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When Your Kid Is Diagnosed with Celiac Disease

Just before the holidays, my teenage son was diagnosed with celiac disease, an allergy to the gluten protein found in wheat, rye and barley. Exposure can damage his intestines, causing nutrient deficiency and disease.

when your child is diagnosed with celiac diseaseThe good news is, we know the problem and can fix it with dietary changes. The tough part is that change is hard, especially when so much of our family time, our socializing, our culture is spent gathering around food: pasta nights, birthday cakes, snow-day soft pretzels, Sunday morning doughnuts, Christmas cookies, pizza Fridays, the list goes on.

How can something so good be so bad?

We mourn the old way and try to quickly move on, figuring out the words to watch for — a bit like being dropped in a foreign country and learning the language on the fly.

But, we are in good gluten-free company. About one in 100 people has celiac, and GF living has become a more popular choice for many people even without allergies. A quick search of Facebook shows dozens of gluten-free support and recipe groups with thousands of members.

Our first follow-up appointment involved sitting down with a pediatric nutritionist who shared with us some valuable advice from the Children’s Digestive Health and Nutrition Foundation.

Shop the perimeter of the grocery store

Here’s where we find naturally GF foods: fresh produce, meat, poultry, seafood, eggs and dairy products. The inner aisles tend to have more processed foods — with longer lists of ingredients to examine. But they are also home to  ­some items considered pantry staples, such as corn tortillas, plain rice, dried beans and legumes and peanut butter.

Try the Asian foods aisle for rice noodles and crackers and the organic specialty section for gluten-free pastas and alternative flours. More grocery stores now have dedicated GF aisles and selections, but they can prove to be budget busters — some GF foods cost up to 10 times as much as their standard counterparts.

Read all labels

Watching ingredients is now much easier than it used to be. In 2006, the Food Allergen Labeling and Consumer Act began requiring that companies clearly identify the eight most prevalent food allergens: eggs, fish, milk, peanuts, shellfish, soybeans, tree nuts and wheat. Keep reading the labels, because ingredients change from time to time.

Don’t be afraid to go out

But do your homework. Review menus, call ahead, speak up early and state clearly that you have a gluten allergy. Never assume that foods are safe. Some restaurants add pancake batter to omelets or fry French fries in the same fryer as breaded items. Ask how foods are prepared.

when your child is diagnosed with celiac diseaseBeware of cross-contamination

At home, keep separate peanut butter, mayo and jelly containers to avoid passing crumbs. Have a separate GF toaster and cutting board. Make sure that utensils and pans are thoroughly cleaned between uses.

Wisdom of others

Know what’s awesome? Parents who have tackled obstacles in their own parenting and want to help newbies find support and success. Kristen Gustavson began her GF journey when her daughter was diagnosed with celiac 15 years ago. Becky Engel and one of her sons have been GF for 16 years, and her other two children joined them when also diagnosed with celiac about five years ago. These terrific expert mamas stepped right up to help answer my questions about going GF.

What’s the best way to handle social gatherings and restaurants?

Kristen: Never assume that there will be safe things for your child to eat. Bring food. I may be asked to bring a dessert to a friend’s house, but I’ll also bring a cheese and crackers or a fruit platter or chips and salsa, so I know there will be a few things we can enjoy. We are always showing up to parties with a tub of ice cream or Italian ices.

At family functions, ask to see food containers so you can read labels. When you go to a restaurant, self-advocate. We almost always ask to speak to the chef. The GF trend has been helpful to the celiac community in creating more mainstream options.

The downside is that many restaurants are only gluten friendly and not celiac friendly. Josie often gets asked if it’s an allergy or a choice. She laughs and says, “Why would I choose to eat this way? I’m a kid!”

What accommodations did you make for school activities?

Becky: I made a set of GF cupcakes and froze them for each of my children in the school nurse’s office freezer. On days that there was a special treat for a birthday or an activity, my student would go to the nurse in the morning to have a cupcake defrosted by the time of the party.

I tried to be a room parent or a volunteer for parties when my children were in elementary school. That way I could make items for all that I knew my kids could eat. I often make treats for all to share and label them gluten-free. This has been a good way to handle situations as my children are older.

What has been the biggest hurdle you’ve faced?

Kristen: So far, it has been packing school lunches. You take for granted when you could slap some peanut butter and jelly on bread and call it lunch. Most GF bread doesn’t taste that great unless it’s toasted. Every year, we try new things, but for the most part, school lunch is tons of little GF snacks — nuts, fruit, veggies and hummus, chips and guacamole, cheese and salami and cookies.

Was the transition period difficult, going gluten free?

Becky: At first, for my first son diagnosed, yes. He was already a picky eater, and we had to try many substitutes before we found the right foods. However, once his body healed from the celiac damage, he became much less picky. I think that the gluten actually was causing some of his quirky food tastes. When my other two children became GF, it was not as difficult. We already knew the ropes and what recipes were good.

Have you found some favorite kid-friendly GF foods?

Kristen: There are tons of GF options, but some taste horrible. Look online for support pages and ask about GF foods. We order some of our favorite staples on Amazon (including Kashi Organic Indigo Morning cereal and Barilla gluten-free oven-ready lasagne noodles). We love Trader Joe’s GF Everything bagels. We eat a lot of Chick-fil-A, too. Not all GF foods are healthy, but you want to be able to offer some fun “kid” foods once in a while. Lots of trial and error may be required.

What advice do you wish you had been given?

Becky: See gluten as a black-and-white issue, with no gray area. From the very beginning, look at every ingredient, even the ones with the smallest percentage in the item, and do not ever eat anything with even a small amount of gluten in it. It makes things easier in the long run.

Teach your child to be confident saying that they have celiac. As they get older, if they’re not confident in this difference, it only becomes more difficult, as teens hate to have something about themselves that makes them different. It’s amazing, though, when they do share their story with others, how many other people are dealing with the same thing.

Once you go GF, your child’s body will heal and be as healthy as a person without celiac. Someone once told me it’s the best autoimmune disease that you can have because you can actually heal with GF diet.

Our family

I took Kristen’s advice at our big family holiday feast — two celiac-friendly sides and a GF cheesecake. They were a hit with everyone, and my son did not feel ripped off. My sister made some ridiculously good flourless brownies. I’m increasingly searching the Web and buying cookbooks and stocking up on new pantry staples like it’s my new hobby … because it sort of is.

As my son is now applying to colleges, we’re taking into consideration whether the school cafeterias are celiac safe. I am encouraging him to do more cooking to prepare him for having more control over his food intake. It’s a lot, and I know it’s going to feel intimidating for a while. But we are digesting it all and assimilating into this new normal. For that, and the prospect of healthier days ahead, I am truly thankful.

Helpful Resources

• American Dietetic Association
• Celiac Disease and Gluten-free Resource
• Center for Celiac Research, University of Maryland School of Medicine
• Children’s Digestive Health and Nutrition Foundation
• Celiac Disease Foundation

Handy mobile apps:

• The Gluten Free Scanner lets you scan product bar codes to check for gluten risk.
• Find Me Gluten Free helps you locate safe local restaurant options on the go.

Written by: Courtney McGee