Thanks for the insight DragonSlayer.
One of the reasons I remain undiagnosed is that my CRP and ESR levels were normal when finally tested last December. This was before I started NSD but I had already been eating a grain and dairy free diet for many years. While not completely starch-free, I was eating substantially less starch than the average person. While I still had a fair amount of pain, I suspect my diet limited my inflammation and was the reason my ESR/CRP were normal.
I have seen other posters note that after subduing their AS with NSD that their ESR/CRP levels don't necessarily elevate when they experience a flare, so pain level doesn't seem to correlate directly with ESR/CRP. I have begun to wonder if those tests are sensitive enough for the lower levels of disease activity that come with NSD. And whether they are most useful for longer term, full blown active disease among full-starch eaters. What is your sense of this?
On a personal note, the blind reliance on these tests for diagnosis has been frustrating for me. I was experiencing daily, persistent pain when I was tested, and my symptoms were real. However, all was dismissed when my test results came back negative. My PCP even suggested I might try eating full starch to see if my CRP/ESR would be affected, in order to support a diagnosis. Obviously I refused.
Suspected USpA. HLA B27, xray, u/sound, blood tests all -ve. Ancient history of plantar fasciitis, SI joint pain, knee arthritis. Recent history of tendinitis, neck pain, debilitating finger pain and stiffness (especially mornings). No diagnosis, no meds.
2010 - stopped eating dairy 2012 - stopped eating wheat 2014 - stopped eating all grains Jan 2017 - discovered NSD - 98% improvement in symptoms, continually amazed by my results, wish I'd found kickAS sooner
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