Replies to Thanks for sharing your experiences and knowledge about this rare disease . My daughter 13 yrs…

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Digestive Health | Last Active: Feb 21 5:28pm | Replies (459)

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@littleangel

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 .

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Replies to "Thanks for sharing your experiences and knowledge about this rare disease . My daughter 13 yrs..."

Mindi | @mindi | Apr 5, 2019

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.

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