My doctor in Jacksonville was not familiar with CG but is now working with Dr. Murray in treating me. I have had 3 endoscopies and a colonoscopy, along with MRI and numerous other testing of various organs. My last endoscopy showed that there was no sign of the collagen, however, my symptoms continue. I was on both budesonide and then prednisone (8 weeks) prior to the endoscopy. I am now on budesonide only, 3 times per day. I too had anemia and terrible heartburn prior to being diagnosed. I had 2 iron infusions and my iron has been stable since November. My other symptoms are quite different from yours. I have a spot in the upper portion of my stomach that sometimes feels like a rock or a pit, sometimes causing me to feel sick. One of my biggest complaints for which I can not find an answer is that often I feel very empty, almost as if I have not eaten all day. This happens a lot after I eat a meal so it is hard to understand. My limbs feel weak and I feel completely out of energy. No specific foods trigger this feeling. I have been seen by rheumatologists and endocrinologists but no answers. In the past I had many muscle aches, specifically in my legs and feet. I have never vomited. I was biopsied both for colitis and celiac and both are negative. Interestingly, I had H Pylori just prior to getting sick. I don't know if the two are related.
I'm curious if you have had any similar experiences. Have you tried any pain medications? I have tried 2 anti-depressants/anti-anxiety medications that were supposed to help with pain. I had too many side effects from these and decided I was better of without them.

Thank you for responding, I hope to hear back from you.

Hello, I've been having similar symptoms for about 8 years when I was first diagnosed with Collagenous gastritis. Stress defiantly makes it worse but I always have stomach problems. If I get hungry I get really bad stomach pains too. It's a really miserable feeling and other people don't understand how bad I feel. I've tried all types of medications from anti anxiety to antidepressants and steroids. Budesonide is a steroid that Dr Murray prescribed. It did help the first time but nothing really helps at this point. There as a Med student that's trying to study the gut bacteria to see if it plays a roll in the disease. There was a study that showed patients with collagenous colitis had similar levels of certain bacteria in their gut so it maybe provide some clues to the cause and potential cure. I will send you a personal message with the links to the forum and the medical study.

Hang in there, your not alone 🙂

Welcome to Connect @ibrown51484,

Thank you so much for sharing your insights and support.
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.

@ibrown51484, we look forward to getting to know you; besides medication, how are you coping with this condition?

Thank you for responding. I was on prednisone for 7 weeks. I tried several different anti anxiety and antidepressants. I found that the side effects were too much for me. Latest endoscopy showed collagen bands were no longer there but I continue to have same symptoms. I continue taking budesonide 3x daily along with heartburn medication. Have you had any relief and what seems to help you? I am trying a gluten free diet despite testing negative for celiacs. Have you tried this? Thank you for the medical study info.

Hi there,
I'm interested in the study you found regarding gut bacteria levels- would you mind sending it to me as well? Thank you!

I'm advocating for a fecal transplant to get some different bacteria in the gut.. it's with a try? Cannabis oils etc really help with nausea and stomach discomfort.

Hi There...I am in the same boat...I am waiting for the fecal implant in hope...my husband will be the donor...we have some bacterial issues with his so he is on some treatment...I am using Cannabis oil (wow hard to get here as it is not allowed thus I am not sure what I am getting at times...and it helps when I have pain which might lead to a blockage...please keep me in touch with how things are going...I will post on if it helps me...tried all the antibiotics, motility drugs etc...not really helping...I love eating and eating is such a bugger...so so much pain as soon as I heat more then half a fist full...

How are you able to get the fecal transplant.. seems like if you don't have c diff I can't get it. What's the best approach

Similar, walking wounded here. I have it and and not fixed

Hi there. Nice to meet you yet so sorry for the circumstances. I'm so sorry to hear how you are struggling with this. My 13yo daughter was just diagnosed with CG. She lives with constant stomach pain, lethargy, yet her iron levels are normal. We've not tried any meds or dietary changes yet. She also has a slightly enlarged liver & bulky spleen. I'm wondering if any of you have had either of these diagnosed? Curious to know if there is a relatoinship between the two.

I am SO interested in the study results of the similar gut bacteria that you mention. I would love if you could send me the links to the forum & the medical study. As there are so few of us, I feel that I want to collate as much individual case info as possible. A survey of sorts, that may be presented to all Gastroenterology/Medical/Naturopathy associatons for consideration to prompt further study. I notice CG is not isolated to a particular part of the world (we are in Australia) how good would it be to get all countries involved in trying to find a cause/cure?

Any ideas on how to start our own personal patient study/survey would be great! Let's beat this thing together.