Mayo Clinic Connect
I was recently diagnosed with collagenous gastritis which is very rate. I’m looking for anyone else who has similar diagnosis.
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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
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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
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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
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@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.
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…
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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…
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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
Liked by Teresa, Volunteer Mentor, Gail, Alumna Mentor, wendyt2018
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.
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I didn’t have an enlarged liver or bulky spleen. My gallbladder was functioning poorly and had that surgery. Not sure if that was related or because of my own dietary choices.
In prevention magazine my wife found an article hat fecal transplants are helping people with C Diff. I thought it would worth a shot to see if it helps me but they won’t do it unless I have c diff.
Fecal transplants seem to be hugely successful in Aus also in c diff patients as well as ulcerative colitis. Have not heard if they help with upper GI issues like ours though. I have my natropath on the case & he has sited info that suggests that some success in treatment has been seen in gluten free diets, specific probiotics & herbs like Boswellia. Has anyone tried any of these or other natural alternatives? The more I read about steroidal & PPIs…the more worried I become. I absolutely agree that they have a place, but trying I’m to avoid these as my daughter is only 13. i’d also love to hear from anyone else who has been diagnosed with an enlarged liver or bulky spleen? It may be in response to CG but completely unrelated. Hope everyone is having a ‘good’ day.
Hope you are doing well? I am desperately interested in the study results of the gut bacteria levels also. Would you mind sending them to me? Thanks so very much. Doing everything I can to research & share…has lead me down the path of immunology. What an interesting road that has been!
Hi, i just saw this post, and i also have collageneous gastritis. Was diagnosed about 3 years ago after a second bout of vomiting blood, the last ultimately resulting in blood transfusions after complications from an endoscopy. At least at this
point I’m fortunate in that i feel well most of the time. I’ve found that eating a very
“clean” unprocessed diet helps tremendously, alcohol seems to make it worse. I take proxtonix, often every day, but when I’m eating very well i often don’t need meds. If you’d like to speak further please message me. I’ve never met anyone else with this diagnosis and I’m glad to hear there are doctors known to work with this diagnosis since my GI hasn’t seen it before. Thanks for posting.
Liked by Gail, Alumna Mentor, rinstaffordaz
Welcome to Connect; thank you for joining us and sharing your history. Isn’t it amazing how diet plays such a significant role in our health and well being! @guaranlam @galy @mjgarr (who has microscopic colitis), have also written about the diet changes they’ve had to make, and I hope they also join us with their insights.
@calif, may I ask what other changes you’ve had to make, besides diet? Are there any particular medications that have helped?
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