Talking to Kids About Celiac Disease

PARENTING

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“Maybe you’ve mastered eating gluten-free as a result of a celiac diagnosis. Maybe you’re still figuring it out. Maybe you have non-celiac gluten sensitivity (NCGS), and are trying to navigate the medically mysterious lands between having celiac and not having celiac. Whatever your situation, you might agree that it’s not always easy to maintain a gluten-free diet.

Now imagine what it’s like to be a gluten-free kid. Be wary of pasta necklaces and play dough in art class. Sit there politely while everyone else eats cupcakes on the first day of school. Don’t eat the pizza at the birthday party (or the cake).

If you have (or know of) a child who is gluten-free, you might know how hard it can be for kids to cope with their dietary restrictions. Thankfully, there are ways to make it easier on your child.

1) Turn it into an adventure.

Being a child who is gluten-free can be especially frustrating around the holidays, when cookies and candy are shared in abundance in school.

If your child is having a hard time accepting that she is gluten-free because it makes her feel different, check out “The Adventures of Celia Kaye,” a kids’ book that I wrote about a little girl named Celia Kaye who has something she thinks she needs to hide. She goes to great lengths to keep her mysterious secret concealed from her friends by becoming a master storyteller.

This book is designed to help kids cope with and understand not only celiac disease, but all differences, and goes beyond giving definitions and explanations–your child will follow Celia Kaye on her adventures as she creates stories about her limitations using unlimited imagination.

2) Talk to your child’s teachers/caretakers so that your child has an ally when you’re not around.

It’s not only important that your child knows to screen for gluten in foods, but it’s also important for those responsible for your child to understand what gluten-free really means. Wheat-free doesn’t necessarily mean gluten-free.

3) Check out a support organization

The Gluten Intolerance Group offers programs that allow your kid to be a kid–not a “gluten-free kid.” Between events, camps, and pizza kitchen tours organized specifically with gluten-free needs in mind, kids don’t have to worry about being different.

Gluten Intolerance Group of North America gluten.net  contact [email protected]

Healthy Villi Support Group  www.healthyvilli.org  or contact [email protected] 

Celiac Disease Foundation www.celiac.org or contact http://bit.ly/ContactCDF 

Celiac Sprue Association www.csaceliacs.org or [email protected] 

National Foundation for Celiac Awareness www.celiaccentral.org or contact http://bit.ly/ContactNFCA

Canadian Celiac Association www.celiac.ca or contact [email protected] 1-800-363-7296

4) Help your child understand that gluten-free food is real food.

It can be especially difficult for very young children with celiac disease to understand why they can’t eat certain foods. If glutenous foods are considered the “normal” version, then aren’t the gluten-free versions abnormal?

Brands like Smart Flour Foods, Russo’s New York Pizzeria, and Lucy’s cookies are not only trying to make gluten-free foods, but they are trying to make gluten-free foods that appeal to everyone–not just those with celiac.

Anthony Russo of Russo’s New York Pizzeria says that families order his gluten-free pizza because it tastes so good even if there is only one child in the family with celiac. That way, that child doesn’t need to order a special pizza, and no one else feels like they aren’t getting “the real thing.”

Dr. Lucy Gibney of Lucy’s cookies uses nutrient-dense ingredients to create her cookies, which she thinks of as “good food,” not necessarily “gluten-free food,” even though, yes, her cookies are gluten-free.

It can be hard being different, and it can be hard being gluten-free. For kids, it’s even harder. Knowing how to navigate celiac disease or other food intolerances can help your kid feel like a kid — not a gluten-free kid.

https://theceliacscene.com/wp-content/uploads/2015/11/Celia-Kaye.jpeg

Celia Kaye is a little girl who has something she thinks she needs to hide. She goes to great lengths to keep her mysterious secret concealed from her friends by becoming a master storyteller.

It is often difficult and frustrating for children to navigate food allergies and intolerances. This book is designed to help kids cope with and understand not only celiac disease, but all differences.

Kids will follow Celia Kaye on her adventures as she creates stories about her limitations using unlimited imagination.

Celia Kaye is the name under which writer-filmmaker Kaitlin Puccio pens articles about her experience with gluten sensitivity. Kaitlin has written a children’s book, “The Adventures of Celia Kaye,” on celiac and gluten sensitivity for the Celia Kaye lifestyle brand, and has been a contributor to MindBodyGreen. Follow her onTwitter, like her on Facebook, and visit her at celiakaye.com

Illustrated by Grammy-nominee Sarah Larnach