||Volume 25, Number 3, Nov./Dec. 2012
Celiac disease and school-aged children
By Shirley Bond
My daughter, now entering Grade 12, was diagnosed with celiac disease (CD) while in Grade 3. Until high school, we met with teachers each September to explain the condition and what it meant for her in the classroom. It was always very reassuring for my daughter when a teacher acknowledged a basic understanding of CD and how it could impact her at school.
What is Celiac disease?
Celiac disease (CD) is an inherited autoimmune disease in which a person cannot tolerate gluten. Gluten is a protein found in wheat, barley, and rye. Oats are also excluded due to contamination during growing and processing. When a person with CD eats gluten it inflames the villi, which are tiny finger-like projections that line the small intestine and grab nutrients as they pass through. This inflammation stops the absorption of nutrients including proteins, fats, vitamins, and minerals such as iron, calcium, and folate, leading to serious health problems.
CD is thought to affect 1 in 100 in North America, yet 97% have not been diagnosed. First-degree relatives of a person with CD have a 1 in 20 chance of developing it. CD testing is also recommended for those with T1 diabetes, thyroid disease and Down syndrome because they have a higher risk.
Symptoms and testing
Attendance at school may be an issue for undiagnosed or untreated children. Common symptoms in children are fatigue, inability to focus, abdominal cramps and bloating, diarrhea (may include urgency and frequent bathroom requests), anemia, constipation, poor growth, dental enamel defects, delayed puberty, and irritability. Dermatitis Herpetiformis is a skin form of CD characterized by a blistering and itchy skin rash.
Symptoms of CD can develop at any age, but diagnosis may take years as symptoms are often confused with other conditions such as allergies, irritable bowel syndrome, lactose intolerance, chronic fatigue, or stress. Diagnosis is made by a simple blood test, usually followed by an intestinal biopsy. The child must still be eating gluten for the blood test and biopsy to be accurate. Delays in diagnosis or not adhering to a gluten-free diet can result in chronic poor health, infertility, osteoporosis, and certain cancers.
Treatment for Celiac disease
CD is a life-long condition, there is no cure. The only treatment is adherence to a gluten-free (GF) diet. Wheat, barley, rye, and oats are excluded for life. After gluten is removed, the intestine starts to heal, normal absorption of nutrients begins and symptoms are eliminated, usually over the first year. While following a GF diet, it is unlikely that a celiac will exhibit any noticeable symptoms of CD. Effects of eating gluten are cumulative and do not produce the sudden life-threatening anaphylactic response common with peanut allergies.
Getting a diagnosis of CD can bring real relief to a child who has been suffering with symptoms, and it’s good news to have a condition that does not requires shots or pills or hospitalization. Newly diagnosed celiacs are referred by their doctor to registered dieticians at local health authorities for instruction on how to manage a GF diet and overcome nutrient deficiencies the child has experienced. These testing and dietician services are covered by the provincial medical services plan.
Getting diagnosed is just the beginning. Learning which foods contain gluten, and reading labels to find hidden sources in food, vitamins, and medications is challenging and adds time to shopping and preparing foods. Safe GF flours made from sorghum, rice, teff, quinoa, beans, millet, and amaranth will present unfamiliar tastes for the child. Gluten is found in regular pasta, cereal, bread, candy and baked goods, frozen burgers, canned soups, marinades, processed meats, and so on. Cross-contamination with gluten-containing foods is a huge challenge; as little as 1 mg of gluten per day may prevent healing. (1/50th of a slice of bread = 1 mg gluten.) At home, celiac sufferers need their own margarine and peanut butter jars, as well as a toaster that
has not been exposed to gluten. Serving utensils and BBQ grates cannot be shared with gluten-containing foods. No more bulk food bins or McDonald’s drive-through. Accidental or deliberate ingesting of even trace amounts of gluten will cause continued intestinal damage, even without noticeable symptoms, and will increase the risk of associated conditions.
In the classroom
• Most kids in school face social challenges, but a special diet can add to these. The child may be teased and feel forgotten when they cannot eat birthday cupcakes at school or ice cream cones on a field trip. The desire to feel normal and fit in can be overwhelming, especially for the newly diagnosed.
• Teachers can notify the child and parent in advance if treats like birthday cake or pizza will be served. The parent can send “look-alike” options such as a GF cupcake or Lay’s potato chips to minimize the attention drawn to the child’s special diet.
• Suggest that the parent send a bag of Hershey’s chocolate kisses or M & M’s to store in your desk for rewards or when unplanned treats are served.
• Washed produce is GF, so celiacs can participate in the Fruit and Vegetable Nutritional Program.
• FAQs on websites of name brand art supplies identify their gluten status. Play Doh, Crayola Dough, Elmer’s finger paints, and paper mâché contain gluten, so are not safe for celiacs. Gluten on hands can transfer to food they eat and be ingested. Even if the celiac does not mix the paste for paper mâché, airborne gluten in the same room may cause symptoms. GF play-doh and paper mâché recipes are available on-line. GF pasta can be used for crafts. The parent can provide safe craft materials, or if not, suggest that the child record the events.
• Food-course teachers should provide the parent with the menu schedule. The child can participate in selections that are GF and parents can suggest GF alternatives to consider. Celiacs should not participate in a class using flour. Provide the child with an alternate activity during these classes and consider giving credit for basic baking they can do at home.
• If field trips include lunch or snacks, notify the parent so the child can bring an alternative. Parents can also call ahead to a restaurant to make arrangements. Chaperones should be informed about the child’s dietary restriction.
• Notify the parent if the child accidentally or deliberately ingests gluten, as unexplained symptoms are always troublesome. Newly diagnosed and younger celiacs may be helped by reminders to manage the change in diet.
• Special bathroom privileges may be required before or during diagnosis or if a celiac ingests gluten. “Holding it” may be impossible.
• Older children may be encouraged to present to the class on CD.
• Consider purchasing an age-appropriate book on CD, or borrow one from the parent, to read to the class.
The following children’s books about CD are available on Amazon.com:
- Cilie Yack is Under Attack, Caryn Talty
- Mommy, What is Celiac Disease?, Katie Chalmers
- No More Cupcakes and Tummy Aches, Jax Lowell
- Eating Gluten-Free with Emily, Bonnie Kruszka
Shirley Bond, volunteer, Victoria chapter, Canadian Celiac Association (a social and educational support group for celiacs and those with gluten sensitivity). victoriaceliac.org