The potential to develop an autoimmune disease is thought today to be inherited. So yes, it is always there for some people.

The leaky gut issue, is one way to develop one. There are spaces between the GI lining's cells called Zonulin channels.
It these are open, then large peptides (allergenic proteins) can leak into the blood and stimulate antibodies.

There was a study in 1999 that suggested NSAIDs block the Cox-2 protections in the GI tract that keep out peptides as well. So using drugs to block Cox-2 is thought to increase food allergies and intolerances. The study did not prove 100% but it was highly suggestive of the role of NSAIDs in promoting leaky gut.

The non medication suggestions however are not 100% effective either. There is not much in medicine that is 100% for trestments.

Thank you MrsD for all of your input. I do have one last question for you that I am hoping you can answer for me.

the PN in my hands is really weird, it isn't a numbness or loss of sensation so much, it happens randomly. Well, I used to think it was random but I have noticed lately that it happens after my hands get cold. My fingers turn almost white and then once they warm up, my fingers turn bright red and they hurt like hell. It's like a stinging, tingling, hyper sensitivity in my fingertips and my fingers burn. The uncomfortable sensations don't last too long, but it can linger a bit and have mini flare ups after.

It just happened after holding a glass of ice water and it happened yesterday after I went from my AC apartment into the humidity outside and it happened when I was out of town last week after I went swimming in a freezing cold lake.

Do you know much about this? Is this part of the PN too?

Did you have the test for cryoglobulins ?

Is that this one? Neutrophilic Cytoplasmic Ab IgG

If so, it was negative.

No
I'm too tired and brain fogged to write now, you can read about it here -
Cryoglobulinemia - Mayo Clinic

My skin is deathly white now but goes bright burning red when I warm up or go in a bath. Sfn damage can cause issues relating to erythromelalgia or that can cause Sfn. That mightn't be the case for you but the redness and burning pain with it could be something related to that. Sfn damage in itself will cause issues with blood flow in the skin so I think all sorts of issues can arise with it.
I spent months going down the restrictive diet route but for me it didn't halt anything. Alcohol and alot of sugar does however intensify the nerve pain. Cutting back on alcohol and sugar can only help.
Don't blame yourself. At the beginning of my problems I read every article going and still search many times a month now. The top listed articles on autoimmunity in all my searches were from persons flogging some book or diet. There was often the feeling that this was entirely in your control and if it doesn't work then it's because you just aren't trying hard enough. I now avoid those types of articles because I have no doubt there are often strong genetic tendencies towards these things. I know people who abuse themselves terribly and not a dicky wrong with them. Some of us are sadly more susceptible to whatever external factors may have triggered it. But like you I still often feel responsible, and wonder if crying too much brought it on!
I got through a few neuros, only the third for me knew what he was talking about. I pursued the skin biopsy myself after researching it.
I don't think the methotrexate would help the neuropathy but I asked my neurologist about having more than one drug and I understand methotrexate can be used with other disease modifying drugs like steroids. The key things to try for suspected autoimmune neuropathy would be intravenous steroids and ivig.
I'm only 36 so feel the same upset at what has unfolded at a relatively young age. Like you Im so grateful I had an eventful 20's! Still crap though.

That sounds like Raynaud's phenomenon. I've had that in the past and yes, it hurts like hell!

"Raynaud's disease signs and symptoms include:
Cold fingers or toes
Color changes in your skin in response to cold or stress
Numb, prickly feeling or stinging pain upon warming or stress relief
During an attack of Raynaud's, affected areas of your skin usually first turn white. Then, the affected areas often turn blue and feel cold and numb. As you warm and circulation improves, the affected areas may turn red, throb, tingle or swell. The order of the color changes isn't the same for everyone, and not everyone experiences all three colors." (mayoclinic.org)

Alessio Fasano, a gastroenterologist and leading expert on celiac and autoimmunity, has written a very accessible and short article on the subject. I can't find the entire article online, even though it's only a few pages long. Here is a link to the one I have in mind: Leaky gut and autoimmune diseases. - PubMed - NCBI. Think of it as a triangulation between genetic susceptibility, environmental triggers and the gut. As the abstract of the article states, "This new paradigm subverts traditional theories underlying the development of these diseases and suggests that these processes can be arrested if the interplay between genes and environmental triggers is prevented by re-establishing the zonulin-dependent intestinal barrier function."

What's interesting is that traditional medicine has thought this in one form or other for centuries going back to ancient China and Greece. Fasano's account is more detailed, nuanced and based on trials and conventional science, so it's a step forward. But what remains true is that intestinal permeability and zonulin deregulation are key to this terrible process.

I have SFN likely of autoimmune etiology, though still not certain, and I have had great results from healing my gut. Diet and supplementation aimed at healing my intestinal barrier, so leaky gut, has been the only thing helping me so far and allowing me to avoid meds entirely and to live relatively normal life, emphasis on 'relatively', since SFN takes a lot out of you. But perhaps in a few years time I'll be in a better place. Healing the damage I've done to my gut over many years will take many years itself.

Here's an article by him that I could locate: Zonulin, regulation of tight junctions, and autoimmune diseases

Good luck!

That is strange - do you have any non-immunological clinical signs of SLE?

My guess is that in some auto-immune diseases there may be tissue damage leading to release of nuclear antigens (Ro and the other ANA targets). These intra-nuclear antigens are not usually "seen" by the immune system so there will be production of antibodies specific for them.

If I am right all this says is that there has been some tissue damage - an elevated ANA titre confirms this and may be important in a diagnostic sense but does not say much about the underlying pathology of the auto-immune disease.

Hi David,

The links are really interesting reads, thank you. I'm always interested when the articles aren't trying to flog a book or diet.