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Fri, Apr 5 7:52pm · Collagenous Gastritis in Digestive Health

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.

Wed, Mar 20 9:32am · 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?
Thanks

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.