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Your Child Has Just Been Diagnosed With Celiac Disease

First Steps For Parents


Updated July 16, 2008

Maybe your child has been sick for a long time and no one could figure out why -- until now. Or maybe the diagnosis of celiac disease has come out of the blue. Either way, you've just learned that you need to protect your child from an ingredient that hides in literally thousands of food products: gluten. You're not alone, though. Here are some steps and resources to get you started.

1. Read "Helping the Celiac Child Cope with a Gluten-Free Diet" on the website of the Canadian Celiac Association Edmonton Chapter, for help with meal management, home and school activities, and snack ideas. Also take a look at our article, "You Need to Be Gluten Free. Now What?"

2. Read one or more of the following books written especially for and about kids with celiac disease:

  • Kids with Celiac Disease: A Family Guide to Raising Happy, Healthy, Gluten-Free Children by Donna Korn
  • Wheat-Free, Gluten-Free Cookbook for Kids and Busy Adults, by Connie Sarros
  • Eating Gluten-Free With Emily: A Story For Children With Celiac Disease, by Bonnie J. Kruszka
  • The GF Kid: A Celiac Disease Survival Guide, by Melissa London
  • Gluten-Free Friends: An Activity Book for Kids, by Nancy Patin Falini
  • Incredible Edible Gluten-Free Food for Kids: 150 Family-Tested Recipes, by Sheri L. Sanderson

3. Shop for gluten-free kid-friendly snack foods and staples.

4. Explain the importance of the gluten-free diet to everyone who prepares food for your child -- for example, all household members, your child's relatives, your friends and the parents of your child's friends, your child's caregivers, and your child's school. Share literature about the gluten-free diet with them. (In addition to their roles in helping to care for your child, another reason to tell your family is that there's a strong genetic component to celiac disease. If your child has the disease, other relatives might unknowingly have it too.)

5. Try some kid-friendly gluten-free recipes and suggestions for adapting your family's old favorites.

6. Join (or start) a Raising Our Celiac Kids (R.O.C.K.) support group.

7. Visit the websites of the major celiac disease organizations for more information and ideas.

Do you have suggestions for parents of children with celiac disease? Please share them in our forum.

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