Endoscopy

[Soleihey]

My TTG was 167 one year ago. Recently had it retested one month ago and it went down to 16. I only recently had an endoscopy done as I was pregnant within the last year. I did not eat gluten prior to this endoscopy as I get very sick. Prior to obtaining the biopsies, the endoscopy said “ diffuse moderately erythematous mucosa to the second part of the duodenum without bleeding.” However, the biopsy came back negative. I assume it’s a false negative as I have also had genetic testing to confirm celiac. However, what would cause the inflammation to the second part of the duodenum and continued positive blood markers if the intestines have healed?

[Scott Adams]

Given your history of a high TTG (167) that decreased to 16 on a gluten-free diet, along with genetic confirmation of celiac disease, it’s likely the negative biopsy is a false negative due to not eating gluten before the endoscopy. Gluten is necessary to trigger the intestinal damage seen in celiac disease, and avoiding it can lead to healing and a normal biopsy despite ongoing immune activity (reflected in your still-elevated TTG). The inflammation observed during the endoscopy (“diffuse moderately erythematous mucosa”) could be residual damage, mild ongoing inflammation, or another condition like peptic duodenitis, but it’s consistent with celiac disease in context. Continued positive blood markers suggest ongoing gluten exposure, possibly from cross-contamination or hidden sources. Strict adherence to a gluten-free diet and follow-up testing are key to managing symptoms and reducing inflammation. Discuss these findings with your doctor to confirm the diagnosis and refine your dietary approach.

This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):