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I was recently diagnosed with collagenous gastritis which is very rate. I’m looking for anyone else who has similar diagnosis.
@epvb I was diagnosed a couple years ago with collagenous gastritis (CG) by Dr. Murray and Dr. Acosta at Mayo Clinic, Rochester. It first started in 2013 after a stressful period i was experiencing heartburn all the time and anemia – i had an endoscopy, and they didn’t see anything. Then, I had a massive GI bleed (hematemesis + melena). I was hospitalized for about 2 weeks and had a transfusion, and they did a bunch of endoscopies and just assumed I had regular case of bad gastritis. After that, i stopped eating or digesting anything that could make my gastritis worse, but I unfortunately had a second bleed in 2014, and that’s when they finally found out about my CG. I contacted Joseph Murray at Mayo and they gave me budesonide to take twice a day. Although it has been helpful since then, I’m having a rebound of symptoms just recently, so I’m looking to connect with people to see what worked for them. I’m wondering if one day they’ll find the root cause (like they did with celiac). A lot of the definitions/profiles of collagenous gastritis don’t really fit my experience, so I’m curious to see what other people have been through.
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I’m interested in the study you found regarding gut bacteria levels- would you mind sending it to me as well? Thank you!
Hello everyone! I was recently (finally) diagnosed with collagenous gastritis after a lifetime of unknown questions. When I was about 8/9 yrs. old I had severe stomach pains and vomiting and my pediatric GI discovered a bleeding ulcer due to h. pylori infection. I took medication to clear the infection but the gastritis continued and she teetered back and forth over possible Crohn’s of the stomach diagnosis despite inconclusive tests. No other reasonable explanations for the continued inflammation were considered. No memorable symptoms from teenage years to early adulthood and fast forward 15-20 years and I suspect due to heavy stress, my symptoms started to return. Two GI docs since then took biopsies and did endoscopes and noted mild to moderate gastritis and esophagitis. No labs noted collagen banding in the biopsies. I wonder what the lab protocol is for testing biopsies- was it missed all these years or has it recently developed? Previous GI doc tested for celiac in 2009 and I had elevated igG but all others were negative so he didn’t think it was significant. Now my new doctor at UCLA ran a full celiac workup and all tests (including genetic) were negative for celiac but she found I was igA deficient and very low on iron. I’ve had IV infusion and feel much better but am not currently on any medications. In my opinion,I think they will eventually find a link between bacteria in the gut and cell growth. There is so much we don’t know yet about the role bacteria plays but I am looking forward to more research being done on this (hopefully).
Welcome to Connect; thank you so much for sharing you story. In reply to your earlier question about the study, here is the link: http://www.mayo.edu/research/clinical-trials/cls-20314533?_ga=1.105687232.292424276.1484505519
I’ve also copied an overview of the clinical trial for your convenience:
“The purpose of this study is to develop a resource (bank) of biospecimens (blood, tissue, stool) and data collected from individuals with known or suspected gluten enteropathy, including celiac disease (CD) and dermatitis herpetiformis (DH). Other enteropathies will also be included: collagenous sprue, idiopathic sprue, lymphocytic enterocolitis, idiopathic enteropathies, collagenous gastritis, Whipple’s disease, and other miscellaneous inflammatory disorders of the small intestine. This resource will be invaluable in answering the important questions outlined above and other future unanswered questions.”
I’d encourage you to view the recently launched Gastroenterology & GI Surgery Page on Connect, https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/ where you will find a wealth of information, especially with regard to the link between our gut bacteria and digestive health.
In the meantime, I hope @epvb @sodonnell, @shosh37 @kacolton @ibrown51484 @mindi will also join this discussion with their insights.
I just found out about this service, from Mayo Clinic Connect Director, @colleenyoung, where you can talk to a real person at Mayo Clinic about any questions you may have about clinical trials. Here’s more information:
if you have general questions regarding research at Mayo Clinic or would like assistance searching for clinical studies that match your interests, here’s the weblink: http://www.mayo.edu/research/clinical-trials/contact
– Non-cancer clinical studies questions
Phone: 800-664-4542 (toll-free). This number is answered from 8 a.m. to 5 p.m. CST, Monday through Friday.
– Cancer-related clinical studies questions
Phone: 855-776-0015 (toll-free). This number is answered from 7 a.m. to 6 p.m. CST, Monday through Friday.
Members of our clinical trials study team can tell you more about the types of research taking place at Mayo Clinic locations. There are thousands of ongoing studies involving human research and more are added each day. Our staff can help you understand how Mayo Clinic research is improving health care around the world. The study team can help you explore research studies and clinical trials in which you may want to participate as a volunteer.
I have it too, sounds like there’s only 11 of us at mayo.. I’m interested in suggestions stories, whatever you’re going through
Hello @epvb and welcome to Mayo Connect. We are happy to have you join our online patient support group. I’m sorry to hear of this rare diagnosis. I hope that you are coping well with it. If you will, please share with us a little about this rare disorder. We would be interested in knowing more about collagenous gastritis, such as how is it diagnosed, what the symptoms are and what kind of treatments are used. As we all share information, we learn from each other and also gain support. We look forward to getting to know you better! Teresa
I have it too. Lots of nausea, I have to eat small portions and do it all day. Stay away from dairy, gluten, red meats, etc as they’re tougher to digest.. I’ve had it for 4 yrs. it’s like you always have one foot on the brake. So much energy goes to the gut and I never wake up feeling good. A life changer. I could go all day on what it feels like
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…
Funny I was warned off dairy and ALL carbs…I eat small portions of meat, chicken and fish … with some very soft steamed veggies…all hurts but somehow it works as then when it finally makes it down I do not have to deal with the intolerance issues
And yes it is SO hard to explain to others how it feels…words can not explain..I find exercise really helps and a positive mind set. It is a mind game after all … when it does not become acute (that is)
I wake up in the morning…scream (internally) they are all BASTARDS and then get up and start my day…my situation started 7 years ago…the SIBO stuff and stomach stuff (gastritis) started 2 years ago…
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
Tough to wake up, throw up, then be ready for the day
Similar, walking wounded here. I have it and and not fixed
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