A brief history: Aged 35, I was diagnosed with AS, after a couple of years of gradually worsening back and joint pain until, finally I couldn't get out of bed in the morning. I now know this was linked to the 'growing pains' (doctors diagnosis, not mine) I used to suffer from the age of about 11, and the various, sometimes incapacitating, unexplainable hip and shoulder joint pains I used to get on a more and more, regular basis.
After my initial diagnosis and medication, which seemed to be having little effect, I went into a bit of a panic/depression, searched the web, found this site and tried some of the diets to see if they helped.
I tried the 3-day apple diet, which appeared to have absolutely no effect at all, apart from putting me off apples for a few months. I tried an exclusion diet for two weeks, where I ate nothing but chicken and broccoli, again nothing.
I then went onto the No Starch Diet. After a couple of false starts, finally, after a good six weeks on the proper regime, I started to feel a slight easing of the pain and I was gradually able to reduce my intake of Vioxx from the maximum dose. Two weeks later I had a day with No Meds, then I used them on and off for the next couple of weeks until I was able to stop all together…Wonderfull!!
I remained pain free for about 10 months, in fact I was so pain free I convinced myself the doctors diagnosis was wrong and there was nothing wrong with me, so I gradually gave up the diet (I guess I was in denial).
After a few months I was up to the maximum dose of Celebrex (Vioxx had been banned), which was having little effect so, no problem, time to go back on the diet I thought…
Well getting back into the pain free zone proved a lot more difficult than last time (perhaps the apple and exclusion diets had helped after all) and I came very close to asking for anti TNF drugs.
In fact, if I hadn’t been pain free before, I would definitely have given up.
I think it took about 4 months to get any noticeable improvement this time, as I seemed to be much more sensitive to certain food groups,
On top of the No Starch rule, the almond cakes I enjoyed so much first time round went out the window, so for that matter did, sugar, honey (deserts in general), almonds in any quantity and dairy (except butter). I think the bacteria had learned to live off dairy and sugar instead of starch. I also got caught out by silly things like instant coffee and tomato ketchup.
Anyway, finally after eliminating all these things I managed to get back into the zone again and have been pain and drug free for the last 7 months. I won’t be giving up the diet again in a hurry.
True to the theory of an indirect allergy to the aforementioned food groups via the Kelebsa bacteria, I now find I can tolerate moderate amounts of these foods as long as I don’t make a regular habit of it, i.e. if there is no bacteria in your stomach to eat the starch/dairy/sugar, you won’t have a problem, so I can go out for a curry now and again and eat everything, but if I eat a tiny bit of what I shouldn’t, often, the colony soon builds up and the problems start again.
I would say my pain levels vary from nothing to minor back pain or odd joint pain, having to take 1 Celebrex once in the last 7 months, which can’t be bad.
I do have a legacy from the times when I had the disease properly though, and that is shoulder joints that are pretty wrecked and strangely, ribs that click when I breath, which is annoying but, so far no problems with my once very painful hips.
My advice for anyone starting out on the diet is, keep it simple, test everything with iodine, if it goes black don’t touch it and keep off the sugar and dairy as well. It’s hard, but surely not as hard as not being able to move in the morning and feeling the damage this thing does to your joints…..
Also, take a good multi vitamin, Calcium citrate, vitamin C and a highly purified fish oil (not the cheap supermarket ones).
Give it time. If some people’s symptoms improve after a few days, mine improved after initially after six weeks, second time round it was 4 months. It must take others even longer to find out exactly what they need to avoid. Just don't give up. Once you get used to the diet, it's not actually that difficult to stick to either (maybe I have an unfair advantage because I work from home). The only problem is now I am a fussy eater when I go out, something I've never been or ever wanted to be as I've always enjoyed trying /eating new and unusual things.
Tips, if I can offer any, would be:
Coconut cakes. In the beginning, I had terrible trouble giving up the bread type starches as I felt I needed some type of stodge inside me, almond cakes (reduced sugar or honey) fitted the bill perfectly and I ate loads of them, I would substitute these for coconut cakes now, as they don’t contain any starch, unlike almonds.
Iodine. Essential. Someone has very kindly printed a list of foods and their starch content on this site and it's an excellent base to work from but, on testing some of the low or no starch foodstuffs with Iodine they show large amounts of starch i.e. cooked carrots and cabbage, which I personally didn't eat in the beginning, but now have little or no problem with.
Ginger. Many people here swear by it (I'm sure it works well for them). I took loads of it when I was on my exclusion diet and during the first attempts at the NSD diet. It did nothing for me, it may even have had a detrimental effect as it's is very starchy indeed. I now don't take any.
Finally Carol Sinclair’s book I found very useful as it gave me the will power to keep going with the diet (well reasoned arguments and her example to follow), it also gave me a more structured way of looking at foods, making lists of eat / don't eat etc...
Exercise…..ha! The mark one standby for the doctor who doesn’t have any decent alternatives, tell him to try swimming when it’s not possible to raise your arm because the pain is so bad in your collar bone, or you can’t even walk to the changing room because of the pain in your hip…..Don’t get me wrong exorcise is good for everyone, but in that state it’s almost impossible. It didn’t improve my symptoms as far as I can tell, although it may have lifted my mood, unless I couldn’t exorcise in which case it would be worse.
Anyway, at the start of all this, when I was feeling trapped and depressed at home, I promised myself that, when I got better, I would grab every opportunity to be active and outside in the fresh air as much as possible, and to that end, I bought some second-hand kite surfing equipment and a paramotor which I would learn to fly once I was able to pick it up and run with it.
Well, I have to admit, the kite surfing has not really happened (UK weather being what it is and being so far from the sea), but I have been flying the Paramotor, all over the country, since February and love every minute of it.
For those who don’t know what a paramotor is have a look at my Flickr sitehttp://www.flickr.com/photos/bedsheetflyer/
and click on one of the 3 small sets of photos on the right hand side.
Oh, and we start a new family in April.
Best of luck to you all.
PS. To George and all the regulars here, thanks for the excellent website, it has changed my life.