Wondering what you need to do next after your child’s been diagnosed with celiac disease? Read our top tips and next steps to get you started on a gluten-free lifestyle.
My 7-year-old would sometimes complain of stomach pain here and there while sitting on the toilet. At first, it seemed like nothing major since he only mentioned it a handful of times. He was a picky eater, rarely eating all his veggies and always asking for more desserts. The complaints were infrequent so I attributed them to too many sweets or unhealthy food choices, typical of a picky-eater.
Celiac NEVER crossed my mind. I only thought to mention it in our family medical history after a close family member was having GI issues days before our visit and got a positive blood test.
So we also got the recommended lab work done with the surprising diagnosis.
Not only did he have the gene, but he also had both antibodies, indicating a strong presence of celiac.
So like any new mom, worried about the next steps, I wondered what on earth do we do now? We who already struggled to get our kid to finish a slice of pizza, let alone now be forced to eat all things gluten-free!
It was a major lifestyle change to embrace.
If you too have a newly diagnosed kid with celiac here’s what you need to do next:
Next Steps After a Celiac Diagnosis
Educate yourself on Celiac Disease.
Immediately after receiving your child’s celiac diagnosis, you most likely will feel an urge to do some digging, and rightly so! Educating yourself on celiac disease and the gluten-free living is one of the best things you can start doing.
Your doctor will provide you initial resources to get started and/or refer you to a nutritionist. If you’re insurance covers it you may also be provided the opportunity to attend a gluten-free workshop for families, like we did! Anything that provides a bit of guidance on understanding the seriousness of the allergy can only help you the new journey.
Below are some great free resources to get you started:
Start making small gluten-free changes.
You might feel completely overwhelmed with the new celiac diagnosis (we did!) but it’s important to not think about everything all at once. First focus on the little things you can start doing to introduce your kid to a gluten-free lifestyle.
Things like stocking up on a few gluten-free staples your child can begin incorporating into his diet, for a gradual introduction to the new taste. For us, it meant replacing the things he would typically eat come mealtime, starting with gluten-free cereals for breakfast, gluten-free bread and snacks for lunch and gluten-free pasta and sauce for dinner.
Get immediate family members tested for celiac
Next on your to-do list, should be getting siblings and parents tested. Celiac is genetic, so there’s a good chance someone else in the family is also affected. Schedule an initial blood test for each immediate family member…because it will help you decide if everyone needs to eat the same thing or if it’s only one child that should do so.
Decide if all will be gluten-free or just kid
So this step depends on the previous one. You may initially think it’s easier to just get everyone in the family to go gluten-free to avoid food mix-ups or cross-contamination. But you have to consider a few things.
How picky your other children also are in terms of foods (because gluten-free food takes some adjustment for many kids)
If they don’t actually have celiac or gluten-sensitivities (it may not suit them health-wise so this is something you really need to evaluate on case-by-case basis and speak to your doctor about)
Organize your pantry
Another BIG part of the changes you’ll need to make in your household after a newly celiac diagnosis, is re-organizing your pantry to be gluten-friendly.
We found this to be one of the more challenging pieces, considering we have a house of growing boys who love to raid the snack pantry.
One great tip a nutritionist at our doctor’s office recommended was to clean out the shelves (both pantry and kitchen) and make a section for gluten-free foods. Try to choose the higher shelf to prevent crumbs from falling onto the designated shelf.
This way you have easy access to gluten-friendly snacks and can prevent cross-contamination.
Make washing hands a priority
Now, this is actually the BEST tip for preventing cross-contamination of gluten-free foods in your home. It’s also one of the most important lessons to teach your gluten-free kid early on.
Anytime your kid is ready to eat, make sure he practices good hand-washing. After playing with toys, after hanging with friends at school, after touching objects around the house. You’d be surprised to learn the number of things that can have gluten traces (play-doh in your kid’s nails!) and should be washed off before snacking!
Talk to your kid about good food choices
When you’re an adult dealing with gluten issues it’s one thing; when you’re a kid who is still learning about everything in the world, it’s even more challenging. That’s why we as parents have to make it a point to continue educating our kids about good food choices, putting it in terms they will actually understand.
We like to remind our gluten-free kid that in order to prevent those nasty tummy aches he suffered from, he needs to eat the gluten-free foods and snacks.
Even better if they go for naturally gluten-free foods such as fresh fruit and veggies.
Follow-up with doctor
Finally, checking in with your gastroenterologist from time to time is a must! Our nutritionist recommended seeing the doctor one month after starting our gluten-free diet to track changes. From then on you’ll have to follow-up periodically to see how your gut is healing.
Starting the new diet early is truly key because according to CureCeliacDisease kids can start seeing improvement in their small intestines in a matter of weeks (and their intestine can be healed in 6-18 months, continuing a life-long gluten-free diet) while adults may have to wait 2 or more years to see major internal progress.
Once your kid starts their new diet, it’s important to track changes day-to-day. It will not only help you better monitor improvements or setbacks, but it will also be an easy way to document for your doctor come check-up time.
I found this extremely helpful when trying to demystify why he appeared perfectly fine one day, with issues the next day and to find hidden gluten sources and areas of contamination
You should treat it like a food diary of sorts, where you keep track of what meals your child ate and how his body handled it.
Click below to download a FREE printable tracker to get you started!
DOWNLOAD GLUTEN-FREE FOOD TRACKER