A diagnosis of celiac disease or gluten sensitivity can come as a shock to many families. Often children are the first within the family to be identified as having this inherited disease.
The Canadian Celiac Association has created a resource that offers tips from fellow parents, information to help families navigate the gluten-free diet and advocate for their child.
Please share these tips with extended family, friends, daycare providers and teachers to help a celiac child feel included, positive and safe.
- Coping Strategies
- Navigating Celiac Disease at Home
- Navigating Celiac Disease Outside the Home
- Dietitian Tips
Dear Teachers, Educational Assistants, School Administrators, Volunteers, Camp Leaders, Daycare and Substitutes:
_____________________ (name of student) has a serious medical condition for which the only treatment is a strict gluten-free diet for life. Although celiac disease, dermatitis herpetiformis or Non-Celiac Gluten Sensitivity are not allergies, the treatment is the same. Gluten must be treated as a dangerous substance that has to be avoided. Any accidental ingestion of gluten may result in internal damage that accumulates over time as well as other more noticeable symptoms. Every person is different but common symptoms include diarrhea, abdominal pain, vomiting, rashes, nausea, even behavioural problems. These symptoms are not usually immediately apparent but may appear hours later or the next day. Some people have no outward symptoms at all, even though damage is occurring on the inside.
Since lunch is eaten at school and treats are often offered in classrooms and on field trips, you will need to be vigilant to help this student avoid harm. This requires systematic examination of every label on every food item, every time. There is no list of safe products or treats. If there is no list of ingredients, do not offer the item. In Canada, a product’s label must state exactly what the source of gluten in the product is. You are not looking for the word gluten. You are looking for any of the following:
- Barley (often in the form of extract or malt)
- Wheat (the most common source of gluten)
- Triticale (very rare)
The case for oats is complicated. The easiest scenario to avoid harm is to eliminate oats as well. If you see any of these ingredients in the list or in a precautionary “May Contain” statement, the item is not safe.
Gluten, especially from wheat, is very common in candies, cereal bars, trail mix, baked goods, cookies, in fact in almost all foods we think of as special treats. Never allow this student to consume any food made by another parent or staff member at home.
I would really appreciate advance notice if food is to be offered at any time to the whole class as a reward or celebration. When I know ahead of time, I can arrange to have an enjoyable and safe substitute for my child. It would also be great if I could leave a stash of gluten-free treats in a safe place in the classroom or staff room or office so that surprise parties don’t leave my child feeling left out. As you can imagine, this disease makes anxiety, social isolation and feelings of depression pretty common.
As you plan your activities and sometimes use food items in lessons, know that fresh fruits and vegetables are always safe.
In addition, here are some more important things to consider as you look after my child:
- Some classroom materials like Playdoh and glue may contain gluten. Although gluten needs to be eaten to cause harm, children will touch their mouths or lick their fingers or touch other items like pencils that then go in their mouths. Craft tables may be contaminated and then used for lunch. Please choose safe materials for the classroom.
- Encourage all children to wash their hands often, but especially this one.
- Be vigilant about food bullying. It happens.
- My child may need to rush to the bathroom with little notice. Please address this in a sensitive way in private, before it happens, perhaps by pre-arranging a signal. Always give permission to leave the room, without delay.
- My child may need to tell you something in private. Please help to avoid embarrassment.
- Never minimize this diagnosis to my child or others in the class. It is a lifelong condition for which there is no cure or alternate treatment.
Thank you for understanding that this is a difficult condition to manage. Don’t hesitate to contact me with any additional questions or concerns. Please make copies of this letter for each adult in the school who might be in a position to offer food or supervise lunch. Please also make sure there is a copy in the file you leave for a substitute teacher in the case of your absence. You can learn a great deal more about diagnosis, the conditions affected by gluten and the gluten-free diet at www.celiac.ca.
Here is my contact information:
Home phone: _________________________________________
Cell phone: ___________________________________________
Work phone: __________________________________________