My niece had the same symptoms to the point where she couldn't swallow. The endoscopy showed nine ulcers in different stages. She is fine now.

Hopefully the endoscopy will give you answers to help you toward recovery.

Have you had liver enzyme profile? Mono?

You know I'm thinking of you. I have a friend with severe crohns and am really really glad that has been ruled out for you. I wonder what makes the good days good. That might be a place to start an investigation on why it goes so wrong. Just a thought. ((Hugs)).

Take it for what you want - when the neuro told me to go by a bag of weed the hiatial hernia and IBS is one of the things it helped

Yeah, well, it's amazing what you can 'do', when you don't have any other option.
I can't do what I'm doing, either, LOL!!!

I'm surprised they haven't ordered an endoscopy way before this, or have you just recently begun to seriously seek the cause?
I would think they'd want to check for Barretts before this went on for any significant length of time. Although that's more a result than a cause, I guess.

Did they put you through that really thorough blood test (my daughter's doctor called it 'the million dollar blood test'), to see if you're throwing up any irregularities that would point to an autoimmune disorder?
Lupus can cause the symptoms you're experiencing, too.

Well, whatever it turns out to be, I hope there's a treatment for it rather than it just be something you have to live with.

I was going to suggest seeing an infectious sidease doc just to rule out weirdo parasites and stuff. I have those issues too and the upper endo showed a hernia so the valve keeping food down doesn't work and I take 40mg generic prilosec. I coughed so hard before we knew I broke a rib. Now I still have some problems with that but the botton issues are still there after colonoscopies and lower scopes. TMI-but 5-10 minutes after eating I'm running to the bathroom...with a daily probiotic.I'm sorry your so ill...I hope you get some relief soon.

A good friend of mine has Celiacs Disease. I know you said you have been tested however, given my friend's experience please hear me out.

My friend said he was tested and the test came back negative. Then the doctor tested him again either using a longer timed test or a different test I am sorry I do not recall which and it came back POSITIVE.

My friend spent about a month in the hospital before they found this out and now he is doing well.

So just because the test came back negative in my friend's case did not mean that the negative diagnosis was correct.

Hope this helps.