Unsure of where diagnosis stands

[Eleigh123]

I have had blood work that has said from my understanding that I have celiac, but after having an upper endoscopy, the gastroenterologist had said it was completely normal. Upon further reading, it seems like the positive serology is more reliable. Does anyone have any experience with this? I already have other autoimmune things going on as well as vitamin B and D deficiency. 
 

TTG AB, IGA. 5

Immunoglobulin A 153

Endomysial antibody SCR positive 

endomysial antibody titer 1:10

[trents]

Welcome to the forum, Eleigh123.

Actually, the endoscopy with biopsy is considered to be the gold standard of celiac diagnosis. However, we do get reports from forum participants occasionally where the antibody testing was positive but the endoscopy/biopsy was negative. This can happen for several reasons:

1. The gluten free diet was begun after the antibody testing but before the endoscopy/biopsy occurred such that healing of the small bowel villi had already begun.

2. The person doing the endoscopy did not do a thorough job of sampling. Celiac damage to the lining of the small bowel can be patchy and doing a thorough job involves taking multiple samples from both the duodenum and the duodenum bulb. You would be surprised how often this is not practiced.

3. The antibody results are a false positive, caused by something else besides celiac disease. Usually, we see this when the scores are marginally positive. Which brings up a question. See below.

We can't tell much from the antibody scores you supplied because you neglected to include the reference ranges for negative vs. positive. There is no standard range for these tests. Every lab uses a different standard. Can you post those numbers again with the reference ranges please?

What symptoms have you experienced that led you to get celiac disease investigated?

The other thing I would point out is that sometimes the GI doc doing the scoping will give you a preliminary report based on what he can see with the naked eye during the scoping. This can happen when the damage is "young" or minimal but when the samples are microscopically examined in the lab they are sent to the results come back positive. Does your GI doc's "completely normal" report represent a visual assessment or the actual lab report after microscopic analysis?