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ironictruth

update on DGP and biopsy

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I said I would keep some folks updated who were curious about my positive DGP combined IGA/IGG assay which has mostly been negative when separated in to IGA and IGG tests (except 2 extremely weak IGA's).

I did 14 weeks of eating gluten and they retested the TTG and DGP (combined). TTG was again negative and DGP was pretty much exactly where it was 8 months ago. EMA was not done for some reason. The serology was done locally. The Boston folks said they would not do serology when I was there but await the biopsy.

The endoscopy which was done in Boston (6 samples taken) came back showing no villi blunting but an increase in intraepithelial lymphocytes. Not suggestive of active celiac disease but from what I read, lands on the Marsh 1 score. Slight increase in IEL's can be caused by NSAIDS, SIBO, H. Pylori, and others. Now, first, I do not use a lot of NSAIDs but admittedly used them about a month ago for 7 days (1 in the morning and 1 in the evening) after a fall and some bruised ribs. Second, locally, they poorly ruled out SIBO. Even though the test was negative, the folks in Boston questioned the method used as not being the best. Last, H. Pylori was ruled out at least in the samples taken from the small intestine in August.

Going back to August, there was no mention of IEL's on that biopsy but duodenitis (I assume, this would include an increase of IELs as well but hey, I am no doc or pathologist).

Anyway, resuming gluten did not seem to make me any sicker then I was before. Though admittedly, none of these symptoms started until my FIRST gluten eating for 6 weeks back in the fall/winter of 2015 so I am not sure I ever really felt better since then. I continue to get pressure and pain in upper right rib cage and feeling like my brain is being squeezed at times. Kind of makes you wish we had easy access to TTG 6.

During the hiatus of trying to get a diagnosis I was given one of Hashimoto's 6 months ago by a local endo. Suspicious of a conversation I had with him, I set out trying to get another local endo which literally proved to take the last 6 months and counting with poor coordination of medical are, lost records, etc. So, while I was out of town getting the scope done in Boston, and enjoying all of the food the city has to offer, I tried to see if I could get in to an endo THERE to rule out Hashi's. I did. And he did...in under 4 hours.

It was sort of comic relief in a way I guess.

I know people jump on the DGP thing, that it is an extremely accurate test, but I have already shared a study here showing potential low predictive value and have been informed of such by two celiac clinics in the United States. Not that it is a useless test by any means, but not heavily relied on by the celiac specialist community.  The irony, is of course we thought we would wait for the biopsy and the pathology report literally says no evidence of active celiac, the presence of IELs is non-specific, and basically the findings should be correlated with serology.

LOL!!!

SO, either I have the very start of celiac disease with atypical symptoms OR I have a false positive DGP as many had in the recent Columbia University study, and some other disease process. Landing me in pretty much the same boat I was before I resumed eating gluten at the end of December. Only now I am 3 pounds heavier (hey, pasta and chocolate cake were all over Boston).

I have yet to have my follow up appointment scheduled to discuss the results with the specialist. I will keep everyone posted.

I also agreed to participate in a study where they took some blood and 4 additional biopsies. My doc is the one who is doing the study but I am not sure he will or can use those samples to take an additional look.

Anyway, I am frustrated and scared still that something else is going on but much calmer then I was months ago. But I now know how to have a scope done without vomiting as they did a great job listening to my concerns in Boston. They used only 1 med instead of 2 (had the 2nd on back up if needed )as well as pushed the anti-nausea meds prior to the scope. And they informed me of a couple of possible tests I could have done locally which was  was a LMAO moment for me because one of them is a really easy test that is done often. Coincidentally,  my local GI doc thinks I am nuts but ordered some 2 day scan for me with radioactivity  to rule out a tumor practically no one ever gets. Nice of him to think of me, but a simple "lets see how your stomach is emptying" apparently was not a thought process there.

Anyway, I had a mini vacation out of it.

 

 

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3 hours ago, ironictruth said:

 came back showing no villi blunting but an increase in intraepithelial lymphocytes. Not suggestive of active celiac disease but from what I read, lands on the Marsh 1 score. Slight increase in IEL's can be caused by NSAIDS, SIBO, H. Pylori, and others.

It could also be NCGS as related by Umberto Volta in the recent Columbia Medical Centre research,  increase in IEL's was detected. I know you do your research IT but if you've not already seen it you may find this of interest: 

http://theglutensummittranscripts.s3.amazonaws.com/Dr_Umberto_Volta.pdf

Best wishes

 

 

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7 hours ago, Jmg said:

It could also be NCGS as related by Umberto Volta in the recent Columbia Medical Centre research,  increase in IEL's was detected. I know you do your research IT but if you've not already seen it you may find this of interest: 

http://theglutensummittranscripts.s3.amazonaws.com/Dr_Umberto_Volta.pdf

Best wishes

 

 

Thank you! An interesting read. 

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