Children and celiac disease: Going back to school

Going back to school is usually full of excitement and anticipation… but for parents of children with celiac disease, it can also be a time of anxiety.

Keeping children gluten-free in the school cafeteria and at school parties, classmates’ birthday parties, and after-school activities can be a trying task for parents. Health care providers—doctors, nurses, dietitians — can support parents in their efforts to keep their children safe when they eat at school and other places away from home.

“How you intervene really depends on the age of the child,” said Steven Schwarz, MD, chairman of the department of pediatrics and chief of pediatric gastroenterology at Long Island College Hospital in Brooklyn, New York. “When they’re younger, they’re really not aware of being different. It’s in the second, third and fourth grades that you have to be very careful with kids. They want to be like their friends — they don’t want to be different.”

SchoolTo avoid being ostracized, Schwarz advises against “broadcasting to the school that you have a child with celiac disease.” However, parents should meet with the school principal, nurse, and dietitian to ensure they are aware of the special needs of students on a gluten-free diet.

Public schools must make reasonable accommodations for children on a gluten-free diet under the Americans with Disabilities Act, according to Pam Cureton, a dietitian with the University of Maryland Center for Celiac Research in Baltimore.

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Dietitians can help parents prepare for a meeting with the school dietitian, provide them with gluten-free alternatives to popular kids’ foods, and offer lunch menu suggestions.

“Diagnosing the disease is only the beginning,” said Cureton. “Health professionals must provide the education and support families need to stick with a gluten-free diet for a lifetime.”;

Health care providers can play an important role supporting parents in their school interactions, according to Schwarz. They could

  • Offer reassurance. Remind parents that children who inadvertently ingest a small amount of gluten—unless they are acutely sensitive—will not experience significant clinical symptoms.
  • Intervene on the family’s behalf. Call and speak with the school principal or write a letter to the school explaining the child’s diagnosis and special dietary needs.
  • Suggest alternatives. Offer parents suggestions for nutritious gluten-free foods they could substitute in their children’s diets and where they could find these products. Provide them with a list of dietitians and information about insurance coverage for nutrition counseling.
  • Recommend sources of support. Direct parents to celiac disease support groups in the community or suggest they start one. Share a list of voluntary organizations parents could contact for information about local support groups and about celiac disease in general.
  • Provide information. Give parents information to help them communicate more effectively with school staff. The Celiac Sprue Association’s website has information for “Getting Along at School”; that includes sample letters parents can share with principals, school nurses, and cafeteria staff explaining what celiac disease is and how they can keep children with the disease safe at school.
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Physicians can provide valuable advice and guidance to school staff members who may be unfamiliar with celiac disease. A letter or phone call from a physician to the school principal or nurse can explain what celiac disease is and discuss a child’s special dietary needs. Physicians also can encourage families to make regular follow-up appointments during the school year to help parents make sure children are maintaining gluten-free diets and staying healthy. (More information about how health care providers can help is available here.)

Parents can also work with important school personnel — classroom teachers, the principal, the school nurse, and the cafeteria manager—to ensure that requisite staff are aware of the student’s needs. Although in-person visits may not be possible during the hectic first weeks of school year planning, letters or prepared notes can explain the important steps in maintaining a gluten-free school environment. Celiac support groups provide sample letters that parents can give to teachers, principals, and other key school staff members. Sample letters and other back-to-school resources are available at the Celiac Sprue Association’s Getting Along at School and Celiac Disease Foundation Kids Korner.

School personnel need to be made aware that “gluten free”; is not limited to cafeteria meals or classroom snacks; gluten is also found in nonfood items including popular brands of clay, crayons, pastes, and paints.

Health care providers also should encourage families to schedule follow-up visits to ensure their children are sticking to their diets, controlling symptoms, growing, and staying healthy.

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“Children of all ages should learn about their disease and diet along with their families and caregivers,” said Cureton. “With a health care provider’s guidance and support, parents and their children can work together to find ways to adhere to a gluten-free diet during the busy school year.”

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