CELIAC DISEASE OFTEN GOES UNDIAGNOSED

For years, nobody could explain what was going on. I kept showing up with symptoms, questions and a body that clearly wasn’t thriving – yet no one could connect the dots. Eventually, I wasn’t seen as someone who needed answers. I was stamped as “anorexic” by my doctor.

It was my mother, not a specialist, who put celiac on the table. 

A few simple tests followed by a biopsy later, she was right. And for the first time, the pieces finally fit.

Getting the diagnosis was a strange mix of emotions. There was anger, because I couldn’t ignore how long I’d struggled without support. I felt grief for food I loved but could never eat again. Relief, because I finally had an answer. And excitement because for the first time, I could imagine feeling “normal” again… whatever that might mean.

I know this isn’t a unique story. Unfortunately.

According to what we know today, celiac disease affects roughly 1% of the population – yet a large portion of people are still living with it without knowing. Research suggests that 75-80% walk around undiagnosed.

The reason experts say around 75–80% may be undiagnosed is because population screening studies often find many new cases that were never identified through regular healthcare. In other words: when researchers test “everyday people,” they frequently discover that most of the people who meet the criteria for celiac disease were never diagnosed before. 

For example, a Norwegian population screening study found a total prevalence around 1.47%, and the majority (about 75%) were previously undiagnosed.

The real problem why celiac disease is often missed

It’s estimated that getting the correct diagnosis can take 6–10 years for many people. That’s a long time to live with symptoms, confusion and self-doubt.

One reason celiac disease is missed so often is that it doesn’t always look the way people expect.

It’s often called “the chameleon” for a reason: celiac disease can show up in many different ways – and it can affect far more than digestion. There are more than 200 symptoms linked to it, and the “classic” signs aren’t always the loudest ones.

OBVIOUS AND NOT-SO-OBVIOUS SYMPTOMS

If you suspect gluten might affect your health, ask specifically for testing

If any of the symptoms feels familiar, please stop the guessing.

If you suspect celiac disease, ask directly to be tested. Be specific. Advocate for yourself – even if you’ve been dismissed before.

But don’t go gluten-free before testing. This matters!

If you stop eating gluten before testing, you can affect your results.

Blood tests and biopsies rely on the body’s active response to gluten. If gluten isn’t there, the tests may not show what’s really happening.

So if celiac is a possibility, keep eating gluten until your doctor has completed the testing.

Most importantly: self-diagnosing can delay real answers.

So if you’re wondering whether gluten influences your health, don’t stay stuck in the middle.

Stop guessing. Get tested.

If you’re diagnosed (or already gluten-free) and want guidance

Once you have clarity, the next step is learning how to live gluten-free safely without fear and overwhelm.

Medical note: This post is educational and not medical advice. Always speak with your healthcare provider about testing and symptoms.