Celiac

This summer brought an unexpected twist for our family: my youngest son was diagnosed with gluten insensitivity. Honestly, I suspect it’s subclinical celiac.

The whole journey started in kind of a roundabout way. Because I’m a pediatric endocrinologist, I’m always tinkering with the newest diabetes tech, supplies, and testing methods. One of the programs I recommend to families is AskHealth.org, which offers free mail-in kits to screen for type 1 diabetes risk. I decided to try it myself—ordered the kit, did a simple finger poke, mailed it back in the prepaid FedEx box—and six weeks later, they called me with the results.

The good news: neither of my kids showed genetic susceptibility for type 1 diabetes. The surprise: my youngest son did have markers for celiac disease.

That finding opened the floodgates. We followed up with a GI specialist, who ordered the usual commercial celiac panel (negative) and gene testing (positive). The genetics told a clearer story: he has about a 70% lifetime risk of developing celiac.

Looking back, it all started to make sense. He’s always been skinny for his age—so skinny that at one point he was labeled “failure to thrive.” We did a full workup years ago but found nothing conclusive. Then came the broken bones. At age four, he fractured his arm falling off the monkey bars. More recently, he broke another arm (requiring surgery) while competing at the world level of American Ninja Warrior for his age group. Two breaks might not sound like much, but with knowledge of the gene testing, it raised my suspicions.

On top of that, his stomach has been giving him trouble for years—loose stools, frequent bathroom trips, constant bellyaches that I often brushed off as anxiety. This summer, the symptoms escalated to the point where he’d ask to stay home from summer camp. After his latest fracture and surgery, I started connecting the dots: maybe he isn’t absorbing nutrients like he should.

So I asked him: “What do you think about trying a gluten-free diet? You don’t have to have an official celiac diagnosis, but it might make you feel better.” Without hesitation, he said yes.

That was three weeks ago. Since then, our whole family has gone gluten-free. And the change has been remarkable. His stomachaches are gone. His bathroom trips are normal. His anxiety—once a daily struggle—has dramatically eased. Honestly, he just seems lighter, happier, more himself.

Of course, gluten-free living comes with challenges. Gluten sneaks into the strangest foods—Rice-A-Roni, Rice Krispies, even soy sauce. And don’t get me started on the price tag. Packaged gluten-free products are shockingly expensive, and school birthdays now require a stash of safe snacks. We eat less pizza and fried food than we used to, which has its upsides and downsides.

But here’s the thing: as much as this shift has required planning, adjusting, and sometimes fumbling, it’s been worth it. We’re eating simpler, healthier meals. My son feels better than he has in years. And as a parent, there’s nothing more reassuring than seeing your child thrive.

I’ll be sharing more of our gluten-free journey here—the wins, the struggles, and the honest middle ground where most of us parents live. If you’re navigating your own child’s chronic health issues, I hope these reflections remind you that you’re not alone—and that sometimes, a change that feels hard at first can turn out to be a gift.

Martin (my son) is now blogging too. Below, you can see a little video of him describing how AskHealth.org testing went for him, and there is also a link to his blog about going gluten free.

Read about Martin’s favorite (and least favorite) gluten free substitutes here.