar situations has influenced their careers. Bunce and Holland both became food allergy coaches, while Kormeili added food allergy counseling to her services as a therapist. Continue reading below for the current state of research into, awareness of, and support available for individuals with adult-onset food allergies.

"Nobody Ever Talked About Adult Food Allergies"

Eating out one evening with her family near her home in Michigan, Jennifer Caswell ordered tilapia. "I had only gotten two bites into my plate, and I knew something was seriously wrong," the 40-year-old recalled. "I had to run for the bathroom because I needed to be physically sick."

Caswell had experienced less severe reactions to eating tilapia several times, but it never registered until that day in Bennigan’s that the fish was the culprit. "I remember one of the times I got sick, and I realized, oh, the tartar sauce is expired," she said. "Somehow it did not make anybody else at the table sick except for me."

Even having a child with food allergies, she didn’t make the connection. "Nobody ever talked about adult food allergies. I didn’t even know that was a possibility," Caswell said. "So in my mind, it could not be the fish."

In the restaurant bathroom, her throat began to close—an allergic reaction known as anaphylaxis that can inhibit breathing or lower blood pressure, and that can be life-threatening without medication. "I knew in that moment, oh my God, this is a food allergy. It’s the fish," she said.

Caswell ran back to her table. "In some ways, thank God I do have a child with a food allergy, because I had all of his supplies with us," she said. "I immediately grabbed his Benadryl and I just tore it open and started chugging it." Her husband realized she was having an allergic reaction and rushed her to the hospital without paying the bill.

Click to expand/reduce. People can be allergic to over 170 foods, but 8 types of food are responsible for the majority of food allergies in the U.S. (Image created with Piktochart)

Although her husband did later return to pay for their meal, "I truly do think they thought we were just trying to get out of the bill," Caswell recalled, laughing. "They were like, ’What do you mean she’s having a food allergy, wouldn’t she have avoided that?’"

For Caswell, being part of the food allergy community through her son did not prepare her for the possibility of an adult-onset allergy, but it did ease her adjustment. She said she learned more about managing food allergies from her parent support network than she did from her son’s doctors, who focused on quick appointments over thorough explanations. "You just feel like a fish out of water, you feel like you’re floundering," she said. "If I were an adult who had not had to deal with this [previously], that would have been crippling. That would’ve been really hard."

A recent study found that about half of adults with food allergies developed at least one of their allergies in adulthood, yet other research on adults is limited, and many people remain unaware that food allergies can develop after childhood. The study’s abstract, published in November 2017, notes that "adult [food allergy] prevalence studies have been scant and methodologically limited" compared to the far greater amount of research done on food allergy prevalence in children. "I don’t think there’s been much research done at all, unfortunately," said James Baker, the CEO and chief medical officer of Food Allergy Research and Education, or FARE.

Some 15 million Americans, over 9 million of whom are adults, have food allergies. According to the Asthma and Allergy Foundation of America, food allergies cause around 200,000 emergency room visits and 10,000 hospital stays each year. The Food and Drug Administration reports that anaphylaxis to food results in an estimated 150 deaths annually.

While not all allergic reactions reach the level of anaphylaxis, food-allergic people generally still seek to avoid their allergen to keep from developing other reactions, among them hives, tongue and lip swelling, vomiting, and abdominal cramps. But learning to avoid the problem food, as well as all products that contain it and social scenarios that include it, can be difficult.

Multiple in-person and online support groups exist for parents of children with food allergies to help them navigate the challenges of life with food allergies. However, allergies can also appear in adults at any time. As Caswell discovered, compared to children’s allergies, there remains limited awareness, research or support for adult-onset food allergies. As the number of adults developing food allergies is likely increasing, some have sought to address the lack by conducting new research or by creating support services, from allergy-focused magazines, to social networks, to even dating sites for adults with allergies.

Food Allergies Across the U.S.

Around 4 percent of adults and 8 percent of children in the U.S. have food allergies, according to estimates cited by FARE. In fact, estimates vary, and true numbers are difficult to determine.

