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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?
Replies to "Welcome to Connect, @slm65, Thank you so much for taking the time to share your son's..."
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.
I too have questioned possibility of drug such as antibiotic in early childhood that could have set C.G. process off. I have been told I had different antibiotics in early childhood.
We are scheduled for a week at Mayo MN late February. Any travelling, flights, reasonable hotels, what to expect for my 23 yr CG son/ patient that week...Dr Murray will oversee his medical needs from now on, I hope. We do have a few clinics around the country looking at his pathology but nervous about it all as he continues to become sicker. Many thanks.
@kellye5, we just returned from an appt with Dr. Murray. I have had so many tests run over the last year and a half, I'd be happy to share my experiences with you. Also, can share info re Rochester. Would it be possible to send you a private message?
Hi @kellye5, I think the following links may be helpful for your upcoming visit. The Concierge Services offers free services to all patients and can advise you on travel and lodging. I think the videos can be helpful to figure out the Rochester Mayo Campus layout.
Rochester Mayo Clinic Concierge Services
https://www.mayoclinic.org/patient-visitor-guide/minnesota/becoming-a-patient/concierge-travel-services
Mayo Building - Mayo Clinic Patient Video Guide - Minnesota - YouTube
https://www.youtube.com/watch?v=Hl8T3ubzqsk
John
I would very much appreciate it!
Thank you so much!
I would very much appreciate it! Thanks for your guidance.
Hi @epvb - all you have to do to send @kellye5 a private message is click on her username @kellye5 and then click the Send Private Message link at the bottom of her profile description.
Connect
Hello Kanaaz,
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!