Mayo Clinic Connect
I was recently diagnosed with collagenous gastritis which is very rate. I’m looking for anyone else who has similar diagnosis.
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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?
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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.
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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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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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.
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.
@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?
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.
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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@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
Mayo Building – Mayo Clinic Patient Video Guide – Minnesota – YouTube
Liked by Kanaaz Pereira, Connect Moderator, kellye5
I would very much appreciate it!
Liked by John, Volunteer Mentor, kellye5
Thank you so much!
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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.
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.
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.
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