Ankylosing Spondylitis and diet

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.

Captured LoveOh P.S. My novella, Captured Love, telling the story of a subsidiary character from Illicit Love is now available on amazon.com/amazon.co.uk and is going to be FREE from 1st-5th September.

If you want to find out more go to my books page or my website www.janelark.co.uk  like me on Facebook or follow me on twitter @janelark

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About janelark

a writer of authentic, passionate and emotional love stories
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4 Responses to Ankylosing Spondylitis and diet

  1. Sean says:

    Hi Jane
    Everything that you say here strikes a chord with me.
    I have not have wheat or corn for 20 years – but do still eat rice and potatoes.

    I had first AS flares at age 19 – I am now 47 and have not needed any drugs other than the odd painkiller that I now try and avoid.

    The key to it all is intestinal permeability – which you have touched on with the IBS. I have had the same debate as you seem to have had with the “starch free” brigade – who are in some ways more restrictive than I am except they do not all except the protein hypothesis – I avoid all wheat regardless of starch content so I do not have beer, Guinness, lager, glucose syrup…

    If you have a few minutes then please read up on Zonulin – a protein that is produced by the body as a response to something in the gut that it does not like – and they have proven that the wheat protein gliadin produces this Zonulin release in All people (not just celiacs).

    Once your gut (tight junctions) opens up your immune system is exposed to a unhealthy wealth of proteins – dietary and bacterial.

    Btw caffeine stops zinc from being ingested – and zinc is key to many enzyme processes that cope with the immune response to foreign proteins – read deamination (celiac), citrulination (RA), adenosine (AS)

    Happy to swap more information if you wish – but do ramble a bit – so best of luck it sounds like you are working out!

    Regards, Sean

  2. Stacy Jones says:

    Hi. I have stage 4 klebsiella and have been dealing with it for years. It’s causing horrible gi issues and terribly joint/muscle inflammation and pain, among other autoimmune problems.

    Would u be able to share what a sample days diet looks like for u (sample bf, lunch, dinner, snacks)?

    Also, there’s a lot of conflict info I’ve found on the veggie starch content. Which truly are safe for nsd? The list on kickas is difficult to follow. And, there seems to be discrepancy on certain veg like
    cauli, cabbage, Zucchini and summer squash, winter squash, rutabaga, turnip, green beans or haricots verts, avocado, dulse and spirulina, sunflower butter, pumpkin seeds, mung bean sprouts,, Brussel sprouts, carrots… Are these safe? Which are and which aren’t? What veggies ARE your staples?

    Also, does fermenting cabbage into raw Kraut negate the starch, making it ok?

    Is your diet ketogenic? Do u also struggle with yeast overgrowth/candida? If so, how do u deal with this too? Do u avoid fruit? If not, which fruits are ok?

    Sorry for all the questions… I’m so grateful for your help… I haven’t been able to get any of these answered

    • janelark says:

      Hi Stacy, I’d love to be able to help, but I am not a dietitian, it sounds like you probably need to speak to someone who knows a lot more than me. I hope you find some help 🙂 x Jane

    • Night says:

      Even when I’m at the grocery store I use my cellular data and my phone to search out questions such as, ‘does chocolate have starch,’ or ‘do peas have starch,’ now I do you know acorn & spaghetti squash are very starchy but summer squash & zucchini are considered not. It becomes a way of life to research before you eat anything and that is a start. There are also extensive lists you can obtain through research online that name starchy foods & which are the highest starch food content. There you will find recommendations such as walnuts are OK if the skins are off, so soak walnuts until the skins come off, etc. There are very many directions for even doing that, but for much much more once you get the details understood involved in protecting yourself. I just searched chocolate yesterday because I found a chocolate bar that actually was sweetened with low glycemic sweetener, called Stevia. AS suffers should only eat low glycemic sweetener’s such as coconut sugar, maple syrup, etc. Turned out though the chocolate has cocao beans; the cacao beans are very high in starch. So I use coconut cream ice cream with lactose-free a2 milk (type a2 milk only which is tolerable for AS after lactase drops are added 24 hours prior to drinking) & coconut sugar as a sweet item.

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