@emewood, I can really relate to your story. I was diagnosed when I was 18 and I am now 20. I was starting my freshman year in college. I have since left school because it was just too difficult and stressful to be there. I am now taking classes (mostly online) and living at home. My symptoms never included bleeds but I have had discomfort and pain every single day. I have tried many medications/steriods for the collagen and my various symptoms but to date, nothing has helped except for pantoprazole which has kept my heartburn under control for the most part. My GI is firm in believing that food does not play a part in how I am feeling. I cut out fried, spicy, acidic and rich foods 2 years ago and do not drink caffeine. I tried gluten free for a period of time even though I am not celiac. It seems as though you truly believe that a change in diet made an enormous difference. May I ask how long it took with the diet until she felt it was working?
I also get car sick and always sit in the front seat. I had not heard anyone else mention this symptom. Can you recommend a ginger product that she has had luck with?
Also, I have decided, just like your daughter, that I would like to be a pediatric nurse and will be applying to nursing programs this year. Our experiences make us uniquely qualified and I wish her the very best in pursuing this goal.