Comfort food. In her 12 short years of life, it’s a term that Charlotte Barton could never identify with. For Charlotte, food could kill.
Charlotte was among the 1 in 13 children in the U.S. with food allergies, a figure that’s steadily climbing. Staggeringly, the number of people with food allergies in America has doubled each of the last two decades. It’s a rising epidemic, and for some children, it’s deadly.
Though she lived with a host of allergies that impacted all facets of life, Charlotte was in many ways a typical 12-year-old. The fifth born in a crew of seven children, she was the baby girl of the family. Growing up, she mothered her two little brothers and shared a room with her big sister.
As a little girl, she was a Girl Scout and had an affinity for American Girl dolls and Shopkins. As a tween she loved shopping for makeup and trinkets and wore sweatpants and sweatshirts, even when it was 80 degrees. She was bubbly and outgoing—“sunshine in a soul,” as her mom says—with big brown eyes and long, dark curls.
Last September, just as she was beginning the seventh grade, Charlotte sat in class and reached into a bag of mixed candies from a friend. She confused a SweeTART with a Skittle—something that for most kids, would be insignificant, but for Charlotte, would be lethal. One candy was made with egg whites, and she was deathly allergic.
Charlotte used her EpiPen, the drug she always carried with her, after that accidental ingestion at school. But the next day she suffered a severe anaphylactic episode and was rushed to the emergency room. Despite every lifesaving effort, she died six days later.
The loss has enveloped the Barton family, of Fort Worth, in unspeakable grief. But along with mourning, they live with a lingering sense of disbelief.
“The fact this even happened to her after being so very careful for so very long, it’s hard to wrap our head around,” says Charlotte’s mom, Portia Barton. “One day it was walking, talking Charlotte, and the next it was ‘I can’t breathe, and this is the last thing I’m ever going to say to you.’”
About 150 to 200 people die per year in the U.S. from food-related allergies, according to the CDC. And every three minutes, a food allergy reaction sends someone to the emergency room.
“Any food allergy can be life-threatening,” says Dr. Nana Mireku, a board-certified pediatric allergist at Texas AllergyMD in McKinney. “With all the wrong factors in place, they can be life-threatening at any time.”
A Growing Concern
Eight foods are responsible for around 90% of food allergies: dairy, egg, peanut, tree nut, wheat, soy, fish, and shellfish. And as of January 2023, sesame joined the list of major food allergens defined by law, meaning foods containing sesame are subject to specific food allergen regulatory requirements, including labeling and manufacturing.
In a food allergy, the immune system has an abnormal response to a harmless food protein; it overreacts, triggering symptoms such as digestive problems, hives or swollen airways. In some people, a food allergy can cause severe symptoms or a life-threatening reaction known as anaphylaxis.
Why is this happening more and more often? And why do these allergies strike mostly children?
“We really don’t have a good answer,” says Dr. Aakash Goyal, a pediatric gastroenterologist at Children’s Health in Dallas. One theory, he says, is hygiene hypothesis, or the idea that childhood exposure to certain germs helps the immune system develop, and as our environment becomes “cleaner,” this lack of exposure may contribute to immune deficiencies.
Another thought is that late introduction of certain foods may predispose children to allergies. Experts once thought the best way to fight allergies—particularly peanut allergy, the leading cause of food allergy death in the U.S.—was to avoid allergens in the first years of life. So in 2000, the American Academy of Pediatrics (AAP) recommended delaying the introduction of certain allergens. “It was milk at 1, eggs at 2, peanuts and tree nuts at 3 to 4 years,” says Mireku.
But this may have played a part in the rise in food allergies, as later studies found that earlier introduction might reduce the risk for developing them. “And so now we’re trying to swing the pendulum the other direction to decrease this epidemic that we’re experiencing,” says Mireku.
Know the Signs
Parents might be wary of giving highly allergenic foods to their baby, but the AAP’s most recent guidelines encourage early introduction of foods like peanuts, fish and milk. In general, the AAP says that “these foods can be added to the diet early, just like foods that are not common allergens, like rice, fruits or vegetables.”
Signs of an allergic reaction typically happen right away, from within minutes to up to two hours. “It’s immediate, it’s aggressive. Itching and hives is usually a component, but it doesn’t have to be,” says Mireku. Other symptoms could include lip swelling, vomiting, coughing, wheezing, sneezing, diarrhea and throat tightness. “Everybody is little bit different,” says Mireku, “and it’s not always predictable.”
For Erika Powell, the signs were hard to miss. The mom of three from Azle remembers giving her second son, Apollo, some sweet potato when he 6 months old, and right away, knowing something wasn’t right. “He just flared up,” she recalls. “He got really red hives. That was the start of it.”
Mireku says parents need to be particularly aware of signs of anaphylaxis, a reaction that involves two or more body systems. “So say you ingest a peanut and you’re allergic to it, and your skin is affected with hives and you’re vomiting—your gut is affected,” she explains. “That’s two organ systems.”
In this case, a child needs an EpiPen if they have one, and if not, to be seen by a doctor “urgently,” says Mireku. For nonurgent reactions, parents should talk to their pediatrician. It’s important to keep track of any type of reaction and what food was consumed in order to help doctors suss out potential allergies.
“Whenever we see a patient with a potential food allergy, the most important thing is history. What did you ingest? What happened after that? Within what timeframe? What were your symptoms?” says Goyal. “Then we go a little bit more—did you ingest anything else? Because no food is ingested by itself. If you are eating nuts or egg bites, yes, it’s very easy; but when you’re eating something that has many ingredients, it can be hard to piece out.”
