Ask The Expert: How Will Celiac Disease Affect My Child's Life?


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If your child is diagnosed with Celiac disease, an auto-immune disorder in which those diagnosed cannot tolerate gluten, their world will change, especially if they used to eat foods with gluten in them. We interviewed Steve Distefano who owns Strictly Gluten Free, a gluten-free retail/wholesale marketplace, with his wife Angela, for advice for parents on how to prevent contamination of gluten-free foods and maintain a gluten-free lifestyle.

girl eating cereal outsideWhat advice do you have for a parent whose child has just been diagnosed with Celiac disease?

I always say you should speak with a medical professional.

If it was a child that was never introduced to gluten, it's easier, but if a child was diagnosed later, their world has changed. From the child’s perspective, they feel they have to have the approval of their peers...they get quite upset when they’re in a social event—let’s say a kid has a birthday and their parents bring in a cake—they might not be able to take part in that.

The child might go through stages in the very beginning where he's going to be upset and overwhelmed—the kid might not want to eat.

But because they have to pay attention to what they can and cannot eat, they’re going to have a healthier lifestyle—they’re going to be able to question and analyze things on a level other children are not. They’re educating themselves because they were forced to do that, but now it’s going to make them think about things in a different sense.

What should parents look for to avoid contamination of gluten-free foods?

You have to see what symptoms there are—that’s how they'll be able to determine that they know when they have cross contamination. Certain kids are fortunate enough to have symptoms—when you’re asymptomatic you have no idea when damage is being done.

You have to look at the cross contamination factors—you have to have a separate toaster in the household, separate condiments, toothpaste, vitamin supplements—gluten can come in many different forms.

You need to have gluten free tubs of each condiment to avoid cross contamination. If you’re making pasta—regular pasta and gluten free pasta—you can’t use the same ladle on both bowls.

If you’re passing bread, you’ll want to pass it behind the child’s back, not over their plate.

For holidays and parties, they’ll understand that their own family has an understanding of a gluten-free lifestyle, but others might not…if little Joey comes along and happens to grab the mashed potatoes after someone took mashed potatoes and touched bread, those mashed potatoes could be contaminated.

You can make it fun—they’re going to be able to be the first one to eat at all parties, so they are able to enjoy your food without it being contaminated.

How can parents help their kids maintain a gluten-free diet?

A lot of picking out the right foods is visual. Kids tend to be very visual when they decide what they want. We'll have them come in to the store and pick out certain things that they like.

Over time, I’ve seen a difference in a lot of kids. Kids come back to the store and you can see changes. Their outlook is completely different: They're more confident; they have more energy.

They have to understand about building a proper foundation—you have to build a proper foundation about how to maintain a lifestyle. Parents and their kids should work to build an awareness. Once you have an understanding, it becomes second nature.


Steve Distefano is an advocate and well-known figure within the glutef-free community. While Steve does not have Celiac diesase, his wife and sister-in-law were diagnosed with the auto-immune disorder in 2008. Along with his wife Angela, Steve created Strictly Gluten Free, a gluten-free retail/wholesale marketplace. Steve also sits on the board of directors for the Kicking 4 Celiac Foundation, the Suffolk County Celiacs, and the Natural Products Association.


Also see: 

New Cookbooks For Picky Eaters, Busy Moms, and Gluten-Free Families

The Gluten-Free Diet for Children With Autism

How Can I Keep My Kids Eating Healthy During the Holidays?


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