FeaturesOct/Nov 2013 Issue

Food Allergies and Teenagers

Making Adjustments

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.”

Next: Out and About

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