Undiagnosed GI disorder/disease

[Foxymina]

I'm a 37 year old female. I've been living with vomiting, diarrhea, constipation and abdominal pain for 5 years. I've had my gallbladder out 5 years ago. Ercp with complications (abdominal bile leak). Numerous CT scans, upper endoscopies and colonoscopies. Only thing they have found: h pylori (4years ago), hiatal hernia, ulcers (small intestine). Blood work has shown inflammation a couple of times. Gastric emptying test showed a slight delay. Ulcers in my mouth, fatigue, skin problems, under weight, arthritis and a white tongue. 1rst GI doc diagnosed me with crohns, but numerous test have been unable to confirm this. 2nd GI doc told me to stand up straight and I would be fine. 3rd and current GI doc says he doesn't know maybe IBS, maybe crohns. He is waiting to see if another symptom presents itself. I'm on numerous meds to control symptoms, but they do not seem to work with any consistency. Any recommendations as to the next step?

[Foxymina]

Yeah, my husband and I are discussing the Mayo clinic. Thanks for your replies!

[cnoevl21]

Hollistic doctor would be my suggestion. Or even going to one of the big time digestive disorder clinics in new york, chicago, or cleveland.

[Foxymina]

Breath test negative too. But I agree they just label it as IBS when they don't know. It also seems like its getting worse, foo I could eat 6 months ago makes me sick now.

[Foxymina]

Celiac test was negative (doc put me on gluten free and fodmap diet anyway). Tongue was scraped for yeast also negative. I eat half a scrambled egg, a banana, yogurt, and rice chex everyday. I'm also on a priobiotic and 2 medical foods: enteragam and ibgard.

[cnoevl21]

Tested for Celiac?
I get food allergy tests done to make sure you dont have any. Do a comprehensive stool study to check for parasites and yeast overgrowth. Though the white tongue is almost for sure a yeast overgrowth.
If you do not take probiotics, you should be, at least 15 billion cultures, probably more.
Hydrogen breath test would be good to, check for bacterial overgrowth.
Look around for a clinic that specializes with digestive disorders. To be honest, it really sounds like you havent seen a doctor that can help you. truth is, most GI specialist dont know anything. If its not celiac, crohns, or colitis, they just say you have IBS and send you on your way.
Another thought is to see if there is a holistic doctor in your area and see them. They tend to look past the confines of western medicine.
I'd also suggest going on a FODMAP diet. Its not easy to follow, but it should help with your symptoms for sure.