2 months ago I had an EGD for acid reflux and to remove polyps in the stomach. 2 weeks ago my gastro sent me for blood work a TTG/IGA and an endomysial AB draw, because I advised him I was iron deficient anemic. The blood work came back positive on all tests for Celiac Sprue, with a recommendation for a small bowel biopsy. He is not doing the biopsy, simply telling me to avoid gluten. I thought Celiac disease is officially diagnosed after a biopsy. Is this true?
The 'gold standard' is typically the biopsy, however it can often be negative when blood results are positive and may not show flattening of the villi or other signs of celiac disease until longer into the disease process. If your blood results came back positive, it would be to your advantage to consider the results as accurate and begin a gluten-free diet.
When you have the EGD done for acid reflux, did the doc take a look at the duodenum? What was said on the doc's reports and the pathology reports at that time? Did they do a biopsy then? Were the IEL's counted? IEL's are intraepithelial lymphocytes. Typically 0-20 is negative and greater than 40 is positive for celiac. The range of 20-40 is the 'gray zones.' If the doc asks to 'rule out celiac disease' and you fall into the 20-40 category, pathologist may say 'no evidence of celiac.' That statement can often result in a negative diagnosis with the biopsy, and an incorrect test. That, in addition to a lack of flattened villi, can be a real problem in diagnosing celiac and lead to years of unnecessary misery when only the biopsy is considered 'diagnositic' of celiac.
So a big question is, what was seen when your EGD was done? Get a copy of the pathology report and docs report that was done at the time and read them.
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