Hello, Sorry to hear about your diagnosis. It’s really hard to know how to best treat CG I because of how rare it is. This has been my 22 year old daughter’s experience with CG for the past 9 years:
She initially had symptoms of vomiting, stomach pain, bloating, slow stomach emptying and constipation. Her symptoms were treated with sucralfate and omeprazole for many years with pretty good relief. She tried an immunosuppressant (forgot name) with no change in symptoms. Currently she is weaning herself off omeprazole because long term use can have its own set of problems. She is no longer on sucralfate either. She tries to eat small healthy meals with fruits and vegetables and to pay attention to some foods that make her symptoms worse. Stress also seems to be a factor, she tries to exercise as much as she is able. She is now on Magnesium supplement, takes Tums occasionally, food-based iron supplement also because of chronic anemia (food-based to avoid more constipation). She has had follow-up endoscopies and hasn’t seen much change in her stomach lining. Sometimes she has to take Smooth Move tea and Miralax if she is especially constipated. She was seen by a homeopathic doctor to get another perspective, but was only minimally helpful. Her symptoms seem to be stabilized for now, but does have good and bad days. She has learned to live with her condition, but has taken some time to accept it. I wish you well in your journey to learn more about CG, I’m thankful for hearing about others in this community and any info that might be useful or treatments that might make my daughter feel better.