I am frustrated with testing: positive blood negative stomach scope

[GreenRider]

As reference here is my first post from October: 

 Where I was struggling to determine whether I had celiac. I have a blood tests reading: Tissue Transglutaminase Ab IgA is 143.7 and serum protein IgA 2.77. 

As an aside, I work in a science based industry that makes me feel strongly that either you have celiac or not. I don't want to be gluten-free without some definitive results. 

Today I finally had an endoscopy, which on the results it says: "normal. no apparent celiac disease." The doctor came out to see me after the test and said the same thing. He mentioned that they took 2-3 biopsies, so we will have to see what those say, but he said the stomach looked very regular. I have been eating gluten 1-2 meals a day for the last 1.5 months. I have been having some possibly related stomach symptoms in the last few weeks: very lose stool, indigestion, bloating and occasional constipation.

I called to book a follow up as suggested by the doctor and cannot get in until August 20. I'm so frustrated!!! He said as he left that I could go ahead and do a gluten free diet is I want....but like what the heck? These results are so inconclusive to me. 

Any thoughts or feedback is MUCH appreciated. How can my stomach look so normal and yet my numbers are SO high? I'm very frustrated with this and especially the inability to see him until end of August.  

[cyclinglady]

I think you need to wait for the pathologist’s report.  My GI used an older scope, so he visually could not see any damage.  My biopsies revealed a Marsh Stage IIIB.  

In the meantime, go gluten free as he suggested.    The small intestine is vast.  He did not take a lot of biopsies.  Damaged areas can be missed.  

[GreenRider]

Thanks for the feedback, this is really helpful. I was very surprised and a little shocked at the answer of "we didn't see any celiac." We had even discussed the need to do lots of biopsies at my first appointment together - hoping he didn't decide to do fewer just because he saw no apparent celiac. 

 

Thanks again! 

[cyclinglady]

And...my follow-up endoscopy after being gluten-free for five years revealed healthy villi.  My new GI had the latest and greatest scope.  I even got pictures!  The pathologist’s report confirmed the endoscopy results.  

[RMJ]

If the biopsy is negative or inconclusive you could see if your antibody levels go down on a gluten free diet.  That would be an indication that your body attacks itself when you eat gluten.