Just Diagnosed with Small Fiber Neuropathy

I just got bloodwork back that shows gluten sensitivity again.( I have had negative biopsy for celiac ) Trying to watch sugar and gluten though not ready to go gluten free . Any diet suggestions would help. Just frustrated with all this at the moment. Pain and numbness still there. Cold Midwest weather does not help. Thank you for asking how I am.

Hi @boo55, welcome to Mayo Clinic Connect. You hit the nail on the head. Small fiber neuropathy is one big ick. I know it's not much consolation but you are not alone. I have idiopathic small fiber peripheral neuropathy. The neurologist thought it might be hereditary but no relatives close and it doesn't make much difference to know for the patient (in my non medical trained opinion). I'm not sure of other tests to determine the cause of the small fiber neuropathy but here is some information that may be helpful.

This short video by Matthew B Jensen Assistant Professor of Neurology, University of Wisconsin that gives a good explanation of how the different neuropathies are diagnosed.

@jana59 and @boo55 - I take a protocol of over the counter supplements - vitamins and minerals that help me and has helped others but may or may not help you. I found it in a closed Facebook group. The group has a website with a link to join their Facebook group - http://solutions2pnpd.com/. You can read my story and how I found the group in an earlier post on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

Hope you find some answers.

John

If you are sensitive to gluten and have neuropathy, you must cut all gluten (and sugar) out of your diet immediately. It may take a while to see the difference, but you're putting inflammatory foods into your body. I have SFN and have completely cut out gluten, sugar (including things like wine), dairy and all processed foods. If you're not ready to make those changes, you aren't giving yourself the opportunity to get better. It's not easy, but it is worth it!

Hi John. thank you for all of your input. This is very scary for most of us. I thought my neuropathy was from my back and pinched nerves, but now they say surgery won't help. My feet burn so bad I can't walk very much in the day and it's awful at night. I have atropathy in my left leg also.I'm trying to work on the leg a lot, but it seems to aggravate the neuropathy when I do.
I just wanted to ask you if you did the full protocol on the solutions program. I mean everything it said to do. it seems complicated to me and I can't seem to find the answers I need. You seem to help people the most.

Hi @peggyn, Yes, I'm still taking the full protocol of supplements on the http://solutions2pnpd.com/. It does take some time to read through all of their new member information material to understand how it helps you. You can't go specifically by the website. You have to join the closed Facebook group to read all of their material for new members. The website makes it convenient to order the different over the counter vitamins and supplements but the real help are the individual members and their experience and sharing. I don't have pain with my neuropathy so I can only say it has it has helped me slow down the progression of my neuropathy but that is subjective on my part. Most members in the closed group have been able to eliminate the pain associated with neuropathy and eventually taper off of the drugs. So basically replacing the drugs with the protocol. I still feel it's a win for me even though I still have some numbness since it doesn't appear to be getting worse.

Currently I'm looking into Myofascial Release Therapy that @jenniferhunter and @artscaping have found helpful. I just need to find some time and make a plan to do it. Here's a website that has more information:
https://myofascialrelease.com/
And...I see a new discussion has just been posted. Thanks @jenniferhunter !

Groups > Neuropathy > Myofascial Release Therapy (MFR) for treating compression and pain
-- https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

I created a new discussion about the benefits of Myofascial release and put a lot of information there to make it easier for everyone to reference the discussion. @johnbishop @peggyn @artscaping

I just got bloodwork back that shows gluten sensitivity again.( I have had negative biopsy for celiac ) Trying to watch sugar and gluten though not ready to go gluten free . Any diet suggestions would help. Just frustrated with all this at the moment. Pain and numbness still there. Cold Midwest weather does not help. Thank you for asking how I am.

If you are sensitive to gluten and have neuropathy, you must cut all gluten (and sugar) out of your diet immediately. It may take a while to see the difference, but you're putting inflammatory foods into your body. I have SFN and have completely cut out gluten, sugar (including things like wine), dairy and all processed foods. If you're not ready to make those changes, you aren't giving yourself the opportunity to get better. It's not easy, but it is worth it!

@boo55 Gluten free isn't that hard. if you eat basic stuff you prepare like meat and veggies and give up grains, you won't have gluten. Gluten is in the additives, the spices, sauces, thickeners, alcohol in extracts, etc. Gluten will cause inflammation in your gut, which will then cause a leaky gut, and that leads to other food allergies that will be permanent. That happened to me, and I am pretty restricted in what I can eat. Stress added to this problem. Sugar increases inflammation. So if you make these changes, you'll reduce your risk of cancer and heart disease and diabetes, and you're going to look younger. Who doesn't want that? I've been gluten free for 20 years from back when doctors didn't believe that this problem existed and wouldn't listen to me or test me with what they had at that time. You don't have to buy the gluten free junk foods. They are not great for your health anyway. There is linformation at celiac.com.

Here's a gluten free safe food list-
https://www.celiac.com/articles.html/safe-gluten-free-food-list-unsafe-foods-amp-ingredients/safe-gluten-free-food-list-safe-ingredients-r181/