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Oct/Nov 2013 Issue
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Food Allergy Research and Education (FARE) offers teen programs at various food allergy conferences across the country. The organization also has a Teen Advisory Group and a Teen Food Allergy Support Group on Facebook. This year, FAREs Teen Summit is held in Washington, DC, on November 15-17. For additional information, visit foodallergy.org.
In addition, check out the following resources.
Food Allergies and Teenagers
Living with a special diet while navigating the at-risk teen years
Adjusting to celiac disease or food allergies can be challenging at any age but for teenagers, it can be particularly difficult. Studies show that adolescents and young adults have the highest fatality rate from food-induced anaphylaxis. And more celiac teens suffer from depression and disruptive behavior disorders than their non-celiac peers.
Specialists speculate on reasons why the teen years are high risk for those with food issues. When adolescence collides with a food-related diagnosis, it can create a perfect storm, a clash of basic needs. Adolescence is a developmental period when fitting in with the group holds psychological sway. Food-allergic teens must bring their own food to social events, eat food that’s different from their friends, carry epinephrine auto-injectors. They must be hyper-vigilant when their peers are being spontaneous, even impulsive.
These differences can be embarrassing—even agonizing—at an age where most kids don’t want to stand out from the pack. What’s a parent to do?
Diagnosed with celiac disease at age 15 after having debilitating migraines, Jayci Drew initially had a hard time adjusting to her gluten-free diet. During lunchtime in ninth grade, she would occasionally eat cookies or donuts that her friends brought for lunch. Then later in the day, she would feel sick, have migraines or be irritable.
“At first, I didn’t deal really well with going gluten-free. It was okay at home but if I went to the movie theater or out with friends, I’d be tempted to eat gluten again,” says Drew, now 19. “But my migraines kept getting progressively worse. So I took a step back and said, ‘I can’t keep doing this to myself.’”
With a mother, father and sister all diagnosed with celiac disease, Drew’s family was very supportive, making it easier for her to fully transition to the gluten-free diet after those first few rocky months. Ironically, adjusting to Drew’s new condition turned out to be harder for her peers—and even her teachers.
In the small community of Indiana, Pennsylvania, where Drew lived, she struggled to gain acceptance. She was teased and bullied by adults and kids who didn’t understand her disease and thought she was making up her special diet. One teacher would bring in muffins and cookies for the class, deliberately leaving Drew out. Kids even threw things at her. At a time when teens just want to fit in, Drew felt alienated and more and more alone.
“I was faced with a lot of backlash whenever I would say, ‘No, I can’t eat that.’ My classmates said, ‘You could always eat this before. Why can’t you eat it now?’ It was hard to explain to them, because they really didn’t understand,” Drew says.
Drew played high school softball. After away games, the softball boosters would buy each girl a 12-inch sub to eat on the way home. When Drew’s family contacted the booster club president to explain her new diet and request a salad rather than the sub, they were met with resistance. Teammates accused Drew of wanting to be special and get more expensive food. Her family finally had to work through the school system and prove that Drew had a legitimate medical reason not to eat the subs.
These and similar incidents helped Drew appreciate her supportive network of family and close friends.
“I still have to deal with some people who really don’t believe in celiac disease,” she says. “But if I look past that, I know that there are people who are more accepting and that’s where I need to be. I need to surround myself with good friends and family who understand what’s going on.”
Family support is integral to a child’s success in staying on the gluten-free diet, says Ritu Verma, MD, section chief of clinical gastroenterology and director of the Center for Celiac Disease at The Children’s Hospital of Philadelphia (CHOP).
“Overall, it seems that if a child has been diagnosed for quite some time, as they reach their teen years, they tend to take their special diet as their normal. They don’t have as many issues adjusting to their diet, because that’s what they’re used to doing,” Verma says, emphasizing that kids take cues from their parents.
“For the children who get diagnosed during their teenage years, the kids who do very well are those whose parents say, ‘It’s just another adjustment in life. Thank God it’s not anything worse,’” she says. “If a parent has the attitude that it’s the end of the world, it’s harder for the teen. The parents who say that there’s nothing wrong with eating gluten here or there, of course that’s a child who will not follow the diet.”
Many teens are tempted to cheat on their gluten-free diet due to social pressures. Within the first year of diagnosis, 27 percent of celiac teens reported eating gluten either intentionally or unintentionally—about three times more often than younger kids, according to a 2012 study by Pornthep Tanpowpong, MD, at Massachusetts General Hospital.
Making compliance even more challenging, many teens do not have classic gastrointestinal symptoms of celiac disease at the age of diagnosis. Tanpowpong’s study showed that 21 percent of teens had no GI symptoms when diagnosed, compared to 8 percent of infants and preschoolers and 16 percent of school-age kids.
