Collagenous Gastritis

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.

Thanks for sharing your experiences and knowledge about this rare disease . My daughter 13 yrs age was diagnosed with similar condition with only complain of asympomatic iron deficiency anemia /Hashimoto Thyroiditis 9 months back . Her haemoglobin was 6 with low Ferritin level in the blood which was not responding adequately with oral iron supplement . Strangely The non specific marker for coeliac disease (Anti Gliadin AB ) was positive but specifc markers ( Anti endomysial /Anti TTG ) were negative . Am not seeing anyone commenting on such findings . Any idea where I can get more information about this . Appreciate if you can share the doctor in Mayo clinic e mail ID that I can discuss the findings with .
Best wishes and pray for your recovery .

Hello @littleangel Sorry to hear your 13 year old daughter has been diagnosed. You say a similar condition so is it Collagenous Gastritis or does it have a different name?

I was around 13 when I had my first blood test as I looked pale and anaemic. My Hb was 8 but my Ferretin was only 4. I was still playing sport with no problems totally unaware there was a problem. At that point I was put on oral iron.
It was about two years later finally had Gastroscopy and diagnosed with CG.

When I was found to be anaemic at 13 years they did blood test to check for Cealiac Disease but was negative.
When I finally had Gastroscopy, followed by many more Gastroscopies, I had tissue biopsy checked. I have always been negative so Specialist has never advised me to avoid gluten. Sorry I don’t know name of tests I had done but I believe the tissue biopsy via Gastroscopy is the definitive test to diagnose Cealic Disease.
Has your daughter had Gastroscopy and tissue sample done?

I cannot help you with email contact for Specialist Dr Mayo Clinic. This would be Dr Joe Murray no doubt. Did you see the two videos he has posted on You Tube about CG? They are included earlier date Mayo Connect so if you go back should find.
Perhaps one of the other members or a Moderator could assist you with how to contact him. However, im not sure who the Moderators are on this page this year.

Please post again as interested to know if your daughters condition is CG or something similar.

I was diagnosed w/ CG December 2018.....i am 37. I am on ppi- nexium daily. Have had stomach pain, acid and IBS for years. On and off iron deficiency. Had iron infusion in December x 2. I did a 6 week pulse of budesonide liquid twice a day. Tried a gluten free diet for 6 weeks after that. It was missed with the first EGD 2 years ago but with severe iron deficiency, weight loss and pain they took another look. The 6 week pulse was in dec/January and now I’m starting to feel pretty bad again. Wondering if another round would calm it down.

Where do you live?

My husband was diagnosed with collagenous gastritis and microscopic collagenous colitis. A colonoscopy and an endoscopy confirmed the results. He is being treated with budesonide, sucralfate, omeprazole, and lomotil. My husband is 72 years old, his symptoms for two months were extreme diarrhea, and weight loss with blood in his stool. He has always had a healthy diet. This illness has stopped him from working and fear of being too
far from home. It has changed our life. The affect of the drug treatment and change of diet has been positive, he is weaning himself off the lomotil, has gained back 2 pounds. It came out of the blue, we are adjusting.