How to help your child communicate about celiac disease

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Learn how to support your child develop communications skills to discuss celiac disease and the strict gluten-free diet, as well as advocate for their medical and dietary needs.

Key points

  • Children need time and practice to learn communication skills, such as self-advocacy (the ability to speak and act for themselves).
  • There are communication tools and steps that you can learn and practice to support self-advocacy in your child.
  • Being a strong self-advocate in managing their celiac disease can help build your child’s overall confidence as they become more independent.

Since being diagnosed with celiac disease, your child may have depended on you to communicate about celiac disease and their health-care needs, or they may have been the one to do that for themselves. No matter what stage your child is at, from toddler to teen, continuing to develop communication skills is important. As your child becomes more independent, there will be more situations in which they will need to communicate their needs and practice self-advocacy.

What does self-advocacy mean?

Self-advocacy means speaking up for yourself, supporting yourself and making decisions that are in your own best interests. This includes firmly asking for what you need and want. Being a self-advocate can be hard at times. It can be especially difficult for children or teens with celiac disease who may not want to stand out among their peers because of their diagnosis, medical needs and/or the strict gluten-free diet.

Your child may express other emotions, such as pity or guilt (feeling like a burden). Learning how to communicate and advocate for themselves can help your child manage some of these feelings.

Self-advocacy skills come in many forms, such as talking or taking action to try to problem solve. Some examples of self-advocacy include:

  • Asking questions or taking action to get information. For example, your child might ask the manager of the snack shop at school if they carry gluten free snacks.
  • Educating others. When your child is at their best friend’s house after school, they can let the caregiver know they have celiac disease and that people with celiac disease must eat a strict gluten-free diet.
  • Sharing personal information about wants or needs using “I” statements. For example, when offered a snack, your child says, “I can have the apple and peanut butter for a snack but not the crackers because I only eat gluten-free foods for my celiac disease.”
  • Problem solving and planning for events or challenging situations. Plan ahead for events that might be more challenging than others when following a strict gluten-free diet, such as eating out, travelling or attending a special event such as a birthday party.

How to help your child develop self-advocacy skills

Learning to self-advocate can help your child’s confidence and prepare them for later stages in life. How you prepare your child to ask questions and share information about their celiac disease will be specific to your child. The goal is to encourage and challenge your child around self-advocacy, while still supporting their growth in communication. To get started, you can observe your child in social situations to understand how much practice and encouragement they need to communicate well independently.

For example, when a friend or family member offers your child food and a drink, has your child been able to ask the appropriate questions about whether it is safe for them to consume? If so, the next step may be to encourage them to practice this same skill in a new situation, such as when eating out. Even if the step is small or your child makes mistakes as they learn, do not feel discouraged. Encouraging your child to speak and act for themselves from time to time will help them learn to communicate and do tasks on their own.

Encourage your child to try some of the following tasks with your support:

  • Ask questions when they do not understand what their health-care team, teacher or other important people in their life have said.
  • Share with their friends, family or peers that they have celiac disease and need to follow a strict gluten-free diet.
  • Call or email ahead before going to a new place, for example on a school field trip, to find out what gluten-free options are available to eat.
  • It might help to introduce the MyHealth 3 Sentence Summary to your child and have them practice using it with you before using it in real-life situations.

Acknowledge your child when you notice them advocating for themselves, problem solving or showing confidence. This helps to reinforce communication skills and build confidence. Encouraging self-advocacy in your child also supports your child’s health and their transition into adulthood.

Last updated: June 27th 2023