Collagenous Gastritis

Posted by e @epvb, Mar 27, 2017

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

@kanaazpereira

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?

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I’m so glad to hear that you will be seeing Dr. Murray at Mayo Clinic, @kellye5! I’d encourage you to view the Visiting Mayo Clinic group on Connect – https://connect.mayoclinic.org/group/traveling-to-mayo-clinic-minnesota/ where you will find some fantastic discussions, and information, too
Please do keep us updated about your son’s progress, and we wish you all success.

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@theresap

Hello everyone. I was just diagnosed with collagenous gastritis on 1/12/18 by Dr. Joseph Murray at Mayo Clinic in Rochester. I am just starting to take budesonide. I have lots of gas, bloating and diarrhea. Lots of bloating after meals. I have been gluten-free and lactose-free for about 5 years. Stress definitely seems to make it worse. Did have severe heartburn but endoscopy revealed a stomach ulcer. Treated with Prilosec which got rid of the ulcer. Only occasional heartburn these days and not too severe. Diet does not seem to impact symptoms. Doesn’t matter what I eat, the bloating is there. I am happy to have found this information from others who have this condition.

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Welcome to Connect, @theresap. Thank you so much for joining and sharing your information. While incredible progress has been made in medicine, there are still some conditions where cure remains elusive. But sharing stories and experiences helps us cope with our struggles, helps us learn from each other, and to know that we are not alone – this is what Connect is all about.
Please let us know if you have any questions or if you would like to share your insights; we look forward to getting to know you.

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@kanaazpereira

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?

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How do I get in touch with the concierge at Mayo MN? Thanks.

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@kanaazpereira

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?

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Hi @kellye5, here’s the link — it has the hours, email and phone number.

Rochester Mayo Clinic Concierge Services
https://www.mayoclinic.org/patient-visitor-guide/minnesota/becoming-a-patient/concierge-travel-services

John

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@theresap

Hello everyone. I was just diagnosed with collagenous gastritis on 1/12/18 by Dr. Joseph Murray at Mayo Clinic in Rochester. I am just starting to take budesonide. I have lots of gas, bloating and diarrhea. Lots of bloating after meals. I have been gluten-free and lactose-free for about 5 years. Stress definitely seems to make it worse. Did have severe heartburn but endoscopy revealed a stomach ulcer. Treated with Prilosec which got rid of the ulcer. Only occasional heartburn these days and not too severe. Diet does not seem to impact symptoms. Doesn’t matter what I eat, the bloating is there. I am happy to have found this information from others who have this condition.

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Thank you @pvb for explaining. I am taking capsule form.

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Hi. I never received a pm. Just don’twant to miss any information. Thanks.

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@kellye5

Hi. I never received a pm. Just don’twant to miss any information. Thanks.

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kellye5 I’m not sure what you referring to bout “never received pm”. If it was referring to my previous post bout Budesonide and thanking epvb for information it was to the post published January 17th.

I too do not want to miss any information as there is little out there with virtually no interest from scientific/medical world.

Liked by kellye5

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@kellye5

Hi. I never received a pm. Just don’twant to miss any information. Thanks.

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One of the members had asked to pm me. I received it. We will be travelling there soon. Thanks.

Liked by Mindi

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Does anyone have a favorite hotel connected to Mayo MN that is reasonable for a week?

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@kellye5

Does anyone have a favorite hotel connected to Mayo MN that is reasonable for a week?

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Hi Kelly, You’ll find some great recommendations about hotels in Rochester, MN in this discussion in the Visiting Mayo Clinic group:
– What are your accommodation recommendations when coming to Mayo? https://connect.mayoclinic.org/discussion/what-are-your-accommodation-recommendations-when-coming-to-mayo/

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Hey y’all. We are about 20 days out from our week or so stay at Mayo MN. I am so frustrated as I have called every week since getting accepted and an appointment to see if our records have gotten there and nothing until today…one set if records from our GI. I am now told the slides must be asked for from the pathologist…we had NO idea. Medical records is what we were told and they told us they would handle it. Where is the Mayo 101? I feel like an idiot and no the reason our docs here are not getting the records to Mayo is because they are losing a patient…they are delighted because NO ONE on the East Coast has heard of CG!! I felt like I was just a bother….and perhaps I was. Maybe I am supposed to know all of this….anything else I need to know? I have received nothing. No app. time or place. Is there a shuttle at Rochester International airport? I am just a mom from SC trying to get my kid help in MN…with No guidance. I have read maps and other’s stories but I am anxious.

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@kellye5

Hey y’all. We are about 20 days out from our week or so stay at Mayo MN. I am so frustrated as I have called every week since getting accepted and an appointment to see if our records have gotten there and nothing until today…one set if records from our GI. I am now told the slides must be asked for from the pathologist…we had NO idea. Medical records is what we were told and they told us they would handle it. Where is the Mayo 101? I feel like an idiot and no the reason our docs here are not getting the records to Mayo is because they are losing a patient…they are delighted because NO ONE on the East Coast has heard of CG!! I felt like I was just a bother….and perhaps I was. Maybe I am supposed to know all of this….anything else I need to know? I have received nothing. No app. time or place. Is there a shuttle at Rochester International airport? I am just a mom from SC trying to get my kid help in MN…with No guidance. I have read maps and other’s stories but I am anxious.

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Hi @kellye5 – Sorry you are having problems with the medical records. Here are some links that I think will help you get around. The Rochester Airport does have a shuttle service. Mayo Clinic Concierge Services may also be a good start for any last minute questions. There is a phone number and email address on their page.

Rochester Mayo Clinic Concierge Services
https://www.mayoclinic.org/patient-visitor-guide/minnesota/becoming-a-patient/concierge-travel-services
MAYO CLINIC TOURS – YOUTUBE VIDEOS
Mayo Building – Mayo Clinic Patient Video Guide – Minnesota – YouTube

Rochester, MN Airport Shuttle:
https://goairportshuttle.com/rochester_rst_airport_shuttle
Traveling by air to Mayo Clinic’s campus in Minnesota:
https://www.mayoclinic.org/patient-visitor-guide/minnesota/travel-lodging-maps/by-air
Hope this helps. Also, make sure you bring a warm coat.

John

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@johnbishop Thank you. I know I am beginning to panic. We have purchased real winter weather clothing as SC has no real cold compared to MN…the cold actually scares me!
I will research all of these sites tomorrow. I truly appreciate your time.

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@kellye5 not too worry about the cold. We’re getting a heat wave next week – mid 20s. Once at the clinic you can get around through subways or skyway links between buildings.

Liked by kellye5

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