Quote:
Originally Posted by Fiver
Hi APJH,
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 |
Fiver, thank you so much for your post. It did go up properly--nice job!
As this new year began, I made one resolution: to keep investigating what could be causing my SFN in order to treat it. I've been suffering for a year and I'm fed up with being in pain and being slowed down by SFN.
I started seeing a nutritionist last month and she wanted me to spend 2 wks eliminating toxins from my body before going forward. So I've eliminated all chemicals and what she calls "Frankenfoods" (anything artificial or processed). So... no more high fructose corn syrup, aspartame, artificial sweeteners, hydrogenated oils, soy lecithin or other chemical additives.
I will follow up with her next week and talk about eliminating specific food groups. If she thinks celiac disease could be lingering, I will make an appt. at the Celiac Center. (Thank you so much for the recommendation!)
Also, after a severe migraine put me in the hospital last month (never had a headache anywhere near that severe), a CT scan revealed that I have some hardened calcium deposits in my brain. Nothing to worry about, the docs told me, but...yup...I went straight to Google and found some links between calcification and nerve problems. So I will discuss that with my neurologist when I see him next week.
Thanks to all for your advice, recommendations and support!
Here's to less pain and better health for all of us in 2013!
Best,
APJH