Mayo Clinic Connect
I was recently diagnosed with collagenous gastritis which is very rate. I’m looking for anyone else who has similar diagnosis.
Liked by Teresa, Volunteer Mentor, jng123, jjdenaro, kellye5 ... see all
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:
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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Can you send me the same info?
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.
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???
Liked by John, Volunteer Mentor, buckeyeliz
@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
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!
I am sorry Kanaaz but I don’t know where to go to find Connect PM (private message) you mention. Can you re post on this page please. Other members may find information helpful too. Thank you.
Yes please post on this pageThank you kindly
Has anyone found this to be genetic?
My son (10 years) and I were both diagnosed recently. Being that it’s rare, it makes me wonder if there is a genetic connection, yet it could also be coincidence. Although both my doctor and my sons have been in contact with one another, neither has really given any information.
Liked by Kanaaz Pereira, Connect Moderator
Hi @jjdenaro @mindi @buckeyeliz and @marlaxyz
I took your questions and concerns to Dr. Joseph Murray, Mayo Clinic gastroenterologist and principal investigator of the above mentioned trial, http://www.mayo.edu/research/clinical-trials/cls-20314533 and here’s what Dr. Murray has to say:
“We’ve been seeing an increasing number of patients with this rare condition (CG). There can be several underlying causes…it can be autoimmune, it could be previous recurrent infection from heliobacteria, or it could also be due to certain medications the patients have taken. Besides identifying the cause we also look for deficiency states, such as in B12 and iron. There aren’t any drugs that have been tested or approved, but sometimes we borrow drugs, for instance those used to treat asthma, sometimes with good effect. With this trial we are trying to bring together as many patients as we can, to better understand what causes it (CG) and potentially find a treatment.”
With regard to this specific trial, the eligibility criteria on the webpage does not state that you have to be a Mayo Clinic patient. To clarify this, you could contact Dr. Murray’s office via email or phone number listed on the trial webpage http://www.mayo.edu/research/clinical-trials/cls-20314533
I sincerely hope this information helps you and others in this group; I wish you all success.
Liked by jng123
Thank you Kanaaz for speaking with Dr Joseph Murray and posting what he told you. From what I have gathered Mayo Gastroenterology has seen more CG sufferers than anywhere else.
I will quote what the Mayo Clinical Coordinator told me by email after I contacted her. I do not think I should attach her name here.
“This study is a biobank of samples which are collected for future research. We recruit patients with collagenous gastritis, celiac disease and a few other autoimmune diseases while they are being seen clinically at the Mayo Clinic. Patients do a blood draw and we collect small bowel biopsies if they are scheduled for an upper endoscopy clinically. With this being said, it really is only a study for our Mayo Clinic patient. I am not set up to recruit from other places”
I hear your frustrations Kellye5 I too feel at a loss due to the rarity of this disease and therefore so little happening with research.
I have experienced it as a disease with serious implications (large stomach bleeds requiring transfusions). I am young adult now. Most of my childhood I had stomach pain at times and after eating. Then as a young teenager I experienced my first large stomach bleed (large bright blood vomit) We think now I was probably having smaller bleeds earlier years too but blood not noticed in bowel actions.
I too wish there could be more interest in this disease.
My 23 year old son has be confirmed and diagnosed with Collagenous Gastritis. We are in SC and have been sent to MUSC who referred us to the NIH and have still had no call. All we get is omg, this is extremely rare! I have a sick kid who needs help (there is none) and his emotional state is getting worse and pain and symptoms increase and no one can will offer help. How do you go about finding someone who wants to research and help a patient with an rare disease? The treatments that are available have proven to not work, make the illness worse, or perhaps help for short periods. Any ideas would be appreciated. Thank you.
Liked by swingandamiss
Welcome to Connect, @slm65,
Thank you so much for taking the time to share your son’s experiences; I’m so glad to learn that he is doing well, although it sounds like it’s been such a tough journey.
You may notice that I moved your discussion and combined it with this existing discussion on collagenous gastritis (CG). I did this because I thought it might be beneficial for the many members in this group to read all the information you’ve shared.
If you are replying by email, I suggest clicking on VIEW & REPLY so that you can read through some of the earlier messages and meet some of our other members talking about their or their or their loved ones’ experiences.
Budesonide seems to be the drug of choice, but with mixed results; @epvb @kacolton @ibrown51484 @mindi, have discussed this drug, and also written about proton pump Inhibitors (PPI). I wonder if they have more insight about your question regarding PPIs curbing appetite?
Liked by John, Volunteer Mentor
I noticed your earlier post, and wanted to thank you for sharing information about yourself and your son. There are so many conditions for which there seems to be no clear cure, despite ongoing medical research. Sharing your stories and experiences, not only increases awareness and spur further research, but also offers support, and helps to make sense of one’s struggles.
Please continue talking and asking questions – the Connect community is listening.
Thanks for placing me in the correct discussion:0) In one of your posts you referenced that Dr. Murray thought some medications could be linked to the cause of CG. When my son was diagnosed with Pneumonia he was prescribed Doxycycline 100mg. I asked the doctors if his condition could have been started from a reaction to this drug as I really thought that this all started around the Pneumonia. They didn’t think the medicine was the cause but didn’t totally discount it. The side effects of this drug are nasty – definitely can cause havoc in the stomach. We have just been given the green light for our son to come off the Omperazole, we will slowly lower the dose over the new few weeks as we understand that the body can rebound coming off of this drug. We are happy and hopeful but also scared as we don’t want the cycle to start all over again. Stay tuned – will give updates. Thanks!
In regard to The Mayo Research Study Kanaaz has referred to, I will not attempt to contact co ordinator again as I have already been told twice by email that is only open to C.G. Sufferers seen at Mayo. I would be interested to know though if any other members on this site have been accepted into this study or any other study for C.G.
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