Thank you for your reply. I'm sorry that you also have been going through this. My daughter was diagnosed about 5 years ago and has been hospitalized around 10 times because of those bleeds. Same thing, by the time they are able to go in, they are not able to pin point where the bleed is happening. It has been such a scary and frustrating journey , not having a specific treatment or diet that helps with CG since it so rare. Have you tried any specific diets that you feel have helped you? What do you they currently have you taking ? Thank you again for your time. Hope you also feel better .