Pediatricians will likely refer patients to an allergist, who can confirm food allergies through skin or blood tests. Oral food challenges, in which a food is eaten slowly, in gradually increasing amounts, under medical supervision, can also help doctors confirm or rule out allergies.
When Food Can Kill
Birthday parties, class celebrations, cookies with Santa—for a kid with food allergies, these childhood joys can be isolating and even scary. Food allergies are more than a physical condition; they impact every aspect of life.
“There’s significant psychosocial impact on the child and the parent all the time, because food is always around.”
For Charlotte Barton, the constant vigilance sometimes took a toll. “Charlotte was always very careful and even phobic about eating sometimes,” her mom remembers. “If you think about it, putting food in your body is supposed to nourish you and bring you together with friends and family; be a place of comfort and coming together. But if you ingest the wrong food, it can literally take your life if you have allergies. How do you talk that fear out of someone?”
A national survey by the Asthma and Allergy Foundation of America found that parents are often impacted even more than patients themselves. More than 80% of parents said their child’s food allergy is “always in the back of their mind.” Fear, anxiety and worry were common themes for caregivers, who reported experiencing a loss of normalcy and a considerable impact on their social life.
“There’s significant psychosocial impact on the child and the parent all the time, because food is always around,” says Mireku. “You can’t go to a birthday party and eat whatever, you can’t just stop at a restaurant, you actually need to plan. Nothing is just spontaneous.”
“It becomes your day-to-day,” says Barton. You read every label, pack every lunch, ensure safe goodies are at every class party and bring snacks everywhere you go.
Dining out or family vacations require extra layers of preparation. “There’s a lot of planning going on,” says Powell. “We say, ‘OK, we’re going here, what are we going to eat?’ If we go on vacation, we do a grocery run. We preplan what restaurants we’re going to visit and make phone calls to ask about the menu.”
Emerging Allergy Treatments
There’s a reason the majority of food allergy sufferers are kids—often, they outgrow them. About 85% of children will outgrow their milk, egg, wheat or soy allergy by age 16. And about 20% will outgrow allergies to peanuts, tree nuts, fish and shellfish.
For those who don’t, allergies are managed by avoiding foods and treating severe reactions when they arise. There is currently no cure for food allergies, though emerging therapies show promise.
Oral immunotherapy, or OIT, helps desensitize patients to allergens by giving them tiny amounts of the food they are allergic to every day, gradually building their body’s tolerance. This starts with a miniscule amount—sometimes as little as 1/10,000th of an egg—administered in doctor’s office. If the patient tolerates the initial doses at the center, they go home with a small amount of that allergen and take a specific amount every day for two weeks. From there, doctors will increase the dose little by little over the course of year.
Once a target dose is reached, patients must continue to eat the food every day to keep their bodies from regaining the allergy.
“This is not something that can be done at home,” says Mireku, who offers OIT at her clinic in McKinney. “This process needs to be supervised. OIT, although it’s great, there is a real risk of anaphylaxis any time throughout the protocol.”
Less risky, she says, is food sublingual immunotherapy, or SLIT. This newer therapy involves placing drops containing traces of allergens under the tongue daily. The continual use of daily sublingual drops gradually reduces allergy symptoms.
The doses in OIT and food SLIT are “magnitudes different,” says Mireku. OIT might be better for someone who wants to be able to have a whole glass of milk, whereas food SLIT might just give parents peace of mind. “Some parents are like, ‘We’re not going to eat it, we just want to know if they have an accident, they could tolerate this much without having a reaction.’”
More Talk, More Action
Kids with food allergies do need to be cautious, but they also need to take part in the normal parts of childhood. Toeing that line can be tough.
“There’s a fine line of having conversations without drilling in fear. But empowering kids who are living with food allergies to not be afraid, but being mindful and aware, is really important,” says Barton.
It’s especially important to keep the conversation going as these children enter their tween and teen years when they’re more apt to take risks. Teenagers with food allergies are more likely to eat unsafe foods, deny reaction symptoms, delay treatment or neglect to carry their life-saving rescue medication, according to the AAP.
It’s also crucial that parents and children who don’t live with food allergies understand the seriousness. Mireku says that up the 30% of children with food allergies are bullied. “And by that I mean, ‘As a joke I threw a peanut in your sandwich.’ That’s not funny, but these are kids, and they might not know how serious this can be.”
Barton hopes to raise more awareness around the gravity of food allergies with a nonprofit she’s starting in Charlotte’s honor, Live Like Charlotte. Her vision is to “advocate and be the voice that educates others,” she says, “because that’s what Charlotte would do.”
Resources for Food Allergy Families
Food Allergy Research and Education, or FARE, offers a wealth of information and resources. The website has guidance on how to read labels, school checklists, recipes and campaigns to prevent bullying.
Spokin is a food allergy app and lifestyle platform, customized to your family’s food allergies, location and interests. You can search for restaurants, find curated lists for places to stay, find allergy-friendly products, and get tips from experts and other food allergy moms.
Allergy Eats lets you search by zip code, city or state for allergy-friendly restaurants nationwide. The guide, created by and for the food allergy community, crowdsources reviews on restaurants’ ability to accommodate food allergies.
AllergenIQ is Dr. Nana Mireku’s digital health platform to educate and provide virtual care throughout Texas and surrounding states.
Top image of Charlotte Barton, courtesy of Portia Barton