Collagenous Gastritis

This website was very helpful to me when I was diagnosed with microscopic colitis, which went into remission a few years ago. https://www.perskyfarms.com/phpBB/index.php
Lots of information here. I took Asacol for many years, which was helpful. Best to you in dealing with this frustrating disease.

I was diagnosed with Collagenous Colitis - CC in 2009. However, I'm pretty sure I was dealing with it long before then. I'm at the Budesonide - Steroid point now after going through the Pepto Bismol regimen last year. With a significant weight loss - 40 pounds - probably due to malabsorption of nutrition in my gut, I'm on a pretty gluten, dairy, etc. free diet. Take several supplements to make sure you have some nutrition. This disease also makes me very angry because the GI doctor community does not support a potential of food intolerance or trigger foods. Thanks to Mayo for at least recognizing there is something more than drugs to help live with this disease.

I would suggest you take Budesonide for several months. Only problem, it's quite expensive, so look to GoodRX and Single Care for help with the cost.

Good to hear from you with your experience. What oral medications were tried--with no relief.

I replied once but maybe didn’t go thru. My oral medications were: Budesonide, Diphenhydramine, Cholestyramine Resin. I have the number of a broker out of Idaho that can get you your Budesonide for $92 a month. If you would like the number let me know.

I have had CC for many years. At first, I took many of the meds already mentioned here - which did not help. I went to a different gastroenterologist who prescribed OTC Imodium. As simple as that sounds, it works for me. I take 2 - 2 mg tabs: 1 in AM and 1 in PM.

Hi vcastaldo... Thanks for your input. Good ole imodium. It is my normal "go to" for help calm my gut. It's funny, sometimes I can tell when I get up in the morning, before having a sip or a bite, that there is going to be an issue. It is the reason I can have much of a social life at all. I will finish taking this 3 month treatment plan (Budesonide) but if that does not resolve my problems I may try taking the Imodium regularly. Glad you found what works for you.

@fdixon63 - if you still have diarrhea now on Budesonide, you can still take Imodium.
Make sure to take an electrolyte solution to help replace what you lose with diarrhea, such as potassium.
When I was at my worst I got dehydrated- couldn’t keep up. The GI office offered IV treatments in the office. Something to think of.

Our 31-year-old son was recently diagnosed with Callogeneous Gastritis, and also with a thickened and bowed mitral valve. His cardiologist says his mitral valve may or may not be connected to the thick lining in his stomach. The doctor wants him to have genetic testing for Marfan syndrome, as well. Our son was also, unofficially, diagnosed with Asperger's when he was about 3 years old. Our gastroenterologist is referring our son to the Mayo Clinic in Rochester. The gastroenterologists here in Idaho have never seen this disease before. We are hoping to get in to see Dr. Murray, as well as a cardiologist and whoever would do the testing for Marfan syndrome. Just wondering if any of the rest of you have heart issues or Marfan syndrome, or if any of you are on the autism spectrum. What, if any, other issues are you seeing with the gasstritis?

Hi @mommyof6, my son was diagnosed one month ago and we live in the Bay Area. We have a GI at Stanford, but we are looking to fly to Boston for their specialist. Ours has him on an elimination diet, Prilosec twice a day, and a high-dose iron supplement. He was severely anemic as well, but the oral iron allowed his body to get to a low-normal range (although his stomach still shows bleeding). I'm sorry your daughter is going through this. Please let me know if you find anyone great out here.