Quote:
Originally Posted by DavidHC
So I have question. The cause of my SFN is still unknown but autoimmunity is the leading suspect. Diet and stress are the biggest factors/triggers when it comes to my symptoms. I'm wondering if these two factors necessarily implicate autoimmunity or whether others with known non-immune mediated SFN (ideally full body like mine) also have diet and stress as immediate and obvious triggers. So does everyone with SFN (or at least some who have non-immune mediated etiologies) have worsening symptoms when there are stressors and when they eat, say, gluten, nightshades, or whatever is a trigger on the diet front? I'm inclined to think yes, and that it's niot necessarily the case that autoimmunity is at work here, but I'd appreciate hearing from actual people who have had experience with this. Perhaps I'm wrong here, and full body SFN the symptoms of which are worsened by these two triggers necessarily has an autoimmune etiology.
Basically I want to get some idea regarding whether it could just be that my SFN is caused by my leaky gut and SIBO (bacterial overgrowth) and whether healing my gut and dealing with the bacteria will address the problem, or whether I've already triggered an autoimmune response in my body, which would be a whole other beast. It's partly for motivation, partly for hope, since the former problem would be much easier to deal with. I should say that we've found no hard evidence of autoimmunity as of yet, not just a particular disease, but not even a single marker, say ANA.
Thanks!
|
David you asked for non-autoimmuners to give their penny's worth on this question about diet. I am as autoimmune as they come but I wanted to tell you something I've observed in my five year battle for answers. I have experimented with food eliminations to very little effect. The only trigger I can find is heat. If I have a hot bath or shower my legs and hands rage. If I eat or drink hot foods (spicy too - but mostly I mean temperature) then this invariably triggers a flare that will last for hours, sometimes a whole day or more.
After being told by a rheumatologist in January that I clearly did not have a connective tissue disease and my previous diagnosis of RA was up for review and certainly wasn't active - and with wholly negative antibody panel - I decided to go for a Coeliac test. After five years of being mostly gluten free I wanted to be sure that this really wasn't the cause of my all body SFN. So I did the gluten challenge with brass knobs on - cheerfully eating much wholemeal bread, pasta etc on a daily basis for several months. Then I got myself privately tested in a nearby clinic and it came back entirely negative but with a high IgA as is my usual. So I resolved to stay dairy free because of my bizarre and persistent constipation (which preceded the gluten challenge by several months) and stick with occasional whole grain breads and other non refined wheat and gluten.
Then a new rheumatologist in a new hospital retested all my autoantibody panel - this time when I had been off steroid medications and antinflammatories and all RA meds for a year. Bingo the ANA came back at 1:320 with a Nucleolar pattern, my IgG and IgA were both raised, as was my compliment and ESR was even higher than usual at 82 - CRP of 18 which is a bit raised. On the strength of this I had a lip biopsy in July and all of my salivary glands came back with high clusters of lymphocytes meaning I was diagnosed incontrovertibly with Sjogren's. My rheumatologist said that he hadn't expected the lip biopsy to yield such a definite result because my mouth and eyes are only manageably dry and my teeth are in unusually good shape for someone with primary Sjogrens. But the SFN and high ESR and total protein plus other new results told him that the biopsy was necessary for elimination purposes. He said he couldn't recall the last patient who had a positive result like mine. My main symptom is still SFN bad it is flaring like mad with stress just now. I take nothing at all for it - just try mindfulness and try to ride the electric storm as best I can. Knowing what is causing it helps immeasurably though.
The ESR and protein levels are often high with Sjogrens sufferers, not only as part of the inflammatory disease process, but because the blood is very intense due to lack of moisture. This should, but often isn't, part of the diagnostic criteria for Sjogrens.
Now I don't know if my ANA was ever tested prior to all the medications I was given for RA, so I can't say whether it was reverting to a glutenous diet that swung things at last for me, or whether it was the absence of any medication that could remotely skew things in my blood. I suspect it was the latter. But I've continued to eat a balanced diet with no food elimination apart from dairy. And my Sjogrens SFN waxes and wanes regardless - presently horrendous. If I'm not offered any immunesuppressant medications, IViG or Rituximab for my SFN then I will go back to being gluten free because I realise that some are intolerant even if they dint have Coeliacs. Due to symptoms and the pattern of my ANA i still think I also have Scleroderma, but am just focussing on the Sjogrens for now and hoping I'm wrong.
But personally speaking no food group elimination has ever remotely affected my SFN or any other of my symptoms over the decades. I eat very healthily and completely avoid caffeine and refined sugars and I genuinely don't find that gluten affects my autoimmunity at all.