Even with no outward symptoms, ingesting gluten causes damage to the intestine of celiac individuals, no matter how old they are, emphasizes Stefano Guandalini, MD, chief of pediatric gastroenterology, hepatology and nutrition at The University of Chicago Children’s Hospital and founder and medical director of The University of Chicago Celiac Disease Center. “The most important thing to realize is that every time gluten gets in their gut, there is a re-activation of the inflammatory process of celiac disease.”
To help teens adhere to the gluten-free diet, it’s important that they understand the long-term effects of celiac disease—from possible infertility to stomach cancer, Verma says.
“If parents tell kids that they need to be gluten-free so they won’t have a bellyache and they won’t have diarrhea, teens will test it out and they’ll say, ‘You’re lying because I didn’t have diarrhea,’” Verma says. “The point is that they should not have gluten because it causes damage to the intestines. Beyond that, it’s because they can develop other autoimmune diseases.”ý
Every March, CHOP’s Center for Celiac Disease hosts an education day, with breakout sessions where teens talk about subjects like adjusting to the gluten-free diet and how to order gluten-free food in restaurants.
“We gear a lot of the discussion toward adolescents,” Verma says. “I will usually ask them, ‘Where do you hang out with your friends when you’re in the mall? Where do you eat? Where do you shop? What do you do and how do you do it?’ Then I talk to them and try to navigate for them what they can do in the mall and where they can eat.”
Teens with food allergies face the same social pressure as teens with celiac disease but they have the added danger of a potential life-threatening allergic reaction. When food-allergic teens take risks, they are literally gambling with their lives. Studies show that teenagers and young adults are the highest risk group for fatalities from food allergy.
Teens are more likely to be impulsive, eating a food without making sure it’s safe. They are also less likely to carry their medications and less likely to promptly treat a reaction, says Scott H. Sicherer, MD, professor of pediatrics and a researcher at the Jaffe Food Allergy Institute at Mount Sinai in New York and author of Food Allergies: A Complete Guide to Eating When Your Life Depends on It.
“Teenagers may feel that they don’t always have to carry their epinephrine auto-injector if they perceive that they are unlikely to need it or if it’s inconvenient. They may not speak up at restaurants with friends or at parties, either because they think they can control the situation or they feel uncomfortable or embarrassed,” Sicherer says.
According to his 2006 study of risk-taking in adolescents with food allergy, only 61 percent of teens and young adults reported that they “always” carry an epinephrine auto-injector and 54 percent indicated purposefully ingesting a potentially unsafe food.
Many teens are apt to leave behind their life-saving epinephrine auto-injectors or asthma inhalers when going to a sporting event or school dance or while wearing tight-fitting clothes. This is why younger children should get in the habit of always carrying their medications, Sicherer says. Families also should continue yearly visits to the allergist, so the doctor can talk to the teen about peer pressure, bullying, dating and when and how to administer epinephrine.
Kissing is a popular topic, says Sicherer, who researched peanut’s presence in saliva after an individual eats peanut butter. With peanuts, he found that brushing teeth and chewing gum help reduce residual allergen but they don’t completely remove it from the mouth. But if a teen’s partner does not ingest the allergen for four hours and then eats a meal that does not contain the allergen, they’ve likely removed any trace of the allergen from their mouth.
“I’m not worried about a kiss on the cheek—but whatever the person has been eating is in their mouth,” he says. “Teens with food allergies should avoid spontaneous, unplanned passionate kissing. Fortunately, if you’re in a relationship with someone, the chances are pretty high that they’re going to be happy to avoid the food that you’re avoiding.”
In 2010, Sicherer conducted a quality-of-life study which revealed that most teens are concerned about food allergies placing limitations on their social activities, not being able to eat what others are eating and being a burden to others because of their food allergies. Surprisingly, they were much less troubled by their parents being “overbearing” about their food allergies.
“When we asked teenagers what one thing we could do to make living with food allergy easier, they wanted their peers to be educated about food allergy—but they didn’t necessarily want to do the education themselves,” Sicherer says.
Friends can help reduce social stress and add a layer of security, says John Lehr, CEO of Food Allergy Research and Education (FARE).
“Having supportive friends who understand how serious food allergies and anaphylaxis are is important,” Lehr says. “Many teach their friends how to use an epinephrine auto-injector so that they know what to do if there’s an emergency. Carrying two epinephrine auto-injectors at all times is critical to being prepared for an anaphylactic reaction. Educating your close friends about what it is, why you need it and how to use it can help remove worries about feeling awkward.”
As the fourth-generation owner of Chicago’s historic The Berghoff Restaurant and CEO of Berghoff Catering & Restaurant Group, Carlyn Berghoff knows food. When her daughter Sarah was diagnosed with celiac disease at age 13, Berghoff quickly sprang into action, purging her pantry of all gluten. She restocked her kitchen with gluten-free products but was frequently disappointed with the taste and texture. She wanted more for Sarah.
