We know millions of people with celiac disease walk around undiagnosed. Many researchers estimate that around 97% of all people with celiac disease have yet to be diagnosed. A study published in the medical journal BMC Gastroenterology found that on average it takes 9.7 years for a celiac patient to be diagnosed after he or she first experiences symptoms, and 5.8 years after visiting a doctor about those symptoms. 5.8 years!

In part, we need greater education for patients, so they can understand that their suffering isn’t just their lot in life and so they can better understand and identify their symptoms.

But we also need greater education for physicians.

According to the Columbia University Medical Center, the United States has more cases of undiagnosed celiac disease than Western Europe and Scandinavia because doctors do not prescribe intestinal biopsies enough. No blood panel is 100% accurate; an intestinal biopsy is still the only gold standard for celiac disease diagnosis. See my lesson on gluten intolerance testing to learn about the different methods for diagnosing celiac disease and how the accuracy of those different methods is measured.

A recent study led by Dr. Lebwohl of the Celiac Disease Center and published in the medical journal Gastrointestinal Endoscopy indicates that patients seek medical attention but they are not receiving the biopsies they need to be properly diagnosed. While it seems to be improving, there is still a lag in the understanding and necessary testing required to properly diagnose celiac disease.

I encourage you to review my Celiac Disease Checklist and take the filled out form to your Gastroenterologist.

Doctors still need to better appreciate how often celiac disease goes undiagnosed so they can treat patients with greater attention and catch more of these cases. Unfortunately, the gluten-free diet fad may make more doctors roll their eyes at patients they may perceive to be jumping on a cultural bandwagon. But I urge doctors to exercise vigilance. Undiagnosed, untreated celiac disease can have severe long-term consequences, including cancer.

Millions of people remain undiagnosed. Please share this with friends and family who may be concerned about a clinical case of gluten intolerance. If they ultimately test negative — great! But let’s help chip away at that haunting statistic of undiagnosed patients.