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Raising a child with celiac disease

by Allison Lachowitz, RD, CSP, LDN, CNSC

When your child gets a diagnosis of celiac disease (CD), there are some positives: You finally know why your child has been sick, and you know your child can feel better without surgery or medicine.

But a diagnosis of CD also brings a challenge: How do you change your child's diet to keep him healthy and happy? It's definitely possible, but it requires work not just by you and your child, but by everybody in your household.

I love it when families of recently diagnosed CD patients come to see me. Making the entire family understand the disease and commit to fighting it makes it much easier to help the child. A brother or sister needs to know the importance of keeping gluten away from the sibling, and what could happen if they don't.

I always start with an explainer so that the whole family can understand CD. If you need to explain celiac disease to your children, use simple language like this:

As your body digests food, that food moves from your stomach into your small intestine. The small intestine removes nutrients from the food so your body can use those nutrients to grow and function. When you have celiac disease your, small intestine can't handle foods that contain a substance called gluten. If you have gluten, you might feel sick and your small intestine might not be able to remove the food nutrients your body needs. That's why when you have celiac disease, you need to avoid foods that contain gluten.

Gluten is found in wheat, rye and barley. Those ingredients are used to make things like bread, cereal, cakes and cookies, and sometimes they're hidden in other foods. There are ways to make these foods without using gluten. You just need to make sure you're eating the right ones.

It's important that families understand they need to be careful to avoid cross-contamination with gluten-containing ingredients during food preparation. It might be necessary to use a separate toaster oven, skillet, or dedicated cutting board and knife for gluten-free foods. 

Parents should be on the lookout for non-food items that might be formulated with gluten. These include some personal hygiene products and cosmetics such as toothpaste, body lotion and lip balm. Any product that could come into contact with your hands or mouth could inadvertently transfer gluten into the body. If families, especially siblings, understand the level of sensitivity, everyone will be more likely to help the patient stay well. 

I won't tell you that it's easy to start a gluten-free lifestyle. But once we figure out what items your family needs to avoid, and once we find safe replacements for those items, it will become much easier to keep your CD patient well and happy!