That Time We Joined the 1% Club

This May marks the first Celiac Awareness Month that I’m observing not just as a nutrition professional—but as part of a family directly impacted by a celiac diagnosis.

Roughly 1% of Americans have celiac disease, making it more common than type 1 diabetes. Yet despite its prevalence, celiac often flies under the radar—and its diagnosis can be painfully delayed. In our case, it took nearly nine years to gain clarity. (6-10 years is average.) 

The official diagnosis came just five months ago. But, honestly, I’d been suspicious since my son was 18 months old given how hard it was for him to put on weight and how crazy he acted when he ate gluten. And how well he was doing being gluten free for so many years at that point.

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Lack of diagnosis wasn’t for lack of trying.

I started asking for celiac testing when my son was just 18 months old. For 2.5 years, those requests were dismissed. Eventually, out of sheer frustration, I began the process of switching pediatricians. Ironically, that pressure finally pushed the first doctor to run a celiac panel—which came back positive.

But that positive result was disregarded by the new physician, who insisted on a retest in order to make a firm diagnosis—once my son was already on a gluten-free diet. (This is a major misstep, as celiac tests must be run while gluten is still in the system to be accurate.)

From there, the situation unraveled:

• The wrong follow-up lab was drawn on a gluten-free diet, leading to misdiagnosis. 
• A genetic test for celiac risk came back falsely negative.
• And I, without any training in functional nutrition, didn’t yet have the tools to spot what was going wrong.

The clues were there. But the system—and our understanding—just couldn’t connect the dots at the time.

And when the diagnosis was finally, FINALLY confirmed this past January off his original lab test from age 4, I ugly cried. For days. It was a flood of emotion I hadn’t expected.

Many people feel relief with a diagnosis—they finally know what’s wrong and what to do about it. For me, there was certainly relief. But there was also deep guilt and frustration. I shouldn’t need a masters degree to figure out what was wrong with my child. I felt I had somehow failed my child by not figuring this out sooner, even though I had been relentlessly pursuing answers all along. And I was angry at a system that let us fall through the cracks, again and again. 

But the hardest part of this diagnosis? This wasn’t going to be just a mild or semi-flexible version of a gluten free diet. This was serious, permanent, extreme allergy-level gluten free.

That meant…

• Feeling left out at birthday parties and team dinners unless we could plan extensively in advance
• Saying goodbye to some of our favorite restaurants
• Worrying about cafeteria tables at school, now unsafe due to stray sandwich crumbs from other kids
• Managing the anxiety of spotting hidden gluten and avoiding cross-contamination at all costs

It suddenly felt like the world wasn’t built for us anymore.

And my son? He’s still grieving. His life seemingly changed overnight, even though he was already gluten free. 

This has been a season of grief—but also of clarity. And that clarity, even with its weight, brings peace.

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What I’ve Learned (and What I Hope Helps You):

🔍 Advocate like your child’s life depends on it.

Mothers of “mystery symptom” kids often do the best research. Sometimes even better than the FBI 😉. And this gives us powerful puzzle pieces that just the right person will know what to do with. That persistence is powerful—and often necessary.

🧪 Don’t wait for a perfect diagnosis to start experimenting.

We saw major symptom improvement just from experimenting with gluten removal years ago. That’s what kept us on the right track, even without formal confirmation.

📂 Keep records—of everything.

Lab reports, appointment notes, treatment plans. Save them all. Many people don’t get the hard copies of labs. Those old labs, stored in a folder on my harddrive, ultimately helped our new gastroenterologist confirm what no one else had been able to, even though the data was so old.

I hope your family never finds itself in this position—but if you do, please know: there is a way forward. Stay curious. Keep digging. Trust your instincts. And know that answers are possible—one layer at a time.