Thank you so much for posting your story.. I struggle being in limbo land for 2 years now.. I do thankfully get IVIG which keeps me afloat most of the time, but I fear that I have a crash around the corner at any time.. I started with GI symptoms as well. weight loss, frequent bowel movments, stomach pains, then numbness tingling, weakness, ptosis.. then muscle wasting.. ugh.. I was already gluten free when they did all the testing.. and have a history of not mounting antibodies (to vaccines and known illnesses that I have had)..

I have been strictly gluten free for 2 years.. but now that I am spacing out my IVIG to every 3 weeks my stomach is flaring again... as are my other symptoms too.. but I have always been curious if I am a neurologic celiac.. I have other family members who have celiac, and a sibling with crohns..

as far as your muscle wasting goes - where was it, how bad was it? This is my most worrisome sign/symptom.. though the neuros don't see it (which I am happy about that)... and the emg is always negative thank goodness!