Celiac disease and your child
What is celiac disease?
Celiac disease is a condition triggered by dietary gluten, a protein found in wheat, barley and rye.
Celiac disease is not a food allergy. It’s an auto-immune disorder: The person’s body responds to gluten by producing antibodies that attack its own tissues. When people with celiac disease eat foods with gluten, the small intestine becomes damaged. This damage makes it difficult for the body to absorb nutrients, which can lead to a number of health problems.
In children, undiagnosed celiac disease can affect growth and development.
Celiac disease affects about 1 in 100 people in Canada. If you have a close relative (such as a sibling or parent) with celiac disease, you have a greater chance of having the disorder.
What are the symptoms of celiac disease?
In children, some of the more common symptoms of undiagnosed celiac disease are:
- Poor growth or weight loss
- Lack of appetite
- Stomachaches or bloating
- Fatigue or irritability
- Iron deficiency
However, about half of all people with celiac disease don’t have any gastrointestinal symptoms.
How do I know for sure my child has celiac disease?
Talk to your child’s doctor before taking gluten out of their diet. Otherwise, test results could be affected, making it difficult to correctly diagnose your child.
If your child’s doctor suspects celiac disease, they may order bloodwork to screen for the condition. If the blood test is positive, your child will be referred to a gastroenterologist for more tests and a formal diagnosis.
If your child is diagnosed with celiac disease, it is helpful to meet with a registered dietitian experienced with the gluten-free diet. The dietitian will help you learn more about meal planning, reading labels, and ensuring your child has a healthy, balanced diet. Talk to your doctor about a referral.
What is the treatment for celiac disease? Is there a cure?
The good news is that any damage to the small intestine will heal once your child stops eating gluten.
There is no cure for celiac disease. The only treatment is a lifelong gluten-free diet, which means not eating any food with wheat, barley, or rye. Although oats do not contain gluten, they can be contaminated during harvest or processing, so it’s important to use oats labelled “gluten-free”.
Common gluten-containing foods include breads, pasta, pizza, many desserts, and breaded meats. However, all of these foods can be made gluten-free.
Many foods are naturally gluten-free: fruits, vegetables, legumes (like chick peas, lentils), most dairy products, fish, tofu, and unprocessed meats.
When you are preparing gluten-free foods, you need to ensure they are not contaminated by foods that contain gluten. To avoid cross-contamination:
- Use a separate toaster for gluten-free bread.
- When deep frying, use fat/oil that has never been used for gluten-containing foods.
- Cook gluten-free pasta in water that has not been used to cook gluten-containing pasta.
- Use separate cutting boards for gluten-free foods.
It might sound complicated at first, but you will quickly learn how to safely prepare gluten-free foods, how to read food labels for sources of gluten, and what questions to ask when you eat outside your home.
Canadian labelling laws are very clear, and packages must indicate if wheat is present.
Can my child still go to birthday parties?
Yes! Birthday parties, sleepovers and playdates are important for children to develop and nurture friendships (and they’re a lot of fun!). It takes some extra planning and preparation, but your child can participate. For example:
- Talk to the host parents about celiac disease and your child’s needs. You might be surprised at how much they are willing to do to ensure your child is included in the fun.
- You can make your own gluten-free birthday cake/cupcakes to send with your child to a party. Consider asking the host parent if you can make enough to share with everyone.
- If the host is ordering take-out pizza, call the restaurant ahead of time to ask about gluten-free options and food preparation practices (to ensure there is no cross-contamination). You can also prepare your own gluten-free pizza in advance and send it with your child.
We have listed some resources below that have lots of ideas about daily living and special events.
How does celiac disease affect a child at school?
Some of the symptoms of undiagnosed celiac disease described earlier may affect a child’s ability to learn. A child may be going to the bathroom often, or feel unwell. When celiac is diagnosed and a child adopts a gluten-free diet, those symptoms should resolve.
If your child does not have celiac disease, and you are considering a gluten-free diet because of a learning or behaviour concern, talk you your child’s doctor first.
What do my child’s teachers need to know?
If your child has celiac disease, let the school and teachers know. Describe how your child must follow a gluten-free diet and avoid cross contamination.
It should not be necessary to exclude children with celiac disease from any activities, since there are many ways to keep them safe. Have a communication system in place with your child’s teacher to share information, so that you have advance notice about special events involving food.
Other important points to discuss with teachers and school staff:
- Students with celiac disease should not share foods. They should only eat foods they have brought from home, or that they know for certain are gluten-free. Older children can be taught to read labels on packaged foods.
- Children should wash hands with soap and water before eating. Hand sanitizers are not adequate.
- Eating areas should be freshly cleaned and wiped down before lunch or snacks.
- Ask the teacher to contact you if they think (or know) that your child has ingested gluten.
Some craft materials may contain gluten, such as play-dough, papier maché, slime, finger paint, or pasta/cereal. Although gluten must be ingested to cause damage, young children may put unclean hands in their mouths, and cuticles and nail beds are hard to clean properly in the classroom.
Ask your child’s teacher what craft materials are used in the classroom, and whether they can be substituted with gluten-free products. If not, ask whether your child can wear gloves for those particular crafts.
Developed in collaboration with the Canadian Celiac Association (CCA) and the Education Committee of the CCA’s Calgary Chapter.
- GI Kids: Celiac Disease: includes video and gluten-free guide for families
- Growing Up Celiac Workbook
- Living gluten-free (Canadian Celiac Association)
- Beyond Celiac
- Celiac Disease (Hospital for Sick Children)
- Celiac Disease Center (University of Chicago)
Many communities across Canada have local celiac groups, which can help people find retailers and restaurants, and connect with other families living with the condition. The Canadian Celiac Association’s website has a list of chapters.
Reviewed by the following CPS committees
- Nutrition and Gastroenterology Committee
- Public Education Advisory Committee
Last updated: April 2020