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@epvb

Posts: 28
Joined: Mar 27, 2017

Collagenous Gastritis

Posted by @epvb, Mar 27, 2017

I was recently diagnosed with collagenous gastritis which is very rate. I’m looking for anyone else who has similar diagnosis.

REPLY

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

Hi @epvb,

I can only imagine how worried you must be as it is indeed a rare condition. I found some information from Genetic and Rare Diseases Information Center (GARD), which you may wish to read: http://bit.ly/2nnHyCF

There has also been research that suggests that collagenous gastritis, and collagenous colitis share striking similarities and may sometimes occur together; (you can read more here, http://bit.ly/2nnX8y6); I’d like to tag @sodonnell, @shosh37 who have recently discussed collagenous colitis, and I sincerely hope they join in with more insight for you.

@epvb, as Teresa said, we would really like to get to know you better; what symptoms did you have that led to this 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.

Hello @kacolton,

Welcome to Connect; my sincere apologies for the delayed response. I do hope that @epvb will return with some insight for you.

Although I could not find many members who have this rare condition, @sodonnell, @shosh37 have discussed collagenous colitis, and I wonder if they have any suggestions?
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.

@kacolton, what symptoms are you experiencing, that you feel may not fit the profile of a person with collagenous gastritis?

@kacolton

@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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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.

@kacolton

@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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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 🙂

@kacolton

@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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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?

@kacolton

@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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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.

@kanaazpereira

Hello @kacolton,

Welcome to Connect; my sincere apologies for the delayed response. I do hope that @epvb will return with some insight for you.

Although I could not find many members who have this rare condition, @sodonnell, @shosh37 have discussed collagenous colitis, and I wonder if they have any suggestions?
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.

@kacolton, what symptoms are you experiencing, that you feel may not fit the profile of a person with collagenous gastritis?

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I am on Budsesonide, 6mg/day. I have microscopic colitis. I have gone gluten free on my own. I am feeling much better. I am being tested by enterolab. I haven’t got the results back yet.
mjgarr.

@kanaazpereira

Hello @kacolton,

Welcome to Connect; my sincere apologies for the delayed response. I do hope that @epvb will return with some insight for you.

Although I could not find many members who have this rare condition, @sodonnell, @shosh37 have discussed collagenous colitis, and I wonder if they have any suggestions?
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.

@kacolton, what symptoms are you experiencing, that you feel may not fit the profile of a person with collagenous gastritis?

Jump to this post

Have CG and on Budesonide. Seems to be reducing bleeding in stomach. My Gastro Specialist told me is difficult to know if any changes in collagen banding from one endoscopy to next. This is because difficulty in knowing if biopsy taken is from exact same place. The degree of banding in stomach can fluctuate.
In regards to the Mayo linq for research project with Dr Joe Murray I have had no success with hearing back from Contact Person for study. . Am keen to find out more but so far have sent two emails with no response.

Hello @mindi, and welcome to Connect.

I’m so sorry that you haven’t heard back from anyone with regard to the clinical trial. Might I suggest that you contact Mayo Clinic’s Research Information Center, http://mayocl.in/2rpp3SW?
You can call them…
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.
…or complete this contact form: http://mayocl.in/2tBTxPR
Mayo staff members respond to inquiries within three business days.

In the meantime, I’d like to tag @mjgarr @epvb @sodonnell, @shosh37 @kacolton @ibrown51484; do you have any insights or suggestions for @mindi?

Mindi, has your doctor ruled out other autoimmune conditions such as celiac disease? Have changes in diet also helped any?

Thank You for contact information Re: Research Study Will give that a try. Has anyone on this page joined study?
My Dr ruled out coeliac very early on and therefore have not removed gluten from diet.
Have not been diagnosed with other auto immune diseases to date.
Have had number of stomach bleeds (large blood vomits/malaena) when not on Budesonide. Required blood transfusion few times after bleeds.

@kacolton

@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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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!

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).

Hello @knutrition,

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.

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