Tip-A-Day for May: Celiac Awareness Month - #11

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Tip-yellow postit # 11: Survivor! Celiac Edition

Sorry, I couldn’t help myself. I thought it might be time to think about some of the survival skills your child – with or without Down syndrome – may need to develop if Celiac disease is in the picture.

One of my favorite learning experiences in the last 10 years came from a young lady with Down syndrome who has Celiac disease, before the big gluten-free product boom, and just before Andy (my son with Down syndrome) was diagnosed with Celiac. She lives in Portland, Maine and my role was to help set up the kitchens and support techniques for students in a post-secondary program that would open that fall.  This gal has been following a gluten-free diet for some time. Her Mom had an exhaustive notebook filled with information about products, stores, and more. Her Mom sent us to the store so she could show me the foods she likes to have on hand. It was amazing. I learned more about reading labels certified gluten free symbol
and finding gluten-free specialty products from this young woman in one hour than I have learned anywhere else.

My point? It is possible for your child, with or without Down syndrome, to do this!  The challenge is the same as it is for everyone: temptation and peer pressure. We’ll talk about that later.

How did this young woman develop these skills? With education. Keep your child’s learning style in mind and begin to teach them the words to look for. The good news is that gluten-free products are more common now. This means you can begin by pointing out the words, “Gluten Free” on labels and packaging. For example, when looking at a box of two different pizzas, which box says “Gluten Free”?  That will go a long way.

Survival foods, however, don’t come in a box. For me, these are the foods that one can count on without reading a label. Knowing what will always be safe will make it easier for your child to navigate an unexpected situation. What are known safe foods?  Some ideas: fresh fruits and vegetables (though not dips!), meats that are not breaded or marinated, milk, rice, plain yogurt (the flavoring is the culprit for concern), and most cheeses. You can do a lot with that list. Think through your child’s favorite foods from those categories to create a feeling that there’s always something “safe” to eat.

If you have been doing this a while, what did you do, or are you doing, to teach your child about their gluten-free lifestyle? Share your ideas in the comment section or on my Facebook page. Sharing is how we all learn! There's no one way to do this.

Remember, this is the Survivor!  version of gluten-free.  We all need survival skills sometimes!

Until tomorrow,

joan sig



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