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.

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Mindi | @mindi | Jan 11, 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?

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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.

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kellye5 | @kellye5 | Jan 11, 2018

I am getting somewhere with the information share by John by Dr. Joseph Murray. I am grateful for the help. Will keep everyone posted. I have feelers out everywhere so I feel hopeful at this minute.

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theresap | @theresap | Jan 17, 2018

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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5 replies
jng123 | @jng123 | Jan 17, 2018
In reply to @kellye5 "My 23 year old son has be confirmed and diagnosed with Collagenous Gastritis. We are in..." + (show)
@kellye5

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.

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Hi @epvb - you mentioned you have muscle aches and pains in your legs.... I expierence this randomly at least 4 times a month. They feel like growing pains but I am NOT growing. Is this what yours feel like? For relief I would rub rubbing alcohol (with a cotton ball) on where the pains is when I have it available then lie down. Heat also “helps”. Hot yoga is something I am trying to do more that seems to reallllly help bloating / body cramping. I hope this can help you and others.

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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.

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@theresap, I am so sorry to hear this. I was diagnosed about 1 1/2 years ago at Mayo Jacksonville and recently just met with Dr. Murray in Rochester. I have not yet had success with budesonide and several other medications but Dr. Murray is trying me on a different way to take the compounded budesonide. I have been on a ppi for heartburn for about 2 years. Per Dr. Murray I am now weaning off of protonix. It has been a difficult transition but I am determined to see if this will help me. Like you, my symptoms are not impacted by what I eat. I feel badly after I eat almost anything. I have never felt bloated; I get terrible stomach aches, sometimes cramping. I also get an overall "sick" feeling and weakness. I tried a gluten free diet but it did not help. I am curious why you were gluten and lactose free for so long? Did it take you a long time to get diagnosed with CG? I have been frustrated that nothing really helps the pressure that I feel all along my digestive tract. I am now trying to drink aloe water and eat ginger. Have you tried this?

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e | @epvb | Jan 17, 2018
In reply to @kellye5 "My 23 year old son has be confirmed and diagnosed with Collagenous Gastritis. We are in..." + (show)
@kellye5

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.

Jump to this post

I have never had growing pains but it seems like that might be a way to describe them. I have tried a heating pad but it did not help. Advil seems to help sometimes but I am told not to take ibuprofin. I get these leg aches several times a week now. Thank you for your recommendations.

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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?

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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.

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e | @epvb | 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

@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?

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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 @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


John

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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!

REPLY
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