"[Prevalence] depends on what food we’re talking about, it depends on what data we’re talking about, it depends on whether it’s self-report or not," said Scott Sicherer, an allergist and professor of pediatrics at Mount Sinai’s Icahn School of Medicine. He added that some estimates put adult food allergy prevalence at between 1 and 3 percent of the population, whereas if mild reactions to fruits and vegetables were included, up to around 10 percent of adults could have a food allergy.

Ruchi Gupta, a researcher and associate professor of pediatrics at Northwestern University, led the recent study on the prevalence of adult allergies. As a pediatrician, her research focus has largely been on children. Gupta explained that most food allergy research targets children because over the past 20 years, an increase in food allergies in children has become "almost an epidemic." Her own young daughter developed a childhood allergy after Gupta entered the field, and Gupta said the experience gave her additional questions to look into in her research. "But as I continued to study food allergy in children, I heard very frequently how much it’s starting to impact adults," she said.

Gupta and her team translated the methodology from their child allergy prevalence studies to determine the prevalence of food allergies in adults, adding to the limited data on adult food allergies. The study surveyed over 40,000 adults. It found that shellfish was the most common food allergy at 3.9 percent, followed by peanuts at 2.4 percent and tree nuts at 1.9 percent.

"I can’t even tell you how many emails somehow I got from adults around the country saying ’This is me, this is what happened to me,’" Gupta said of the responses to her study. "What was really fascinating was [around half] of adults who said they had a food allergy also said that they developed at least one food allergy in adulthood. So that was a large number," she added. She pointed out that the differing methodologies used in existing studies on adult allergy prevalence mean that the studies can’t be compared to indicate whether prevalence is rising. Despite the lack of data, she said that she believes there has been an increase in adult-onset allergies.

Causes of Food Allergies

Jean Fanselow must keep her EpiPen with her in case she has an anaphylactic reaction from accidentally eating shellfish. (Photo: Sarah Rager)

"That’s the next big question: Why," said Gupta of the reasons behind adult-onset food allergies. She listed several theories, including moving to a new environment, having an illness, or experiencing hormonal changes. Baker also pointed to weaker immune systems as being a factor, particularly in young adults. "The immune system is different, it’s not challenged the way it was a couple of decades ago," he said. "People are better protected against infections, both by vaccines and antibiotics." He also said that people’s environments tend to be cleaner, limiting the development of their immune systems.

Baker also mentioned another common theory related to people’s level of exposure to the allergen. "It may be that particularly seafood is something that doesn’t have a lot of exposure in childhood, and it’s not until adolescence or early adulthood when people are exposed to it to develop the allergy," he said. A similar idea holds that long periods without contact with the food could result in an allergy when the food is reintroduced.

For some people, lack of exposure does not appear to be the issue. Jean Fanselow had her first reaction to shellfish after eating it daily while on a trip with her daughter to San Francisco. But she had also eaten shellfish throughout her life. "I ate it consistently, because I’ve always dearly loved it," Fanselow recalled. "Every time we go out, my choice would be scampi, or something like that that had shellfish."

"It certainly would’ve been nice to have something that was a warning," she said, adding that more research is needed.

"If Dr. Gupta’s study holds up, the fact that 4 percent of the population has shellfish allergy as adults is a really significant problem," said Baker. "That frequency is as significant as many of the medical issues that receive much more funding and attention."

Support for Adults

Elika Kormeili, a Los Angeles-based therapist.

Many food allergy resources remain focused on children, from information on how to talk to children about their allergy to guides on sending children with allergies to school. Of the 10 support groups FARE lists in California, eight are intended specifically for families of children with allergies. Rebecca Stewart, a therapist in Los Angeles who began offering food allergy-related counseling after her young son had a reaction to peanuts, said that many adults find ways of dealing with their allergies themselves. She also said that it’s difficult to get adults to show up for support groups for their allergies. "Adults really don’t do a lot of things for themselves," Stewart said. "But they’ll do it for their kids."

Some have seen a need for additional support for adults. Therapists like Elika Kormeili in Los Angeles and food allergy coaches such as Alison Bunce in New York and Lara Holland in Atlanta began offering counseling services after they developed food allergies or intolerances themselves as adults and faced challenges adjusting to them. While food allergy coaches tend to focus on practical strategies for managing the allergy in everyday life, therapists often deal with the depression, fear or social isolation that can result from a food allergy diagnosis.

