Contradicting results?

[OliviaM19]

Hey all,

I wanted to see if anyone else was in the same boat. I saw a GI for the first time 3 weeks ago after my former (pediatric) GI recommended me to him. I was diagnosed with GERD (chronic acid reflux) as a kid, and she wanted me to continue treatment as an adult. My new GI talked to me about my symptoms and my diagnosis, and told me that he thought my GERD diagnosis was wrong. He wanted me to do some bloodwork, and stop taking my anti-reflux meds before an endoscopy, just to make sure nothing else was going on. When we got my serologies back, the only abnormal thing was that my tTG-IGA tested positive for Celiac (my levels were 14, with < 3 being negative). We did the endoscopy a week later, and that was completely negative. In fact, he told me that my intestines looked like textbook-worthy, healthy intestines. Because my results didn't match, he ordered genetic tests for HLA DQ2 and DQ8. I tested positive for both, including 2 sub genes for DQ2. Because of the genetic tests and the blood tests, he officially diagnosed me with Celiac. I know that Celiac typically isn't diagnosed without a positive biopsy, so I wanted to see if anyone else had had a similar experience. I'm already feeling better after being gluten-free for less than a week, so I don't think my GI is wrong, I just think this is a pretty strange experience.

[GFinDC]

Hi,

I think you have a good GI doctor!  The endoscope can only reach about 5 feet into the body, so the doctor can't see much of the 22 feet long small intestine.  So a negative biopsy from the first couple feet doesn't mean a whole lot IMHO.

Response to the gluten-free diet, either improvement or deterioration of symptoms means that gluten is having an affect on the body.  Otherwise there would be no change.

Edited June 23, 2018 by GFinDC

[RMJ]

After you’ve been on the gluten free diet for 6 to 12 months you could have the antibodies retested.  If they go down that would mean your GI has the right idea!

[PK-432]

Good to know that you get right diagnosis.  In 06 biopsies it is possible to get negative results for celiac disease because it is also possible that gastroentrologist has not taken biopsy from damaged area. Be sure to learn about cross contamination and be on strict gluten free diet.  Best of luck! 

[frieze]

oh,oh,oh!  this doc is a KEEPER!

[Judy3]

Good doctor   I had a similar experience but opposite.  My lab tests were negative (we figure now that I was too sick to eat much at the time) and my biopsy they were not able to get in far enough they said... so with symptoms and the appearance of my small intestine along with genetic testing I was diagnosed with Celiac.    Gluten free for almost 8 yrs now and doing much much better.