Do You Need an Endoscopy and Biopsy to Diagnose Celiac Disease?

Most experts say yes, you do need the procedure for a proper diagnosis

doctor performing endoscopy
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If you want a gold standard diagnosis for celiac disease, then yes, most experts agree you'll still need to have the endoscopy and the biopsy, even if your celiac blood tests were strongly positive. But there's admittedly some controversy surrounding this recommendation, and a few doctors now say it's possible to diagnose celiac disease without the procedure.

The process of diagnosing celiac disease normally starts with blood tests that screen for celiac disease. These tests look for antibodies to gluten that typically circulate in your bloodstream when you have the condition.

If those tests come back positive (or in some cases, if they're negative but you and your doctor still suspect celiac disease), then your doctor will recommend you confirm the celiac disease diagnosis through an intestinal biopsy. To accomplish that, she'll need to collect tiny samples of your small intestine for testing in a procedure called an endoscopy.

If those intestinal samples, once examined under a microscope, exhibit a form of intestinal damage known as villous atrophy, then you'll be diagnosed with celiac disease.

Some Experts Believe Endoscopy Isn't Necessary

That's true: several prominent celiac disease researchers have said that you don't really need a biopsy to diagnose celiac disease.

For example, Dr. Alessio Fasano, director of the Center for Celiac Research at Massachusetts General Hospital, argues that you only need four out of five factors to diagnose celiac disease. The five factors Dr. Fasano cites include:

In Dr. Fasano's opinion, if you have everything on the list except for positive biopsy results from the endoscopy, then you can skip the endoscopy.

Other experts note that the blood tests used in the diagnostic process are so accurate that the biopsy to confirm the diagnosis is no longer necessary when blood test results are positive or strongly positive. For example, researchers reported in the medical journal BMC Gastroenterology that they were able to diagnose or exclude celiac disease without an intestinal biopsy in 78% of patients.

Do You Still Need an Endoscopy and Biopsy?

There are many other conditions that can cause symptoms similar to those found in celiac disease, and an endoscopy with a biopsy can help your doctor determine what condition you have (and what you don't have). Also, the blood tests used to screen for celiac disease aren't 100% accurate, and their accuracy can vary depending on the lab used to process the test.

Therefore, most gastroenterologists still believe it's vital to go right to the source (i.e., your small intestine) to see directly whether there's celiac-related damage.

In fact, the American College of Gastroenterology reiterates in its clinical guidelines for diagnosing and managing celiac disease that an endoscopy with biopsy "is a critical component of the diagnostic evaluation for persons with suspected CD [celiac disease] and is recommended to confirm the diagnosis."

However, there are some downsides to getting an endoscopy, too. Although the procedure really isn't bad to undergo (really!), it can take some time to schedule, and it can be expensive (even if you have insurance).

In addition, while you're waiting for your endoscopy, you'll need to continue eating gluten, since the test looks for gluten-induced damage to your small intestine. (Learn more: Why do I need to be eating gluten for celiac disease testing to be accurate?)

A Word from Verywell

So yes, while there are excellent reasons to agree to the procedure, there are some reasons to skip it, too... especially if your blood tests strongly indicate you have celiac disease.

It's also possible that expert opinions on this will shift in the future. Six decades ago, experts agreed you needed three endoscopies with biopsies to diagnose celiac disease: one to document initial damage, a second following initiation of the gluten-free diet to document healing, and a third to document new damage following a gluten challenge.

Ultimately, if you're not sure if you should undergo an endoscopy and biopsy to confirm your diagnosis of celiac disease, you should discuss the pros and cons in detail with your physician.


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