Other publications and networks, also often created by people with personal experience with food allergies, offer support to the broader food-allergic community. Gwen Smith is the founder and editor of Allergic Living magazine, a print magazine and website in Canada and the United States that seeks to provide information and guidance on managing allergies and asthma. Smith had an anaphylactic reaction to shrimp as an adult in the mid-1990s, before developing additional allergies to peanuts and soy in 2004. A freelance journalist at the time, she wrote an article about food allergies and, through talking to others, realized the extent of the issue for children and adults.

Mary Ray, co-founder of MyHealthTeams which includes MyFoodAllergyTeam. (Photo courtesy of Mary Ray)

Finding she could help fill the need for information and support, she started Allergic Living in 2005. "Everything that talked about food allergies [at the time] just sort of said, ’Here are the top eight [food allergies],’ and ’Here’s the latest statistic on how many kids have it,’" she said. "But in terms of finding something out on adult food allergies, oh, forget it." She said that her website, which offers articles on a range of allergy-related topics as well as an "Ask the Allergist" section, now receives about 2 million visits per year. "People who have food allergies know that we know what we’re talking about, that we really get it," she said.

Social networks can also help people with food allergies learn from and support one another. Mary Ray and Eric Peacock co-founded MyHealthTeams in 2012 and now offer 27 sub-networks that help over 1 million people with chronic conditions, from autism to diabetes, connect with others sharing their condition. They added MyFoodAllergyTeam in April 2016 based on the large number of people who have the condition. Ray said that two-thirds of the network’s members are adults living with food allergies. "There’s definitely a need, and we’re filling it," she said.

Ray said that people often react to being diagnosed with a food allergy in the same way that people typically react to other chronic disease diagnoses. "Their brain just reels," she said. "The first thing they do is they go home, they go to Google, they research like crazy, they get alarmed by things they see, and they quickly realize they have no understanding or framework or filter or perspective about what to kind of put in check and what to question." She said that the network, which allows users to filter by allergy, helps put people in touch with peers for emotional support and advice on living with their allergy.

Arianne Schreer and Alexis Pizzurro, co-founders of Allergic Attraction. (Photo courtesy of Alexis Pizzurro)

"Adult-onset food allergy I think is a really rough one, and all the more reason why it’s critical that individuals find support from other people like themselves," said Ray.

For food-allergic adults who want a closer relationship with others with food allergies, there are dating websites such as Allergic Attraction. Sisters Arianne Schreer and Alexis Pizzurro started the site in 2014 after worrying about how Schreer’s nut-allergic son would fare when he left home for college.

Though the Allergic Attraction website labels itself a dating network, Schreer said that it’s intended as a meeting place. "If they find a relationship or they find love, so be it, that’s great," Schreer said. Pizzurro added that the website currently has a couple hundred people across the U.S., from college students to middle-aged adults, and that they plan to expand the service as their own kids prepare to leave for college.

Smith said that Allergic Living has looked into food allergy dating networks while covering singles with food allergies. "It seems like a great idea except they don’t have much critical mass yet," she said. She also pointed out that food allergies may have a genetic component, possibly increasing the likelihood that the children of two people with food allergies will develop allergies themselves. Still, Smith acknowledged that dating with food allergies can be challenging. "It gets a little embarrassing, because you’ve got to bring up that you have food allergies before you have a passionate kiss with someone because they might still have that allergen around," she explained. "You certainly want to try to find someone understanding."

"An Allergy Can Happen at Any Time"

On the car ride to the hospital after her severe reaction to tilapia, Jennifer Caswell recalled holding her son’s EpiPen, a medication to treat anaphylaxis. She was ready to give herself a shot if her symptoms worsened. At the hospital, doctors were able to stop her reaction, but told her that the allergic reaction would accelerate each time she ate tilapia. "As fast as it happened that time, that basically means I can’t consume it at all," she said.

"It took me four times eating that doggone fish to realize I was having a reaction, a food allergy reaction, and I’d just raised a child with food allergies," Caswell added. Her experience underscores the need for more research. "In my mind, that was insane, that I couldn’t piece that together, that there’s not enough information out there for adults to understand that an allergy can happen at any time to any food, whether you’ve consumed it or not."