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.

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.