1. < Digestive Health

Collagenous Gastritis

Posted by e @epvb, Mar 27, 2017

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

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kellye5 | @kellye5 | Dec 31, 2017
In reply to @kanaazpereira "Hi @kellye5, This clinical trial, conducted by Dr. Murray as principal investigator, is sponsored by the..." + (show)
@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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Mindi | @mindi | Jan 8, 2018
In reply to @kanaazpereira "Hi @kellye5, I would sincerely encourage you to take a look at the link for the..." + (show)
@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.

REPLY
Kanaaz Pereira, Connect Moderator | @kanaazpereira | Jan 8, 2018
In reply to @kanaazpereira "Hi @kellye5, I would sincerely encourage you to take a look at the link for the..." + (show)
@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.

REPLY
kellye5 | @kellye5 | Jan 9, 2018
In reply to @kanaazpereira "Hi @kellye5, I would sincerely encourage you to take a look at the link for the..." + (show)
@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.

REPLY
kellye5 | @kellye5 | Jan 9, 2018
In reply to @kanaazpereira "Hi @kellye5, I would sincerely encourage you to take a look at the link for the..." + (show)
@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?

REPLY
kellye5 | @kellye5 | Jan 9, 2018
In reply to @kanaazpereira "Hi @kellye5, I would sincerely encourage you to take a look at the link for the..." + (show)
@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.

Jump to this post

Can you send me the same info?

REPLY
marlaxyz | @marlaxyz | Jan 9, 2018
In reply to @kanaazpereira "Hi @kellye5, I would sincerely encourage you to take a look at the link for the..." + (show)
@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.

Jump to this post

I share your frustration. I would be at Mayo Clinic on the next plane but the testing policy - as near as I can tell - is giving them a blank check. Luckily, we live near some great facilities. Not everyone is that lucky.

REPLY
kellye5 | @kellye5 | Jan 9, 2018
In reply to @kanaazpereira "Hi @kellye5, I would sincerely encourage you to take a look at the link for the..." + (show)
@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.

Jump to this post

OMG...I am so stressed out and saddened for my kid. I was referred to a dr. here but have not made the call yet. I do not have a blank check but will do anything for my child. This is his entire life and NO ONE in SC has heard of CG. Where is the assistance???

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Jan 9, 2018
In reply to @kanaazpereira "Hi @kellye5, I would sincerely encourage you to take a look at the link for the..." + (show)
@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.

Jump to this post

@kellye5 I don't know if this will help or not but you may find more information here:

Here is information about Mayo Clinic's Billing and Insurance which includes information about Charitable Care and Financial Assistance at Mayo Clinic

-- http://www.mayoclinic.org/patient-visitor-guide/billing-insurance
-- http://www.mayoclinic.org/patient-visitor-guide/billing-insurance/financial-assistance

John

REPLY
buckeyeliz | @buckeyeliz | Jan 9, 2018
In reply to @kanaazpereira "Hi @kellye5, I would sincerely encourage you to take a look at the link for the..." + (show)
@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.

Jump to this post

I'd love that info too. I've considered contacting the Mayo Clinic, as my daughter will likely need another Endoscope in 6 months to a year to see how things are progressing and my thought is why not have the Mayo Clinic do it so she and others could be helped? We have a great Children's Hospital here in Columbus, OH, but there isn't anyone too familiar with CG. I have good insurance, but would need to know the details about what is covered financially speaking. Also I am very cautious and do not want her going through more scopes and procedures than necessary for her. Doctors here have talked about extra scopes and MRIs with contrast "just to make sure we're not missing something". I'm not for putting people, especially kids, through procedures for the sake of putting them through procedures and on my dime. Even with insurance the last scope and visits were thousands.
@kellye5 - You and your son are in my prayers. Zofran was a life saver for me during pregnancy as I was hospitalized for dehydration with both my kids. I sure hope you will be able to get what you need to help him get through this. Don't give up fighting and searching. My daughter is doing really well and has been a trooper with severe diet changes. Hard to tell yet how much it's helping, but she is gaining weight, hungry often (which hasn't been the case)...so both of those good signs. Keep the hope we'll find some answers together!

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