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Ideas for pain relief from Small Fiber Neuropathy (SFN)

Neuropathy | Last Active: 5 days ago | Replies (449)

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@lisa53

I don't know if this will help anyone or not, but you might consider being tested for Celiac Disease.
I was diagnosed with small fiber neuropathy. My neurologist recognized that Celiac Disease could be the culprit. Sure enough, my SFN is largely in remission now - unless I get exposed to gluten - then I have a flare up of symptoms.
I have the atypical form of Celiac Disease with its extra-intestinal manifestations - which include neuropathy in my case. They now think I may have had Celiac Disease, undiagnosed, for two decades. Doctors often fail to screen for Celiac Disease because many still think of Celiac Disease as primarily having gut symptoms only. They are now realizing most cases of Celiac Disease take the form mine has. With raising awareness most doctors will think to screen people presenting as I do - but for now, most people who have Celiac Disease do not realize that they have it. I read that 85% of cases are undiagnosed.
If you do decide to be screened, don't stop eating gluten. You need to be eating gluten for the testing to be accurate. It is incredibly hard to avoid all gluten. It is in everything - fillers, extenders, thickeners, preservatives, as well as anything that contains wheat, rye, barely. There is also cross-contamination to deal with in order to avoid gluten. So, make sure you get tested first - and if you do have Celiac Disease - get a nutritionist to help you. Most of all, remember that the diet gets easier.

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Replies to "I don't know if this will help anyone or not, but you might consider being tested..."

This is great to bring up because it opens the door to anyone who has not had an extensive and thorough workup by their neurologist.

Every person diagnosed with SFN should have "the works" to determine your underlying cause. If you neurologist does not take this route then you have every right to ask for it, as long as you can afford of course.

My workup took 4 months to complete....from blood work to spinal tap. Leave no stone unturned.

Wow! That is really interesting!. I was tested for celiac several years ago, but the results were negative - so that's not my issue.

I was tested for Celiac and was negative. I asked my GP because my son was diagnosed with celiac disease about 20 years ago. The diet is soo easy now, with all of the gluten free items. I used to have to make his bread with about 6 different flours (rice, tapioca, etc) in a bread maker used for only gf flours.