Collagenous Gastritis

Thank you for your speedy and comprehensive response. I really appreciate it! I will definitely make contact with Mayo Clinic in London. The iron tablets are controlling his CG, but once he ceased taking them earlier this year, he relapsed with severe anaemia, so we are back on the supplements and they have just added a PPI twice a day as well. He has no obvious other symptoms other than lethargy, which impacts his ability to play sport, socialise etc. I am glad to find this resource/forum, as my doctor in Spain has very limited knowledge of the condition.

Hi @luft80. I just ran across this article listing top specialized hospitals worldwide. I sorted by speciality to find top 150 gastroenterology. Mayo tops the list and there are several closer to you in Spain, even Barcelona. The article explains ranking criteria and I do not know more beyond that. It may be worth digging into some of them a bit.

Newsweek Worlds Best Specialized Hospitals: https://rankings.newsweek.com/worlds-best-specialized-hospitals-2026/gastroenterology

I am interested to hear more as you take steps through the process of finding a top specialist for your son’s collagenous gastritis. Please come back and update.

When I was diagnosed, I had had diarrhea for about a year. Weight started at 186 down to 143. The GI said it was very rare, treated with Budesonide and he said it could come back, but he didn’t think it would. I finished my Budesonide and immediately started with the watery diarrhea again. Put me back on Budesonide for a month. This time I was fine for about 4 months. Then it came back again. It’s been following that 3-4 month break and flare. I also have gastroparesis. This complicates things. One says I need fiber, the other recommends low fiber. Have an appointment tomorrow and we will see what happens.

Hi @epvb,

I can only imagine how worried you must be as it is indeed a rare condition. I found some information from Genetic and Rare Diseases Information Center (GARD), which you may wish to read: http://bit.ly/2nnHyCF

There has also been research that suggests that collagenous gastritis, and collagenous colitis share striking similarities and may sometimes occur together; (you can read more here, http://bit.ly/2nnX8y6); I'd like to tag @sodonnell, @shosh37 who have recently discussed collagenous colitis, and I sincerely hope they join in with more insight for you.

@epvb, as Teresa said, we would really like to get to know you better; what symptoms did you have that led to this diagnosis?

I was diagnosed with collagenous gastritis , and am on omeprazole. However, I have a lot of pain in my stomach and diahrrea, as well as difficulty with weight gain and fatigue. I can’t really exercise a lot because the pain can become too much to bear. Any help?

@emlozano01 - welcome to Mayo Clinic Connect.

I'm sorry your current treatment does not seem to cover all the symptoms you are experiencing. I'm especially sorry to hear about the pain.

What led you to getting this diagnosis, and for how long have you had it?

@lisalucier
I had complaints about abdominal pain and weight loss, as well as inability to ingest certain foods that I usually could manage pretty well. This started in late October, and eventually had an endoscopy, which was over a month ago.I got my results back about 2 weeks ago. My doctor said my colon was healthy, but my stomach had clear inflammation.

@emlozano01 - have you and your doctor talked about adding a medication or switching to something else that might cover all your current symptoms?