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4 days ago · Collagenous Gastritis in Digestive Health

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.

Thu, Mar 14 6:33pm · Collagenous Gastritis in Digestive Health

Hi motherkat
What sort of symptoms has your son had?

Thu, Mar 14 3:20am · Collagenous Gastritis in Digestive Health

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.

Sun, Mar 10 8:39am · Collagenous Gastritis in Digestive Health

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.

Thu, Jan 31 4:51pm · Collagenous Gastritis in Digestive Health

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.

Dec 10, 2018 · Collagenous Gastritis in Digestive Health

Hello wendyt18.
I read your post Nov 1st. You said in that post your 15 year old daughter was to have appointment with gastroenterologist the following week at Mayo Rochester. Can you please say if medications were suggested/prescribed or if any other treatment eg. diet was suggested at that appointment. Did your daughter see Dr J. Murray or another gastroenterologist there? What advice have you received from them.
I gave outline of treatment prescribed by my gastroenterologist in my 27/10 posting.

I hope your daughter’s symptoms are decreasing in severity.
Budesonide has helped alleviate mine. Unfortunately I have had to weigh up long term side effects of medication vs frequent pain in stomach with gastric bleeds and then transfusions.
Thank you.

Oct 27, 2018 · Collagenous Gastritis in Digestive Health

It is good there is a Facebook Page to direct us to, to connect with other sufferers.
However, I would like to encourage other members CG Page to keep posting here too.
There are some who do not wish to be on FB.
Please keep posting here on Mayo Support too.
Thank you.

Oct 27, 2018 · Collagenous Gastritis in Digestive Health

Hello @alison486
I am sorry to hear about your daughter.
I have CG too I had my first large bleed 14 years of age and was rushed to hospital at that time. I am young adult now.
I suffered with gastric pain, especially when or after eating, most of my childhood years.

After my first bleed I had quite a few endoscopies before they properly diagnosed C.G.
Since then, I have been on Budesonide and Omeprazole. I also have regular iron infusions.
My medical team have not pushed me to make changes to my diet but I have read some sufferers say gluten free helps. Gluten free is often advised for auto immune disorders.
Not enough is being done, in the way of research, into this condition.
This is frustrating.

I wish your daughter well.