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Where can I find a gastro in adelaide who can diagnose refractory celiac disease have seen 3 so far and don't understand the most obvious question, why my celiac symptoms did not resolve on a gluten free diet the symptoms just got worse as it is attacking my nervous system. 

I recently traveled to Spain and Portugal. I was with a tour group, they knew I needed to be gluten-free and made sure the kitchens preparing the group meals were aware. But just in case, I took Gliadin-X with me and took it for every evening meal - and most other meals. The one time I got glutened was from lunch early in the trip - had to be from cross-contamination. I had not taken Gliadin-X before that meal, which made for a pretty miserable day. Learned my lesson... 😞 

Hi trents, thanks for the response.  The 2nd opinion doctor said that if my CRP is still elevated at that time, he would advise me to look at Crohns/UC or another autoimmune issue. The colonoscopy I had this year seemed to rule those 2 out for now so he still believed celiac may explain it. No previous doctors have suggested any explanation for it even after calling to tell me it was a concerning result.  I guess it feels tough knowing I have positive blood testing, permissive genetics, and visible duodenum changes... and somehow it's NCGS instead of celiac. I'm still surprised the biopsies came back negative when the doctor was so sure they would be positive.

"He also said that my CRP should return to a normal level at this time if the culprit was inflammation in the small intestine due to celiac." But with if the elevated CRP levels are caused by some other inflammatory process going on in your body? "She also said that my positive EMA isn't valuable because it has "a high false positive rate." Totally wrong! This is a highly accurate test for celiac disease, that requires specialized expertise to perform and interpret, and it is more expensive than other blood tests. It is generally used as a last test to confirm celiac disease after a positive tTG-IgA test. The sensitivity of a test refers to its ability to correctly identify individuals with the condition. For the EMA-IgA blood test, the sensitivity is generally very high, ranging from 90% to 98%. This means that the test can accurately detect celiac disease in a significant percentage of people who have the condition. The specificity of a test refers to its ability to correctly identify individuals without the condition. For the EMA-IgA blood test, the specificity is also high, typically around 95% to 100%. This indicates that the test can effectively rule out celiac disease in individuals who do not have the condition. Taken from the following article: Looking at the whole picture, I am wondering if you are transitioning from NCGS to celiac disease. Some experts in the gluten disorder field believe NCGS can be a precursor to celiac disease.

Hi all, just wanted to post an update.  I have been gluten free for about 1.5 months now and seeing improvement already in the bathroom.  Recently I had a visit with another GI doctor for a 2nd opinion. He said that while my blood tests and scope are not a "slam dunk" for celiac, he believes it's more likely than not that I have it. His advice was to stay with a celiac-level gluten free diet (no CC) for 6-12 months then retest to make sure TTG-IGA is still negative. He also said that my CRP should return to a normal level at this time if the culprit was inflammation in the small intestine due to celiac.  Today I had a follow up with the original GI that performed the scope. She is confident it is NCGS and says I can still have gluten sometimes. When I asked about the visible duodenum damage, she said it is just "irritation" from gluten because the biopsies were negative. She also said that my positive EMA isn't valuable because it has "a high false positive rate."  I guess I'm having trouble reconciling the totally different advice from these 2 GI's. I want to believe the new doctor more at this point because what he said just makes more sense to me, and he gave an actionable timeline for possible next steps. Feeling lost and disappointed at this point and wanted to write it down here in case anyone has input. Thank you.