Celiac disease: How to be a self-advocate and communicate about your health

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It can be challenging to share information about your celiac disease and gluten-free diet. Learn communication skills that can help you get the support you need to take care of yourself.

Key points

  • Advocating for yourself (or self-advocacy) means speaking up for yourself and communicating clearly and firmly to others about what you want and need.
  • When you practice self-advocacy, these skills become easier.
  • Identify your values so you know what is important to you and you can communicate this to others.
  • Practicing self-advocacy can help you get more support and live a life that includes the things that are most important to you.

What does self-advocacy mean?

Self-advocacy means:

  • speaking up for yourself
  • supporting yourself
  • 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. Knowing what is most important to you, including how you feel, can help you to advocate for yourself and create a life you want.

Self-advocacy: Getting started

Self-advocacy is a skill that you need to learn and practice, like cooking.

Expressing your wants and needs to others is one way to care for yourself.

The gluten-free diet is your treatment for celiac disease. This means you may need to share your diagnosis and/or explain your needs relating to the gluten-free diet to others. This might be easy at times and harder at other times. Practice can make it easier over time.

Below are some tools that can help you practice advocating for yourself in different situations.

Practice being a self-advocate

Instead of avoiding situations that could be challenging because of your gluten-free diet, practice sharing information about your celiac disease and how to be strictly gluten-free with friends, family, school and when eating out. Learning how to communicate effectively is part of the process.

It may sound simple, but before you can communicate what is important to you—your values—you need to know what is important to you.

You may value seeing friends and know that when you get sick due to gluten exposure, you miss out on seeing them. You may also value performing at your best for school or sports. Values will look different for each of us. Once you recognize your values, you can then communicate them to others, starting with people who make you feel secure and comfortable. To learn more about how to determine what your values are, check out the click-through interactive in the Identifying your values page.

MyHealth 3 Sentence Summary

The MyHealth 3 Sentence Summary is one practical approach that teens are encouraged to use as part of living with a condition, not only to prepare to transition to adult care but also to communicate your needs in any area of life. It is a three-step approach that teaches you how to summarize and communicate your health needs or other important information to others, including your health-care team, teachers at school, a manager at work or a server at a restaurant.

First, consider what you feel comfortable sharing with others. Many people are naturally curious and will ask lots of questions. Make note of what you are comfortable (or uncomfortable) with sharing. This can help you avoid getting stuck in a conversation that may lead you to share personal information you did not want to. You do not owe anybody anything, and you do not need to tell someone personal information if you do not want to. However, it can be helpful to provide some details to help someone understand your needs and where you are coming from.

Creating the MyHealth 3 Sentence Summary

Sentence 1: Your diagnosis and brief medical history (only include the parts of your medical history that make sense for the situation and align with what you are comfortable sharing).

Sentence 2: Your treatment plan (for celiac disease, the gluten-free diet is the treatment plan).

Sentence 3: Your question(s) and/or needs.

Here is an example of a person with celiac disease using the MyHealth 3 Sentence Summary when talking to a food server at a restaurant:

"Hi, I'm Nicole and I have celiac disease. I need to follow a strict gluten-free diet for my celiac disease. I have questions about your gluten-free pizza and how it's prepared."

To learn more about how to communicate about your gluten-free diet when eating out, please see "Communicating about your gluten-free diet: Eating out".

Self-advocacy: Health care

The goal of self-advocacy in health care is for you to think about your medical needs and work with your health-care team to create a plan that achieves what you need. This means you will be involved in making decisions. As you get older, your parents or caregivers may become less involved in your health care. It can be helpful to start to practice self-advocacy while you are still supported by your paediatric celiac team and your parents or caregivers.

Self-advocacy and your social life

Think about a time when a friend brought you something to eat or drink. Maybe you met them for a bike ride on a hot summer day or at the mall to go shop together. It was generous of your friend to bring you something to eat and maybe you were hungry, but what happens when you don't know if a food is gluten-free? Your friend may not have remembered that you need to follow a strict gluten-free diet. What can you say to your friend?

Using the MyHealth 3 Sentence Summary, you can start by reminding your friend that you have celiac disease and need that you need gluten-free foods to make sure you stay healthy. Then, ask your friend more questions about the food to see if it is a safe gluten-free food for your celiac disease. You could use this as an opportunity to teach your friend about life with celiac disease and the things you need to consider. Here’s an example:

"Thanks for thinking of me. That’s so thoughtful and I am hungry, so I appreciate it. I do have celiac disease, so I need to ask if this is gluten-free. Do you know where this was made and if it came in contact with gluten? I know it may seem like an odd question, but I need to know these details to figure out whether I can eat it safely.”

You may not want to disappoint others by not eating what they brought you, but letting others know what you need, especially those who are close to you, is a great place to start. In the scenario above, you can acknowledge your friend and let them know that you appreciate their thoughtfulness, even if it turns out that you don’t feel confident that the food they brought you is gluten-free. For example, you could say, “Thanks for thinking of me and bringing me this food, but I better stick to foods I know I can have safely.”

You may also be less tempted to eat something that might not be safe for you if you remember to carry gluten-free snacks with you. Planning ahead by bringing snacks is one way to take care of yourself.

Self-advocacy and your school life

Food, class activities and eating with classmates can be another area to navigate. Imagine your art teacher plans to do a paper mâché art project with your class. The day before, your art teacher hands out instructions on how to prepare the paper mâché and you notice wheat flour is used to make the paste. What can you do to make sure the activity is safe for you?

Part of being a self-advocate is educating others, sharing personal information about your wants and needs, problem-solving and planning for events or difficult situations. In this case, you can approach the art teacher to share your concerns about having celiac disease and being exposed to wheat flour. You may explain to the art teacher that using flour creates a high-risk situation for people living with celiac disease as it can spread easily in the air and throughout a room. You can communicate to your art teacher that you would feel safer if gluten-free flours were used and propose that the class uses corn starch or gluten-free rice flour in place of wheat flour.

Summary of the steps you can take to care for yourself

  • Know what is important to you. Think about or write down what is important to you. What are some things you don't want to mis out on because of your celiac disease and gluten-free diet?
  • Plan. Decide ahead of time what information you feel comfortable sharing in different situations or with different people about your celiac disease or gluten-free diet.
  • Communicate clearly with others about your celiac disease or gluten-free diet. Try out the MyHealth 3 Sentence Summary ahead of time. Either say it aloud or write it down.
  • Get the information you need ahead of time and ask questions. For example, if you're going out to eat with friends, find out where they plan to order food and look at the menu ahead of time to find gluten-free options.
  • If you are feeling stressed or overwhelmed, reach out to someone you trust. Tell them how you feel and get some support. You can also connect with Kids Help Phone online, by text or phone to access services that can help you with your mental health and well-being.
Last updated: July 14th 2023