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.

Interested in more discussions like this? Go to the Digestive Health Support Group.

kellye5 | @kellye5 | Jan 17, 2018
In reply to @kanaazpereira "Welcome to Connect, @slm65, Thank you so much for taking the time to share your son's..." + (show)
@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?

Jump to this post

Thank you so much!

REPLY
kellye5 | @kellye5 | Jan 17, 2018
In reply to @kanaazpereira "Welcome to Connect, @slm65, Thank you so much for taking the time to share your son's..." + (show)
@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?

Jump to this post

I would very much appreciate it! Thanks for your guidance.

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Jan 17, 2018
In reply to @kanaazpereira "Welcome to Connect, @slm65, Thank you so much for taking the time to share your son's..." + (show)
@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?

Jump to this post

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.

REPLY
Mindi | @mindi | Jan 17, 2018
In reply to @theresap "Hello everyone. I was just diagnosed with collagenous gastritis on 1/12/18 by Dr. Joseph Murray at..." + (show)
@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.

Jump to this post

Sorry to hear @theresap about your diagnosis. That is good you can attend Mayo Rochester as it appears Dr Joseph Murray Is seeing more CG sufferers than anywhere else.
I cannot attend Mayo due to location but I am interested to know what all the tests are that a few of his patients have mentioned on this site.
I expect Endoscopy and some blood work checking iron stores and basic blood work. I have endoscopy on annual basis and iron stores checked every four months plus have had one colonoscopy. The colonoscopy showed no changes in colon. Confirmed problem only in stomach. However, would like to know if there are other particular tests I should ask my Dr to do.
Are any of you included in the microbiome study with Dr Murray Kanaaz mentioned?
pvb can I ask how you were taking Budesonide and the different way now taking?
kellye5 that is relief for you your son will be seen by Dr Murray.
Thankyou

REPLY
e | @epvb | Jan 17, 2018
In reply to @theresap "Hello everyone. I was just diagnosed with collagenous gastritis on 1/12/18 by Dr. Joseph Murray at..." + (show)
@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.

Jump to this post

I have taken budesonide in several different forms. I originally took it 3x daily, each a different way. Capsules were opened, placed in syrup and taken. Then the 3rd dose was taken as whole capsule at bedtime. The syrup was at one point changed to applesauce and one capsule opened and the second capsule was opened and crushed and both taken with applesauce. I am now taking compounded budesonide, made only by Mayo twice a day. Once at breakfast taken as whole capsule and second at bedtime whole capsule. Hope this helps.

REPLY
Kanaaz Pereira, Connect Moderator | @kanaazpereira | Jan 17, 2018
In reply to @kanaazpereira "Welcome to Connect, @slm65, Thank you so much for taking the time to share your son's..." + (show)
@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?

Jump to this post

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.

REPLY
Kanaaz Pereira, Connect Moderator | @kanaazpereira | Jan 17, 2018
In reply to @theresap "Hello everyone. I was just diagnosed with collagenous gastritis on 1/12/18 by Dr. Joseph Murray at..." + (show)
@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.

Jump to this post

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.

REPLY
kellye5 | @kellye5 | Jan 26, 2018
In reply to @kanaazpereira "Welcome to Connect, @slm65, Thank you so much for taking the time to share your son's..." + (show)
@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?

Jump to this post

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

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Jan 26, 2018
In reply to @kanaazpereira "Welcome to Connect, @slm65, Thank you so much for taking the time to share your son's..." + (show)
@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?

Jump to this post

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

REPLY
Mindi | @mindi | Jan 26, 2018
In reply to @theresap "Hello everyone. I was just diagnosed with collagenous gastritis on 1/12/18 by Dr. Joseph Murray at..." + (show)
@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.

Jump to this post

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

REPLY
View MoreView Less
Please sign in or register to post a reply.