Excuse any forum faux pas.. I've never actually participated in a forum.
It's fascinating to read everyone's story and unbelievably for the first time in my life I feel like there are people out there that understand what I've gone through and it's quite nice really. I've always just gotten on with things and tried to ignore my AS. Silly me for having waited this long to reach out to others.
I'm 42 and have suffered from AS since age 16 when I was formally diagnosed as HLA B27+, prior to that I had been diagnosed with Juvenile Chronic Arthritis from age 10. It has been quite a journey. I've done pretty well healthwise and looking at me you wouldn't know how much pain I've had in the past. Other than NSAIDs and the occasionally course of steroids, I've taken, sulphasalazine, methotrexate, infliximab, etanercept, adalimumab and secukinumab. According to my rheumie I've pretty much exhausted my options and so here I am typing with aching hands and a stiff neck trying to figure out how on earth to feed myself with a trial of a no starch diet.
I've been reading Tim Spectors book The Diet Myth with fascination and have read Carol Sinclair's book. I'm convinced the gut microbiome is somehow tied up to my disease but the number of theories and advice out there is quite overwhelming and I'm not sure where to start. Secukinumab helped with the symtoms but gave me terrible mouth ulcers that just would not heal I could barely eat for 2 weeks. It felt like my immune system had gone completely awry. I refuse to take any more of that drug. Well, I just wanted to say hello, I appreciate seeing such an active community and being able to read these very personal posts. The iodine tincture just arrived today and I couldn't wait to test my dinner. I was quite dismayed to see how starchy the carrots in the beef stew were, surprisingly Tokyo turnips didn't seem to have any starch in them at all. The Strauss family chocolate ice-cream turned black as well which is upsetting. There must be some undeclared additive in there, so dessert ended up as a bowl of strawberries.
After two weeks of cutting out the major starch offenders (but still eating popcorn..) I'm starting a strict 2-week NSD journey.
I think I might as well buy some kimchi as well.. fingers crossed.