Collagenous Gastritis

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In reply to dpesola12 I am sorry to hear you too have been diagnosed with CG. Note you had large bleed from ulcer in 2006 and diagnosed 2010. What are your symptoms now and have you had any further bleeds since 15years of age?
Do you have to take medication to prevent inflammation in stomach.
Please make further post.

My grandson has been diagnosed with Collagenous Gastritis and we have been unable to find a physician willing to treat it. Can you please share any information that might help. He is 21 y.o. and hurts every day

Please don't despair. My daughter is 19 and was diagnosed when she was 12. She has been to some of the best gastroenterologists in the Charlotte, NC area and hey didn't really know what to do either but helped as much as possible. She was in the hospital 4 times for blood transfusions because of severe stomach bleeds. She is in college now and doing well, but on meds to prevent stomach bleeding but is not experiencing pain, thankfully. I've heard others rave over CBD oil for pain. I just started using RSHO Gold Hemp Oil for my own pain and it seems to be helping. It's expensive, but I've heard others says it has a lasting effect even after stopping. Worth experimenting with it. There are other good brands out there as well, but all of it is pricy. I know you hurt for your grandson and hope this forum helps with ideas and encouragement. One thing that helped my daughter was eliminating gluten, dairy, and sugar from her diet. And the things we all should be doing, exercising, enjoying life, fresh air and sunshine, and a community of loving friends and family have had tremendous benefits. If you haven't already done so, check out the Collagenous Gastritis Group Facebook Page: https://www.facebook.com/groups/1516927688436167/permalink/1952087654920166/. It has lots of information, encouragement, and ideas. Grandparents are amazing and your prayers will avail much I'm sure.

Hello emewood@emewood
That is good your daughter is managing CG condition. I would be interested to know the name of medication she is taking to reduce stomach bleeding. I am on Budesonide but if there is an alternative medication with less side effects I would like to know.
Thank you.

Hi Mindi, my son has been prescribed Budesonide and he hasn't started taking it yet as I was concerned about what the side effects would be. What has been your experience with Budesonide?

Hello motherkat
Sorry to hear bout your son.
His CG condition must be reasonably severe then if Budesonide has been prescribed. From what I can make out from this Forum there does not seem many of us taking Budesonide. Some seem to be taking just a proton pump inhibitor, such as Omeprazole, and maybe Iron supplements .
Of course I can’t be sure as members don’t always provide a lot of detail of the medications they are taking.
My own experience is that Budesonide seems to be helping my stomach and reducing chances of it bleeding.
It does seem to be keeping me more comfortable as prior to Budesonide I would often get stomach pain. I also take Omeprazole so that would be helping.

I have not to date had any problems with Budesonide. However, I certainly worry about the long term implications of taking this medication as it is a type of cortisone. Unfortunately I have no option and have to weigh up benefits of taking it over not taking.
I hope that’s helpful.

Hi motherkat
What sort of symptoms has your son had?
Thanks

Hi Mindi, his symptoms are really mild. No gastric pain at all. We were only able to reach his diagnosis after a gastroscopy. His symptoms were just anaemia related which is now under control. I'm really hesitant to treat him with all these drugs when he is currently symptom free. My fear is that he may get worse though, if we don't try something. Its a real challenge to know what is the right thing to do.

Hello motherkat. That is good your son has no pain. Was the anaemia caused then by low level bleeding from stomach wall?
Has the specialist put him on any other medication to try first?
I was initially just on Omeprazole to reduce acid in stomach plus iron to replenish iron stores.
After very large bleeds had to start Budesonide.
If you unsure why not talk to Specialist again or seek a second opinion. Seems though as disease so rare very few gastroenterologists have treated CG. Did your sons gastroenterologist diagnose on first Gastroscopy? If so he/she must have viewed condition before.