Jon's NSD Success Story
Hi my name is Chelsea and my husband Jon has AS. He was diagnosed at age 28 within about 8 months of his symptoms beginning. It all started with just some lower back pain in August 2003 but by November 2003 the pain was spreading to other parts of his body. He made repeated visits to the doctor and physiotherapist trying to get to the bottom of it as he knew it wasn't just a pulled muscle. He started taking the anti-inflammatory Votaren to try and help but it didn't really even touch the pain. In the end it was the physiotherapist that realised it must be some kind of arthritis and so we booked in to see a rheumatologist in April. By February 2004 the AS went full blown and this was really scary for us both. He was diagnosed in April 2005 by the rheumatologist and was given a prescription for Bextra and told to come back in June.
Jon's symptoms were very severe and aggressive and soon he could hardly walk. He had severe pain in his middle and lower back. He had pain and swelling in his heels, ankles, knee, elbow, shoulder, and a couple of toes. When I would ask him his pain level he would say 8 or 9 out of 10. At this stage he began wheeling himself around the house on his computer chair to avoid walking. Needless to say we were both getting very worried as he runs his own painting business which requires him to be on his feet all day. This was pretty much impossible and our finances weren't looking too hot as we can't survive on my salary alone. Seeing Jon like this really broke my heart and we were both falling to pieces.
I began desperately reading up on AS on the internet, trying to find what treatment would help him but all I could find was drugs drugs drugs and none of them promised much either. All the websites I read presented no hope for the future - just a slow and painful worsening until he would be crippled. The more I read about AS the more terrified and heartbroken I became imagining what Jon's future held. I would cry all the way to work and all the way home but then put on a happy face for Jon and try to be strong and supportive for him until bedtime when I would cry and cry. Here in New Zealand the biological meds were not available (cost too much anyway) and the side effects of all the other drugs were terrifying to us both and Jon wanted to avoid them as long as possible. I tried researching diets for arthritis but they were mostly for rheumatoid arthritis and were all very vague and offered no logical reasons for why not eating certain foods would help. There seemed to be no pattern to what was being eliminated and no scientific reasoning to back it up. I was skeptical of "natural remedies" and wary of quackery.
Then one day I stumbled onto KickAS and found out about the No Starch Diet. I went home that day so excited after reading of other's success with the diet. When I read the techincal papers by Prof Ebringer explaining how the diet worked, it all really made sense to me and gave me so much hope. I presented the idea to Jon and expected him to say "No way" as he really loved his food (especially junk food), but he said yes straight away. I guess he was desperate enough to try anything to escape this pain.
He started the diet in June 2004 and went very strict straight away as he really wanted to get better as soon as possible so he could go back to work. He noticed a small reduction in swelling within the first week which gave him hope that it was working. At the end of that week we went to see the rheumatologist and he scoffed at the idea of a diet helping. He gave Jon a prescription for Sulphasalasine and said come back in 2 months. We never did go back and Jon never took the sulphasalazine because the diet DID work.
Jon began to improve slowly within 1 week of starting the diet. It took us about 3 months to get the diet straight and figure out exactly what he could eat. He didn't really improve much until he also eliminated dairy products and that's when his improvement really leapt ahead. What helped us get it right (besides coming here to KickAS) was the book "The IBS Low Starch Diet" by Carol Sinclair. That helped us get started by spelling out exactly what is starchy and what is not. It also explained how to test food for starch using iodine, which has proved to be very helpful.
He continued to make slow and steady progress. After 9 months on the diet he didn't have to take pain or inflammation medication anymore. He has no swelling anywhere and only some minor residual lower back pain (level 1 to 2 out of 10). He now works fulltime again and stills runs his own business. If he strays from the diet his symptoms begin to return. So the diet keeps his AS suppressed. He seems to be quite sensitive to starch and cannot stray from the diet at all but he has only been on it for 16 months so far and we are hopeful that in the future he will continue to improve and may be able to experiment a bit more with "fringe" foods. But he is not rushing anything as he is just so grateful to have found a way to help himself and be in control of his illness.
We have just started supplementing with Natren's Healthy Trinity Probiotics and hope that these may also help fight the klebsiella bacteria. He also takes starch free supplements every day: cacium with magnesium and boron, a men's multivitamin, a high potency B vitamin complex, and aloe vera juice.
Like Tim, he has also found the 3 day apple diet to be very helpful. When he was still having bad flare ups (mostly due to accidently eating starch) he would do the apple diet and it was the best and quickest way he could get out of the flare.
So now, thanks to KickAS (and especially Tim and John - you guys are my heroes
), I have my husband back and our future is full of hope not dread.
My advice to anyone contemplating the diet is - just do it. It takes discipline but the results are worth it.