Hi APJH,
I am new to this board, and recently stumbled across your earlier post (from May when you were recently diagnosed).

This is not in reply to your most recent post, but to your earlier one. You said causes had been ruled out. I saw there were then some discussion of Vit B12 (worth checking into and I am certain that was useful). Someone pointed out there are recent changes to the concept of what constitutes a low B12.

Did you know that some of the blood tests can turn positive (for certain antibodies, such as for Lupus) even 2 years after the initial diagnosis of SFN. Some doctors seem to believe these antibody tests should be repeated every 6 months or so for a couple years after a SFN develops, and one initial negative test is not necessarily a full rule-out (as the SFN can precede the positive antibody status).

Second thing I wanted to mention: there is such a thing as antibody negative celiac disease. We have it in my family. Some members were antibody positive (mostly the younger people) while the adults with it have been serology negative (even with what was in retrospect obvious celiac, including lactose intolerance, weight loss, etc, and then damage to villi). I have also seen so-called "silent celiac" (no gastro symptoms but other damage which is shown on full workup).

So my advice is make sure you don't have one of the stealthy forms of celiac. If you don't mind me saying it, I would not rule it out based on one negative blood test.

Since you live in NYC maybe you could make an appt at the Celiac Center at Columbia. They are terrific. Very helpful and they will get it right. Many/most physicians (even great ones in other ways) do not know the ins and outs of celiac. If it is celiac then a gf diet would treat the SFN, it might even cure it.

Good luck. I hope this was helpful. And I hope my post went up properly, as this is my very first post to this board.
Merry Christmas!
Fiver