Collagenous Gastritis

Posted by e @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.

Here…I am the mother of a 23 year old diagnosed about 2 months ago and getting no where but what feels like the Guinness Book of World Records. Looking for support and guidance. Many thanks.

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@kellye5

Here…I am the mother of a 23 year old diagnosed about 2 months ago and getting no where but what feels like the Guinness Book of World Records. Looking for support and guidance. Many thanks.

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Hi @kellye5, I did a quick search through the CG discussion group and pulled together a few of the links that may be helpful to find in one place.

National Institutes of Health page on CG:
https://rarediseases.info.nih.gov/diseases/10961/collagenous-gastritis

Published studies/reports about CG; the first link is a case report from Mayo Clinic’s Department of Gastroenterology and Hepatology, Florida:
-– http://acgcasereports.gi.org/files/2017/05/CG-CGCR170035.pdf
-– https://www.wisconsinmedicalsociety.org/_WMS/publications/wmj/pdf/114/6/271.pdf

Clinical trial that includes collagenous gastritis at Mayo Clinic Rochester. Here is a link to the overview and contact information:
http://www.mayo.edu/research/clinical-trials/cls-20314533

More information at this post on Mayo Clinic Clinical Trials:
https://connect.mayoclinic.org/comment/70175/bookmark/?ajax_hook=action&_wpnonce=b6b5c1b941

How The Gut Microbiota Affects Our Health with Dr. Erica & Dr. Justin Sonnenburg
https://youtu.be/gOZcbNw7sng

Hoping you find some answers soon.

John

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@kellye5

Here…I am the mother of a 23 year old diagnosed about 2 months ago and getting no where but what feels like the Guinness Book of World Records. Looking for support and guidance. Many thanks.

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Thanks so much….I am very grateful!

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@guaranlam

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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Not at Mayo but we understand we (my son) might be among 13 being looked at period at this time(although we are waiting to actually become a patient). Glad you all are trying to receive help!

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@buckeyeliz

Hello! Thank you all for posting in this page. I can not tell you how helpful it is, because it doesn’t seem like there is a lot of information out there. My daughter was just diagnosed with CG at 11 years of age. She really doesn’t have a lot of symptoms and I’m so grateful. Seems like CG can be really painful.
She has some food sensitivities (pineapple). She was being tested because she is small for her age (7% in height and less than 1% now in weight and her bone age has not progressed in a year and is behind). Her celiac marker came back abnormal, so upon an endoscope and other labs, they have told us now she has CG and lactose intolerance. She has been taking Prilosec for about a week with no known help (although like I said no real GI symptoms most of the time). Anybody find help with acid blockers? They want to then scope her a ton in a few months (another endoscope, colonoscopy, and possible MRI). I really don’t feel good about this and really would like to try some diet changes etc. Has anyone had a food emptying study done? Anyone else small in stature at this age? Any help or advice is most appreciated. 🙂 Can you tell I’m an overwhelmed mom?!

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Hi! Sorry just saw your reply. Yes, we have a positive IgA test for Celiac, but biopsy was inconclusive. My daughter has been g free for approx 6-8 weeks, has increased appetite and some weight gain. At New Year are going Whole 30/Paleo type diet. Hoping to get some improvement.

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@kellye5

Here…I am the mother of a 23 year old diagnosed about 2 months ago and getting no where but what feels like the Guinness Book of World Records. Looking for support and guidance. Many thanks.

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Thanks John! Helpful links!

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Hi @kellye5,

I would sincerely encourage you to take a look at the link for the clinical trial that John provided…
Clinical trial that includes collagenous gastritis at Mayo Clinic Rochester. Here is a link to the overview and contact information:
http://www.mayo.edu/research/clinical-trials/cls-20314533

I’ve 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.”

Should you wish to seek a second opinion at Mayo Clinic, you could also contact gastroenterologist Dr. Joseph Murray directly via email. Please let us know if you have any questions – I realize that this is frightening and that you’re doing all that you can. We’re here to help.

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Thank you so much. I will contact the doctor by email. Does anyone have any thoughts on Mayo vs NIH? I am at an absolute loss and now am experiencing no one in SC will even talk to us. I am at the point of reaching out to ever medical university in the US and will go outside of if needed. Many thanks for this wonderful lead and information. Support is worth gold right now. Happy New Year.

