Many with Suspected Celiac Disease Don’t Get Recommended Tests

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People with evidence of celiac disease should undergo a combination of tests, including a biopsy of the small bowel, to establish a diagnosis, say guidelines from the American College of Gastroenterology and the American Gastroenterological Association. This is the definitive way to diagnose celiac disease. But a 2019 study in Clinical Gastroenterology & Hepatology found that about a fifth of patients do not get a biopsy.

To investigate the differences between patients who receive a small bowel biopsy and those who do not, researchers analyzed data on 982 patients. They found no demographic differences between the 780 patients who underwent biopsy and the 202 who did not. But the 21 percent of patients who did not have a biopsy were less likely to have been diagnosed by a gastroenterologist, less likely to seek nutritional counseling, and more likely to use supplements to help with digesting gluten than those who did have a biopsy.

The findings suggest that some patients, having not undergone thorough diagnostic testing, may have been misdiagnosed. It is also likely that patients who are not managed by a gastroenterologist might be missing out on care that could help them best manage their disease.

If you are diagnosed with celiac disease by a non-gastroenterologist, make an appointment with a gastroenterologist for confirmation of that diagnosis. Even if a gluten-free diet is relieving your symptoms, see a gastroenterologist to be sure your health is maintained.