Let’s Talk Celiac Disease
My child was just diagnosed with celiac disease-what do I tell them?
At this point in the process, your child has probably already undergone blood work and likely an endoscopy to confirm the celiac diagnosis. You as a parent, probably already went down that “Google” rabbit hole of trying to find out as much information as you could in anticipation of the news. If you haven’t met with your GI team yet to discuss next steps, here’s a few thoughts on how you can start preparing your child for a gluten free diet.
Review the most recent events
If your child is at an age where they didn’t ask why they had to get an endoscopy but understand some of their symptoms, start there. Connect how they were feeling (i.e. having tummy pain, feeling tired, losing weight, etc.) with why they required tests to figure out what was going on in their body.
2. Endoscopy Education
An endoscopy is often encouraged by your GI provider because it allows providers to have an in depth look at the small intestine, specifically the villi within the small intestine. After they are able to assess the villi for damage, they are able to confirm your child has celiac.
You want your child to really understand why this procedure was important because it can make or break their cooperation with the GF diet. Here is an example of some of the language I would use to discuss it- “your doctors took some pictures of your body while you were asleep; some of the pictures were of tiny finger-like things called villi that we all have in our bodies. These villi found in your belly (or small intestine) were sick. When they are not working like they should, you may feel tired, lose weight, have headaches, etc.”
3. Make the Connection Between Food & Celiac Disease
Talk to your child about the impact that certain foods they love have on their villi. Most of the time fan favorites are pizza, pasta, bagels, cake…the list goes on but specifically note, “some of your favorite foods have gluten, which is making your body feel sick.” To help them to feel better, they will have to make some changes to their diet. When they are consistent with the GF diet, their small intestine has the ability to heal.
4. Go Over the Treatment Plan
First, validate how hard it has been for your child to feel icky and unwell; Try saying something like, “we are so relieved to know what is going on so we can help your body to feel better again.” Discuss ways to include your child in this transition such as bringing them to the grocery store so they can pick out some new foods or asking them what they think might be nice snacks or meals to try to substitute with the old ones. Then discuss how they can protect themselves both in and out of the home on a very basic level. For example, go over the importance of not sharing food at school or accepting food from others at this time because they don’t know what ingredients are in the food. With there being so many protective factors required for those with celiac disease, it can be helpful to first focus on what meal time looks like at home versus at school, restaurants, etc.
5. It Takes Time
Remind your child that it can take time for them to feel 100% again if they’re experiencing gastrointestinal symptoms. Moving to a GF diet is not one of those overnight cures but if your child does seem to have recurring symptoms after a month or so, I encourage you to follow up with your GI doctor. Regardless of your child’s age at time of diagnosis, I don’t think it’s helpful to go into all the nitty gritty details in your first conversation with them about celiac disease. It can be overwhelming to learn about cross contamination and the concerns around “being glutened.” After you go over some of the basics like I mentioned, the next sit down conversation you have should be centered around food safety. Above all, follow your child’s lead to see when they’re tapping out and unable to take in more information.