Trusted Resource for Celiac Disease.

I like to say: Celiac disease is common. Diagnosis isn’t.

Celiac disease affects about 1% of the population. Yet more than half of the people with active celiac disease remain undiagnosed.

So why does it still take so long to find?

In the early 2000s, studies found it often took years for patients to receive a diagnosis. Some studies reported delays between 5 and 10 years.

More recent research suggests diagnosis is happening faster for some patients.

But not all.

A 2025 study found that high-risk adults in the United States still experienced delays averaging three years, with some patients waiting much longer.

So what is going on?

I don’t think there is one answer.

Part of the problem is that celiac disease doesn’t look the way many people think it should.

The classic image of celiac disease is chronic diarrhea, weight loss, and obvious malnutrition.

Celiac disease comes in various forms — classic, non-classic, and silent. All are celiac disease, but they can present very differently.

Modern celiac disease is associated with more than 200 symptoms.

Fatigue.

Migraines.

Constipation.

Anemia.

Joint pain.

Brain fog.

Skin problems.

Infertility.

Many of those symptoms overlap with dozens of other conditions.

We know far more about celiac disease today than we did when the stereotype of the classic celiac patient was created.

But the memo didn’t get out to everyone who needed to hear it.

Also, some research suggests women experience longer diagnostic delays than men. Other studies have found no significant difference. The evidence is mixed, but it raises an important question about who gets tested and who gets overlooked.

What I keep coming back to is this:

The blood test is relatively simple.

The disease is common.

The consequences of missing it can be significant.

So why aren’t we testing more people?

It boggles the mind that more people aren’t being tested.

My daughter was hospitalized last fall with a condition that caused liver inflammation. She is not especially lean nor is she particularly thick. She wouldn’t fit anyone’s idea of a traditional celiac patient. Along with a long list of other tests, the doctors ran a celiac panel.

It was negative.

She doesn’t carry the gene and will likely never develop celiac disease.

I’m oddly grateful they ran the test.

And a little annoyed I had to pay for it.

But I’d rather have one unnecessary celiac test than miss a diagnosis that could affect someone for years.

All of this to say: more testing for celiac disease isn’t a bad thing.

So tell me: Did it take a long time for you to be diagnosed?