Celiac disease can be tough to handle for kids

Last year, Eli Waldman’s fifth-grade science class built a model from graham crackers, marshmallows and cake icing to demonstrate how the Earth’s tectonic plates shift.

Afterward, students were given permission to, well, consume their work. As the kids dug in, Eli, 11, was the odd man out. He has celiac disease, so those foods were not safe for him.

“He had to sit there and watch,” said his mother, Alison Waldman of Arlington, Va. “Eli came home that day and was just devastated.”

Stories like Eli’s are common among children with celiac disease. The disorder, which affects approximately one in 100 American adults and children, is defined by an immune reaction to gluten, a protein found in bread, pasta, pizza crust, cookies, crackers and many other foods containing wheat, barley or rye.

Gluten, which often serves as a binder, is even present in many ice creams, sauces and salad dressings, as well as in some lip balm and vitamins. The immune reaction causes an inflammation in the small intestine, which can lead to a host of problems: abdominal pain, small intestine damage, muscle cramps, fatigue, weight loss and stunted growth. Left untreated, celiac disease may also trigger nervous system diseases and reproductive problems.

Children’s National Medical Center follows about 200 children with celiac disease and saw 40 to 50 new cases last year, said John Snyder, chief of gastroenterology, hepatology and nutrition there. There is no medication for celiac disease. The treatment is lifelong avoidance of all foods that contain gluten, which can be hard enough for adults; for children with birthday celebrations, school functions, sleepovers and play dates, the regimen poses inordinate challenges.

“Oftentimes, kids who are diagnosed with celiac disease feel that they are the only ones out there,” said Aaron Rakow, a clinical psychologist and director of psychological services in the gastrointestinal division at Children’s. “That feeling of isolation is a major risk, both in terms of leading to feelings of depression and to anxiety disorders.”

Addressing such risks was an impetus behind the hospital’s launch this spring of a celiac disease support group for elementary-school children. A teen group will be organized later this year.

For an hour on three consecutive Monday evenings, Eli, Riley McHose, 10, Dana Musser, 10, and Caroline Wilkes, 9, met with Rakow in a tiny conference room at the medical center. Each child attends a different school, although Dana and Caroline, who live in Arlington, were friends beforehand. (Riley lives in Bowie, Md.)

“It’s the first time I’ve met with a group of kids that have the same issue as I have,” said Eli. “It feels good. It’s like they are speaking the same language.”

A recent session resembled one of those parties that can be so troublesome for a kid with celiac disease: Eli, Riley, Dana and Caroline sat at a rectangular table, laughing and discussing friends, school, vacations and sports. Blanketing the tabletop were potato chips, fresh-baked cookies, snack bars, popcorn, cheese, strawberries, bread and candy.

But these foods were gluten-free.

“This allows the kids to be kids without having to be vigilant and without having to worry about what’s going into their mouths,” said Blair Raber. She founded the celiac disease program at Children’s five years ago, after her daughter Kate, then 15, received a celiac diagnosis. In additional to medical and nutritional care, the program provides individual therapy. Support groups were a natural progression, Rakow said. The groups offer the unique benefit of peer support.

“Kids will learn more from another child who has the condition than they will from a parent or an adult who doesn’t have it,” said Ritu Verma, a pediatric gastroenterologist and director of the celiac disease program at Children’s Hospital of Philadelphia.

“What we realized with this peer group [at Children’s National Medical Center] is that the level of candor is really robust,” Rakow said. “The kids are giving each other tips and strategies.”

Dana, who was given her diagnosis five years ago, shared that she had a stash of gluten-free cupcakes in a freezer in her school’s cafeteria. Whenever a classmate or parent brought the class baked goods containing gluten, she retrieved a cupcake. Sometimes, classmates even seemed envious of her food.

Role-playing was used to address the often uncomfortable experience of ordering at a restaurant, which for some kids can be very intimidating. “You don’t ever have to say you have celiac disease,” said Abe Kuhn, who plays basketball at Walt Whitman High School in Bethesda, Md., and met with the group at a recent session. “Just say you have certain dietary issues and that you can’t eat wheat, barley or rye.” Kuhn, 15, received his diagnosis at age 3. He added, “If I’m having dinner at a friend’s house, I tell my friend’s mom that I have a dietary need. It’s fine to do that. It’s fine to ask for food that won’t hurt your stomach.”

Kuhn, who is entering 10th grade, added that gluten-free offerings have improved greatly in recent years. Some markets, such as Whole Foods, have entire aisles devoted to gluten-free products, he said.

At the group’s first meeting, Rakow reviewed the effects that gluten can have on young bodies, and he pointed out that symptoms can differ widely. (Each child and his or her family had previously met with a physician and nutritionist at Children’s.) Riley and Caroline suffer stomachaches after ingesting gluten, while Dana throws up. Others experience rashes or fatigue. Some, including Eli, have hardly any digestive symptoms. In his case, his mother said, the main symptom was that he wasn’t growing.

The four were coached in label reading aimed at detecting sources of gluten. The children became so proficient that they were able to rule out eating a snack billed as “gluten-free” when the label indicated that it had been made in a facility that processed wheat. “Cross contamination,” Dana exclaimed. A pre-summer session was devoted to strategies for navigating summer camps.

While the kids learn, their parents have essentially formed their own support system as they wait in an adjacent room, exchanging ideas on gluten-free snacks and the best grocery stores for celiac diets. All noted benefits of the children’s program.

“I think it helps Dana to feel that she’s not alone and that she can handle this,” said her mother, Jennifer Musser. Dana’s father, Duane, also has celiac disease.

Michelle Wilkes said her daughter Caroline, who received her diagnosis at 6, has become more confident ordering at restaurants. Kimann McHose likes that her daughter “is seeing how other kids manage celiac and getting support other than me just saying, ‘You can’t eat that.’”

Riley, who also has Type 1 diabetes, was given a celiac diagnosis in February. Nearly 10 percent of children with diabetes develop celiac disease.

Blood tests can screen for celiac disease, but the gold standard for diagnosis is an upper endoscopy and biopsy of the small intestine.