It’s tough for kids with celiac disease

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 soon follow.

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.

“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.

All gluten-free.

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