Collagenous Gastritis

If you want to learn if you have celiac, 2 weeks of eating gluten is not enough. The usual mention is several weeks, even up to 3 months. Otherwise, tests show up negative if you have been eating gluten free.
That's why it is important to take a celiac test before going gluten free. It is very hard to decide to retake gluten after feeling better without it. Many practiconers say 'try eating gluten free' and not first offer to give a celiac test. So sad after all that is known about celiac.
When I was diagnosed with celiac, I also was diagnosed with microscopic colitis.

I have been diagnosed in July ‘19 with Collagenous Gastritis. My second endoscopy in November reconfirmed the diagnosis. Initially, steroids specific for the gut and Protonix was prescribed. Now I am on Protonix. Due to the rarity of this disease, there is not a standardized protocol for treatment. My GI doctor suggested I receive a second opinion for treatment. Good luck finding a facility who specializes in CG. I was wondering, is there another patient out there with treatment modalities that have worked for them besides Protonix and a gluten free diet? Thanks.

I have been diagnosed in July ‘19 with Collagenous Gastritis. My second endoscopy in November reconfirmed the diagnosis. Initially, steroids specific for the gut and Protonix was prescribed. Now I am on Protonix. Due to the rarity of this disease, there is not a standardized protocol for treatment. My GI doctor suggested I receive a second opinion for treatment. Good luck finding a facility who specializes in CG. I was wondering, is there another patient out there with treatment modalities that have worked for them besides Protonix and a gluten free diet? Thanks.

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?

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.

Hi! Yes!!! I have had maybe 10 major upper GI bleeds over the past 7ish years. They tend to be quick and by the time they get me in to have an endoscopy, my stomach may be a little bloody but they are unable to find the source of the bleeding. I am not sure how frequently your daughter has these issues, but mine happen infrequently enough (knock on wood haha) that it appears to be a slight inconvenience in my life. The last time I had a GI bleed, my doctors got me in within ~5 hours and found an area they thought might be the location of the bleed and added clips to it. I am hoping to have another endoscopy soon to see if inflammation in that area decreased. I hope your daughter feels better!

Thank you for your reply. I'm sorry that you also have been going through this. My daughter was diagnosed about 5 years ago and has been hospitalized around 10 times because of those bleeds. Same thing, by the time they are able to go in, they are not able to pin point where the bleed is happening. It has been such a scary and frustrating journey , not having a specific treatment or diet that helps with CG since it so rare. Have you tried any specific diets that you feel have helped you? What do you they currently have you taking ? Thank you again for your time. Hope you also feel better .