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Has anyone found this to be genetic?

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Hi @kellye5,

This clinical trial, conducted by Dr. Murray as principal investigator, is sponsored by the NIH.
I’d also like to mention that having lived in Charleston, SC for several years, MUSC has a great Gastroenterology program; however, I know you’d agree that getting a doctor experienced in collagenous gastritis is important, and Mayo Clinic in Minnesota has been recognized as the best Gastroenterology & GI Surgery hospital in the nation for 2017-2018 by U.S. News & World Report.

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@kanaazpereira

Hi @kellye5,

This clinical trial, conducted by Dr. Murray as principal investigator, is sponsored by the NIH.
I’d also like to mention that having lived in Charleston, SC for several years, MUSC has a great Gastroenterology program; however, I know you’d agree that getting a doctor experienced in collagenous gastritis is important, and Mayo Clinic in Minnesota has been recognized as the best Gastroenterology & GI Surgery hospital in the nation for 2017-2018 by U.S. News & World Report.

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We are Columbian/Charlestonian’s….MUSC is a place that has our full support but in this case was a disappointment. 5 min in and out. Dr. has not called insurance to get zofran confirmed so my son can have the meds needed to just get by. Not at all what we expected but I do know it is an amazing place.

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@kanaazpereira

Hi @kellye5,

I would sincerely encourage you to take a look at the link for the clinical trial that John provided…
Clinical trial that includes collagenous gastritis at Mayo Clinic Rochester. Here is a link to the overview and contact information:
http://www.mayo.edu/research/clinical-trials/cls-20314533

I’ve 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.”

Should you wish to seek a second opinion at Mayo Clinic, you could also contact gastroenterologist Dr. Joseph Murray directly via email. Please let us know if you have any questions – I realize that this is frightening and that you’re doing all that you can. We’re here to help.

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Hello Kanaaz I contacted coordinator of clinical trial 20314533 at Mayo. I was informed is only available to CG patients who are seen at Mayo and have Endoscopy/Colonoscopy there.
Disappointing as CG is so rare there will never be significant number of patients at any one facility.

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@kanaazpereira

Hi @kellye5,

I would sincerely encourage you to take a look at the link for the clinical trial that John provided…
Clinical trial that includes collagenous gastritis at Mayo Clinic Rochester. Here is a link to the overview and contact information:
http://www.mayo.edu/research/clinical-trials/cls-20314533

I’ve 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.”

Should you wish to seek a second opinion at Mayo Clinic, you could also contact gastroenterologist Dr. Joseph Murray directly via email. Please let us know if you have any questions – I realize that this is frightening and that you’re doing all that you can. We’re here to help.

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Hello @mindi,

I’ve just sent you a Connect PM (private message) with some information; I hope that helps.

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@kanaazpereira

Hi @kellye5,

I would sincerely encourage you to take a look at the link for the clinical trial that John provided…
Clinical trial that includes collagenous gastritis at Mayo Clinic Rochester. Here is a link to the overview and contact information:
http://www.mayo.edu/research/clinical-trials/cls-20314533

I’ve 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.”

Should you wish to seek a second opinion at Mayo Clinic, you could also contact gastroenterologist Dr. Joseph Murray directly via email. Please let us know if you have any questions – I realize that this is frightening and that you’re doing all that you can. We’re here to help.

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That is not helpful at all but we can redo all of the testing if Mayo will pay for it….what is the likelihood of the happening? Our pathology has been confirmed by one of the best pathologists in the country at MUSC…so frustrating. WE have hit every wall.
Thank you for the information.

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@kanaazpereira

Hi @kellye5,

I would sincerely encourage you to take a look at the link for the clinical trial that John provided…
Clinical trial that includes collagenous gastritis at Mayo Clinic Rochester. Here is a link to the overview and contact information:
http://www.mayo.edu/research/clinical-trials/cls-20314533

I’ve 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.”

Should you wish to seek a second opinion at Mayo Clinic, you could also contact gastroenterologist Dr. Joseph Murray directly via email. Please let us know if you have any questions – I realize that this is frightening and that you’re doing all that you can. We’re here to help.

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How do I get to pm?

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