hoob wrote:Seriously, why do you think starches are linked to AS?
Hi hoob! I know because of years of strict elimination diet testing while on zero meds. I was already a 100% starch solution eater when this started back in March of 2015. In fact, I was high starch; probably about 90%. I suffered terribly for the first 4.5 years...terribly. There were times I could not walk or see or move my head/neck and at times my whole body was in such pain that any movement made me scream out in pain. I truly was crippled. I played around with backing off starches and found some success. Also, fiber seemed to be my enemy as well. But as I tried one thing another issue would arise. For example, a low fiber white rice diet greatly minimized my AS pain, but caused me worse constipation (which is what I suffer from w/Crohn's) and severe depression.
I have not figured out anything for sure, just bits and pieces here that I'm still trying to put together in the larger puzzle. I turned to meds finally back in the fall of 2019 for much needed relief. I don't want to be on them, but the alternate is not something I'm willing to go back to right now and maybe ever.
hoob wrote:I remember when i was finally diagnosed and i found the sites kickAS.org and the spondylitis association of america I was dismayed at their claims that starches must be avoided at all costs. It just defied common sense that meats, fats, and a few greens were my only options. I, like you, believe in this way. As an aside, what about wheat? I notice you still consume it almost daily. Does it not affect you?
No, wheat/gluten makes no difference. In the last 5 years since this all started, I have gone over a year, twice, without eating any form of wheat/gluten and still had just as severe pains. Additionally, I have been tested twice for celiac disease and am negative.
hoob wrote:For the most part, this way of eating has remedied most of my issues. In regards to GI health, things have cleared up 100% as long as I stay strictly committed-- and also coffee free, i am sad to say.
That's great to hear and I'm glad this program has worked for you and some others. You will never find anyone with more will power and who followed this program to the letter more than me. Unfortunately, it has not helped any of my many autoimmune diseases. That is not an indictment on The McDougall Program; rather it is a indication that whatever is wrong within me seems to be permanent and incurable or is so vast it requires meds and/or specific strategies that I have yet to find. If you follow these forums, you will see that I am still one of the top advocates for The McDougall Program because I know for every human, they will experience their best health if they follow this program completely. I say that because despite my autoimmune disease pains, the rest of me is in exceptional health. My labs and vitals show that, my outward appearance shows that and I have people say that to me all the time and are surprised to learn I live in pain.
hoob wrote:The AS however, can still be a thorn even at the utmost compliance levels. I sometimes have trouble differentiating between "is this a flare" or "is this pain a result of the damage done". If they are flare ups, they are not nearly as bad or last as long as before the starch solution. Is that your experience as well? Nevertheless, I have sustained enough permanent damage and experienced enough chronic pain that i finally relented on the biologics. I really didn't want to do them either, but something had to give in regards to quality of life. Humira didn't really do it for me either. I respond well and quickly to Enbrel, although if you are still having Crohns problems I don't believe it addresses that. Good luck on the Remicade.
Kevin
Thank you! And I'm seriously happy for you that you have found relief and hope that your AS is in permanent remission and maybe will even recover some.
Part of me doesn't want to take another biologic and part of me does. Part of me wants to get off of Prednisone and part of me doesn't. Another complication for me is I have so many Autoimmune Diseases that cause me pains all over. I'm constantly torn about what to do, what pains to live with and how to move forward with my life. I will keep moving forward as my desire to live, enjoy life and be happy is unflinching. It's just going to always be hard I feel. :/
Thanks for writing. Let me know if you have any other questions, ideas, comments, etc.
Sincerely,
Scott
just kidding. 
