Hi, I’m a little late to the party! I’ve been diagnosed with collagenous gastritis for about 8 years now. It started with a small GI bleed, and then turned into intense stomach pain and aching. The stomach pain persisted for about a month until I was able to get diagnosed and put on Prilosec and antibiotics (they initally though it was H. Pylori). During that time period I lost a lot of weight because I wasn’t able to eat anything. I would just puke up what I ate. The medications started helping after not too long and my stomach pain actually went away almost completely. I didn’t have many problems with it until about 3 years ago, when it kicked into gear again. Lately it has progressed a lot. I used to be able to eat almost anything I wanted but now I can’t eat chocolate, tomato sauces (goodbye spaghetti), fruits, raw vegetables, red meats, greasy foods, or anything that has vinegar in it. Both Nexium and Prevacid worked briefly but then stopped working at all. I haven’t taken Prilosec in a long time because my doctors took me off of it since they were worried about it potentially affecting my bone density. Pepcid works, but barely. It keeps my symptoms at bay sometimes. On a typical day my symptoms only get worse in the evening, around 4-6pm. This is usually because the first dose of Pepcid wears off. When my stomach starts hurting, usually eating will make it a little better, or it will at least keep me from throwing up. I’ve gotten used to carrying emergency snacks around with me because I really don’t want to throw up in the middle of running errands. I should probably also mention that I have lupus and take prednisone and some other medications.
Have you had any luck with treating you symptoms? Has anything worked for you?
Collagenous gastritis is the pits and I hope we can all find some answers! It would be nice to live a more normal life again!