Yes please post on this pageThank you kindly

Jamilynne Denaro

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.

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.

Are we able to communicate with Mayo before our appointments? @kanaazpereira