Oh heavens I am going to touch a subject I think is a bit untouchable today, I am going to discuss diet – the impact of what we eat on AS.
I do follow a couple of the AS Facebook groups and other blogs and Twitter accounts and so many people have something to say on food. What you should eat and what you shouldn’t eat, and I am now probably going to upset all the people selling me the perfect diet that’s going to cure me. It’s so prolific, it feels a little on a par with the religious cure…
I spent two-three years getting a bit fanatical about diet. Mainly the last period before I got diagnosed and went on to medication.
I’d gone through a stage where I’d just left my eating to my body’s own motivation and basically for months I lived on sugar filled quick fixes to fight the fatigue. I’m sorry to say I do still rely on sugar a little to get me through a day at work, at lunch time I will frequently pick up a snickers not because I fancy it but just because I know it’ll give me enough energy to keep going through the afternoon, when I’ve a hit a point I feel tired and faint. But at the point I went into hospital for the first time, when my fatigue was really bad, I’d got to a stage point where I was trying not to live on a constant diet of sugar, but doing things like eating porridge for breakfast, and eating all the super foods. I got addicted to red berries instead of sugar.
What was funny was the man on the course who had the fatigue as badly as I did, had also developed the same sort of diet. Neither of us had studied anything about diet before we attended the course but while we were on it, the conversation did turn to what we ate. People who had been diagnosed for a long time started sharing their views and journeys with food, and how this had impacted on them. That was when I discovered Carol Sinclair’s book on a low starch diet for IBS which said it also worked for AS. Yes I went out and bought the book. But hang on a mo, don’t rush off and do the same.
Carol talks about taking an Iodine testing bottle to test all your food for starch, and how eating no starch at all really helped her. Okay so minus the Iodine bottle, I did try it full on, and yes I think it did make my symptoms better… But I can’t never eat bread or cheese and biscuits, or… I like food, and besides that I’m sorry all dieticians who claim diet can fix all ills, it wasn’t a cure. My medication has been the cure.
The things I know I can’t eat are, yes, bread, does upset me, so I eat it in moderation very rarely and wash it through with something acid, orange juice usually (yes, I know dieticians that’s meant to be bad for rheumatic disease too, I had a blinking cab driver tell me that – but I like orange juice and it reduces my IBS pain). Raw onions they are bad for me, I should avoid them but sometimes I don’t. I do eat potatoes but again in moderation, I eat very little pasta, again I’ll eat it sometimes. I avoid bananas they seem to upset me, and I can’t have caffeine that seems to really disturb my fatigue and it is a little like taking a stimulant. But I figure you have to enjoy life, so you can’t avoid everything. I know the number of times I walk into shops, garages and café’s and just stand there thinking okay I don’t want pasta or bread or potatoes today… What the hell other food do you have that I can eat, and want to eat?? Quite often then I return the sugar quick fix – a chocolate bar, really not healthy.
But after my personal journey with AS and diet, I’ll be honest dieticians, sorry I stopped listening to you and just started working things out for myself, so please don’t guilt trip me, my life is hard enough without having to make it really hard to work out what to eat.
But do please feel free to comment and contradict me, I know some people are really dedicated to working through the diet thing, and I’m not saying don’t try it or keep at it if it works for you, only that it really didn’t work for me…
AS is my burden, writing is my escape.
And if you are looking for the best help to improve your Ankylosing Spondylitis then for me it was the AS course at the Hospital for Rheumatic Diseases in Bath, UK. This hospital is now threatened with closure, if you wish to sign the petition to keep this hospital open, please click here. It changed my life (You can attend as a private patient or on the NHS). And if you would like more information on AS take a look at National Ankylosing Spondylitis Society, NASS, website.