I'm so sorry your daughter has gone through such agony, and neither one of you have any answers. If it's any consolation, I also have similar symptoms as your daughter; rheumy believes I am in the prodromal phase of IBD (ulcerative colitis or crohn's). One GI doctor found ulcers in my colon, but says I do not have IBD. Another GI doctor says I have ulcerative colitis at office visit, but after a normal colonoscopy, she says I have IBS (I had the colonoscopy after several months of several drugs that are known to heal colonic ulcers). Finally going to a 3rd GI doctor next week, and we'll see. Is your daughter getting treatment for any of her symptoms? When my rheumy put me on enbrel for my arthritis symptoms (or humira for that matter), my lower GI symptoms disappeared. They didn't resurface until I stopped taking enbrel a couple of months ago. If the GI doctors are not giving you any answers, you might consider taking her to a pediatric rheumatologist. He/she might recommend going the way I did--simply starting a tnf-inhibitor because they cover both inflammatory arthritis and IBD. For me, they were very effective, especially with the GI stuff. Best of luck, and I hope you get some answers soon.
Current dx: Rheumatoid Arthritis
Suspected dx: UCTD/Early Lupus
Current Meds: Enbrel, Plaquenil, Aciphex, Ultracet, Zyrtec, Allavert-D, Zantac, Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan