Help! My Kid Has Celiac – Now What?

So, your kiddo just got diagnosed with celiac disease. First of all, take a deep breath. We know it feels like you’ve just been handed a one-way ticket to overwhelm with no return flight. But we promise—this journey gets easier, and before long, you'll be a pro at deciphering ingredient labels and interrogating waitstaff. And the best part? They are going to feel so much better!

Here’s a guide to help you figure out what to do next and how to keep your little gluten-free warrior safe, happy, and healthy.

*Heads up, gluten-free friends! This post may contains affiliate links, which means if you click and buy, we might earn enough to fund our kid’s endless supply of gluten-free snacks. Don’t worry, though—we only recommend stuff that’s safe, awesome, and will bring fun and joy back!.

Gluten Free Cookies Rock!

Step 1: Find a Great Gastroenterologist (Even If It's Virtual!)

A celiac diagnosis isn’t something you want to handle solo. You need a pediatric gastroenterologist who specializes in celiac disease. Ideally, someone who eats gluten-free science for breakfast.

Why You Need a Celiac Specialist:

Not all gastroenterologists are created equal when it comes to celiac disease. A specialist knows that managing celiac isn’t just about avoiding gluten—they’ll stay on top of essential tests like a bone density scan to check for early osteoporosis (because malabsorption is sneaky) and can identify common co-conditions like SIBO (small intestinal bacterial overgrowth), which often tags along uninvited. A regular GI might miss these crucial pieces, leaving your kiddo vulnerable to long-term complications. So yeah, this isn’t the time to settle for “good enough!”But let’s be real—finding one of those in your area can feel like searching for a gluten-free croissant that doesn’t taste like cardboard.

Pro Tip:

If there’s no local option, don’t panic! Telemedicine has come a LONG way. Many top-notch pediatric gastroenterologists offer virtual consultations now (coupled with local labwork), which means you can snag expert advice without leaving your couch (bonus: no wrestling your child into real clothes).

• Start by checking with major hospitals or research centers specializing in celiac.

• The Celiac Disease Foundation and Beyond Celiac websites have directories and resources for finding doctors.

• If insurance is a concern, ask if they participate in Medicaid or CHIP programs to cover costs.

Step 2: Go Gluten-Free – As a Family!

Sure, it’s possible to keep gluten in the house and separate everything, but unless you’re ready to turn your kitchen into a gluten-free Fort Knox, the safest bet is to go all in as a family. Why?

• Cross-contamination is sneaky. Even a few crumbs can trigger a reaction.

• Morale boost! Your kid won’t feel singled out or deprived if the whole family’s munching on the same delicious (gluten-free) meals.

Here's an article on how to turn your kitchen into a totally Gluten Free Zone.

Pro Tip:

If going completely gluten-free isn’t feasible, at least designate a “gluten-free zone” in the kitchen, complete with separate cutting boards, toaster, and utensils. And if your kid’s like mine and treats the counter like a science experiment, you’ll want to wipe down surfaces like a crime scene detective after every meal. Here's an article on how to co-exist safely with your little celiac in a shared kitchen.

Step 3: Beware of Play-Doh and Other Sneaky Gluten Traps

Listen, I hate to be the bearer of bad news, but Play-Doh? It’s basically a gluten bomb waiting to happen. Standard Play-Doh contains wheat, which means it’s a big no-no for celiac kiddos. Trust me you don't want it on your counters, tables, floors and their hands. But don’t worry—there are awesome gluten-free alternatives out there that won’t leave your kiddo (or you) feeling left out of the fun.

Step 4: Know Your Rights – 504 Plans to the Rescue

If your child is in school, it’s time to get familiar with the magic words: 504 Plan.Under Section 504 of the Rehabilitation Act, celiac disease is considered a disability, which means your child is entitled to accommodations to ensure a safe, gluten-free environment.

What Should You Include in a 504 Plan?

• Gluten-free meals or safe space for packed lunches.

• No gluten-containing play materials (hello, Play-Doh again 👀).

• Clear protocols for school parties, field trips, and class projects.

Pro Tip:

Be firm but friendly when advocating for your child’s needs. You’re not asking for favors—you’re ensuring they can thrive in a safe, inclusive environment.

Step 5: Restock the Pantry (and Your Sanity)

It’s time to purge the pantry like a gluten detective. Say goodbye to sneaky gluten in sauces, seasonings, and even some candy (I’m looking at you, licorice). Replace them with safe gluten-free alternatives. And why not check out some of our favorite gluten free baking mixes. Nothing is more cheering than a fresh-baked blueberry muffin.

Step 6: Join the Gluten-Free Squad

You’re not alone in this journey. There’s a whole community of gluten-free parents ready to share tips and swap recipes

• Join Facebook groups or forums dedicated to gluten-free parenting.

• Follow gluten-free bloggers and Instagram accounts (hey, we’re pretty cool!).

Final Words of Encouragement after a Celiac Diagnosis for Kids

This might feel overwhelming right now, but trust me—you’re building a healthier, happier future for your child. Plus, before you know it, you’ll be whipping up gluten-free cupcakes that make the other PTA moms jealous. So, take it one step at a time, and remember a Celiac Diagnosis for Kids is a challenge but you've got this and they've got you!