Collagenous Gastritis

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.

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

Thanks so much....I am very grateful!

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!

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.

Thanks John! Helpful links!

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.

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.

Has anyone found this to be genetic?

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.