I was recently diagnosed with collagenous gastritis which is very rare. I'm looking for anyone else who has similar diagnosis.
Interested in more discussions like this? Go to the Digestive Health Support Group.
I have microscopic colitis of the collagenous kind. So far I have tried only one medication for it can't remember what it was. It did not help. I have a new gastroenterologist now, so I am hoping he can help.
Jump to this post
I have collagenous colitis as well. I was on entocort, but now need an option for the collagenous gastritis. They were thinking maybe a different form of entocort, generic us called budesonide.
I was just diagnosed recently with CG, also Collagenous Duodenitis and Collagenous Colitis. I am about to start treatment with budesonide. This is all new to me and am looking for ways to help my body heal. I am very weak, malnourished and dehydrated after months of living with this before and after my diagnosis. I have not eaten gluten since 2014 (until 2 weeks ago when I had to eat it for my celiac test which was negative). I look forward t reading more here.
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.
There are many people in my family with Celiac, and since I don't eat gluten anyhow, I am not worried about a diagnosis of that. Also I couldn't bear eating gluten for that long…2 weeks was horrible enough. Just trying to get the other stuff in check. It has been a long road. All the best to you.
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 @tenor, I'm not sure how they do the needed test collections but if you are interested in the clinical trial I would just send them your question to the email contact for the clinical trial. Is this the clinical trial you were looking at? – Celiac Disease Registry: https://www.mayo.edu/research/clinical-trials/cls-20314533
Yes, John, this is the one. I will contact them and hope for the best!
Many thanks for your reply,
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 .
It’s definitely a scary and frustrating journey. I hope that your daughter is able to have fewer admissions this year and in the future. One of my doctors suggested I try a gluten free diet (since wheat is typically not too easy on the stomach, they figured this may be a good idea since my stomach is already a little fragile). Other than that, I am allowed to eat anything I want to eat! I used to be on specially compounded Budesonide, but now I’m only on 20mg Protonix 2x a day. I’m curious to know if your daughter is on a similar diet and meds.
My 16-year-old nephew was just diagnosed with Collagenous Gastritis by a doctor at Kaiser in San Francisco/Oakland. Can we get a second opinion from Dr. Murray? Is there a clinical trial and/or support group he can join?
Connect with thousands of patients and caregivers for support and answers.
Already have an account? Sign In