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← Return to Collagenous Gastritis
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Hello @kacolton,
Welcome to Connect; my sincere apologies for the delayed response. I do hope that @epvb will return with some insight for you.
Although I could not find many members who have this rare condition, @sodonnell, @shosh37 have discussed collagenous colitis, and I wonder if they have any suggestions?
I did find an open clinical trial, at Mayo Clinic, with Dr. Murray as the principal investigator, which might be of some interest to you; you can read more details about the trial here: http://mayocl.in/2pl9VUA
@mjgarr, @lija, @david1952, @stargirl, @smashly, @hopex, @nidhi, have all discussed taking Budesonide, and I hope they also join the discussion, to share their experiences with this drug.
@kacolton, what symptoms are you experiencing, that you feel may not fit the profile of a person with collagenous gastritis?
Replies to "Hello @kacolton, Welcome to Connect; my sincere apologies for the delayed response. I do hope that..."
Have CG and on Budesonide. Seems to be reducing bleeding in stomach. My Gastro Specialist told me is difficult to know if any changes in collagen banding from one endoscopy to next. This is because difficulty in knowing if biopsy taken is from exact same place. The degree of banding in stomach can fluctuate.
In regards to the Mayo linq for research project with Dr Joe Murray I have had no success with hearing back from Contact Person for study. . Am keen to find out more but so far have sent two emails with no response.
Thanks for the information.
I have a collagenous sprue that is also very rare and quite debilitating.
Though I am in Jacksonville I wonder if I could participate in the trail by long distance? (Cr. Murray in Rochester)
I look forward to hearing from you all on this topic. I wish you better health and peace.
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I am on Budsesonide, 6mg/day. I have microscopic colitis. I have gone gluten free on my own. I am feeling much better. I am being tested by enterolab. I haven't got the results back yet.
mjgarr.