She set out to create gluten-free versions of foods that Sarah and other teens with celiac disease miss the most, co-authoring Cooking for Your Gluten-Free Teen: Everyday Foods the Whole Family Will Love with daughter Sarah, pediatric gastroenterologist Suzanne Nelson, MD, and food writer Nancy Ross Ryan. Teens told Berghoff and Nelson that they craved gluten-free doughnuts, macaroni and cheese, chicken nuggets, burgers, pizza and cake—these recipes and more went into the cookbook. (Many recipes offer dairy substitutions, as Sarah is also sensitive to dairy and chocolate.)
“The gluten-free diet can be particularly challenging for teens because they’re so often on-the-go after school, at sports events, at friends’ homes and at restaurants. And they want to eat the same food as their friends without appearing different,” Berghoff says. “I really want to speak to kids about peer pressure and also about learning how to cook for themselves. They have to survive college. If they can’t take care of themselves, they’re not going to be able to make it over the hump. They need to learn how to read labels, how to cook and how to grocery shop.”
Berghoff and Sarah want their cookbook to provide more than just gluten-free recipes. They hope it also offers emotional support to teens with celiac disease.
“Just because you have this small illness, it’s not going to make or break you,” Sarah says. “Our goal is to show people they’re going to be healthier on the gluten-free diet. They’re going to be living longer. And there is actually a lot of food out there other than gluten-filled stuff.”
Now 16 and a junior in high school, Sarah is increasingly peer-sensitive.
“When you’re a kid, you want to be able to eat the food that everyone else around you can eat. You don’t want to carry your lunch bag everywhere you go,” she says. “Once I got into high school and started to go out with my friends, it hit me. You’re out on a date and they pay for dinner and you have to lecture the waiter about gluten-free food—it’s embarrassing. It’s kind of like, I just want to be normal.”
Many teens with celiac disease are prone to depression. “In teenagers, psychiatric changes, including depression and suicidal ideations, are well described in the medical literature. These symptoms are more serious in celiac teens than in the general population of those with celiac disease,” says Guandalini.
Some 31 percent of celiac teens reported an episode of major depression at some point, compared to 7 percent of the non-celiac control subjects, according to a 2004 Finnish study published in the journal Psychosomatics. (The depression significantly decreased after three months on a gluten-free diet.)
A 2011 Italian study in the journal BMC Pediatrics revealed that girls with celiac disease showed more internalized symptoms, like anxiety, while boys showed higher externalized symptoms, like social withdrawal and attention problems—even after following a gluten-free diet.
Children with anxiety or depression from celiac can be broken into two groups, says Aaron Rakow, PhD, clinical psychologist and director of psychological services for the division of gastroenterology, hepatology and nutrition at Children’s National Medical Center in Washington, DC.
“Prior to diagnosis of celiac disease and the adoption of a gluten-free diet, many children experience mood and behavior disorders often directly correlated with the physical discomfort they experience. When these children adopt a gluten-free diet, many of their physical and psychological symptoms improve,” he says. “However, for a second group of children, even after diagnosis of celiac disease and adoption of the gluten-free diet, the depression and anxiety continue or even worsen because of the psychosocial stressors of living with celiac.”
Rakow works with Children’s National’s Celiac Disease Program, meeting with families upon diagnosis. He says some kids can develop depression and social alienation over feeling like they’re alone with celiac disease. Others can develop anxiety disorders after having to become hyper-vigilant about food and keeping themselves safe.
He instructs parents to keep communication lines open and to be available to their teens. “Tell your child again and again—‘Although you might not want to talk right now, I want you to know that we are here for you, no matter what.’”
“Often with parents, the urge is to attempt to immediately fix the problem at hand,” Rakow says. “I often recommend that parents try to simply be as present for their children as possible, to listen to and support them as needed, while seeking professional mental health support if more significant concerns arise.”
This approach, he says, can bring about positive change and strong parent-child relationships.
This fall, Jayci Drew heads off for her freshman year at Penn State University with a plan (she’s studying petroleum and natural gas engineering) and a strong sense of self. She maintains that the experience of having celiac disease has empowered her in many ways.
“Without the bullying, I don’t believe I would have the self-confidence, integrity, sense of right and wrong or leadership skills that I have today,” she says. “That experience taught me to go above and beyond in tough situations, knowing that I can overcome them.”
The emotional support of family and friends has been critical to Drew’s inner strength. With this type of caring and involvement, many adolescents credit a diagnosis of celiac disease or food allergy with helping make them overall better people.
“You’re able to look at things differently. I don’t judge people the way I was judged when I first came out with celiac disease. I’m more open to others and I make healthier relationships,” Drew says. “It really builds your confidence and self-esteem to be able to say, ‘No, I’m not going to eat that. I’m going to stick to my special diet. This is my health and I know this is right.” LW
Associate editor Eve Becker is author of glutenfreenosh.com. Her daughter has celiac disease.