Step Back

by on June 8, 2011 in ankylosing spondylitis, Diet, klebsiella, Low Starch, Paleo

I’ve had to take a step back from some of the support websites I visit because of the negative attitude expressed by so many AS sufferers in regards to dietary treatment.  On one particular website there are many folks who aggressively dismiss the n0-starch diet as a placebo, with condescending “acknowledgment” that,  hey, if it works for you, great.  The placebo effect can be powerful.  Shitheads.

I know for a fact that this diet works to keep my symptoms at bay.  I’ve spent a years chronicling the effects that starchy foods have on my pain- it has gotten to the point where if I feel some sudden flare (like right after Halloween when I ate some of my daughter’s candy) that I can usually look back over the last 4-7 hours at my diet and pinpoint the culprit.  In the above example it was corn starch in highly processed candy.  A no-brainer, but we all have our moments.

I hate to add to anyone’s suffering by endorsing a diet that works for some but not others, and I’m sure that this diet is not a panacea. Life is mysterious and this disease is cruel and unpredictable.   It seems obvious to anyone with AS that there are various AS types- some folks are burdened with an especially aggressive type of disease and are quickly dealing with multiple fusion locations and severe, debilitating pain.  The key for folks in this category (really, for anyone suffering from a chronic, painful disease) is to ease their suffering right away.  To get their pain under control.  Drugs are the best way to do this.  I repeat: drugs are CLEARLY the best way to get AS-associated pain under control.

Dietary control of AS is typically a long-term solution, but sometimes sufferers get relief within days.  I know that when I went to a no-starch diet I got immediate relief from pain, but then it took me over a year to really dial in the diet to the point where I had ruled out my “trigger foods” and was operating for very long periods of time with absolutely no flares.

For people on these AS support websites and blogs to callously dismiss a fellow AS-sufferer who has found relief through dietary means with an off-hand remark is insensitive at the very least and cruel at worst.  I personally find it maddening that someone who suffers from the kind of pain that we have both experienced would be so completely insensitive and dismissive of a fellow sufferer.

I’d like to say something to the people responsible for the dismissive and condescending remarks on behalf of those of us who’ve found blessed relief from our pain using diet…but I can’t speak for everyone on the NDS.  Most of them are very polite and don’t rise to the baiting and insulting remarks on some of these other forums.  I can only speak for myself.  So from me to all the people  who  have posted callous remarks on other websites dismissing the no-starch diet as a placebo and those of us who’ve found relief as advocating a “pet diet” which has no scientific basis in reality I say: fuck off.

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  • http://pulse.yahoo.com/_GHS7D3UQL4VETCQ6EFYOA2OJYI Anonymous

    I have been on the London AS diet since 15 Jun 11 and have had tremendous results.  I went iodine bottle crazy from the get go and eliminated all starches from my diet.  My energy levels returned.  I also sleep better at night and only need 8 hours of sleep to start my day.  My daily fatigue also disappeared.  Of course you have to FOLLOW THE DIET RELIGIOUSLY!  This means no starch.  Do not be a typical american and follow the diet half-heartedly…..it will not work!  If you want uncommon results, you will have to take uncommon measures.

    You have to ask yourself if it’s worth a good solid try, all you have to do is JUST eat meat, fresh fruits and vegetables.  Throw me in that briar patch!  I also eliminated all dairy products from my diet.  I plan to try some dairy products at a later date to see how I respond to it.   

    Here’s something to contemplate while you decide to try the diet…….
    If you give me control of your diet there are several things I can do to you, I can give a normal healthy person diabetes, I can make a normal healthy person obese, I can also make you morbidly obese,  If you’re allergic to peanuts then you can die from anaphylactic shock, if you only eat at McDiabetes for one month you can almost kill yoursell (see Super Size Me.)

    Now ask yourself two questions….If food can do all those bad things to you then why can’t food heal you and what have you got to lose?

    Tim…

    • Bob

      Hey Tim,
      Nice talking with you today. Keep up the great work with the diet and come back w/an update when you have a chance.
      Bob

    • http://www.sickopportunity.com Bob Connors

      Thanks for the comments, Tim.  Nice talking with you today.  Be sure to stop back and let me know how you’re doing on the diet.

  • keith_nufc1

    Good for you Bob. I am having the same success (although much slower, after 18 months). Kep up the good work.

  • Anonymous

    Hey Bob, My name is Ben and im from London.  Firstly I think your blog is fantastic and really eye-opening.  If anyone is questioning starting this diet all they need to do is go to event with lots of elderly people suffering from AS – the moment you do i promise, bread and pasta will be the last thing on your mind.
     
    In our recent correspondence you spoke of a lot of exercising and fasting.  If I do that and the diet what can I expect? No more fusion? No pain? People will not notice me walking funny?
     
    Can you be specific!

    • http://www.sickopportunity.com Bob Connors

      Hi Ben,
      Thanks for your comments.

      Unfortunately, any fusions you have now are permanent as far as I know.  But if you can avoid future flares then you can avoid additional fusions.  If you start to find some success with the diet then you should be able to avoid future flares and thus avoid future additional fusions.  Wish there were a way to turn back the clock on the fusions, but I don’t know of any way to do so.

      I’ve found that I’m pretty much pain free on the NSD (no starch diet).  I generally do not have pain. 

      As for walking funny I’d say that if it’s associated w/your pain then you should be able to get back to a normal stride, but if it’s associated with fusions then you may not be able to return to a normal stride.  I know that previously limped around quite a bit back when I was first diagnosed due to severe pain in my hips and ribs.  I don’t limp any more. 

      Fasting is key to my overall health.  I use intermittent fasting on a daily basis whereby I eat from about noon-8pm, and then fast from after 8pm to noon the next day.  Basically, I skip breakfast every day and eat my first meal at lunch.  I also do one dinner-to-dinner fast per week (so a 24 hour fast).  Eat dinner on a Wednesday night and then I don’t eat again until dinner time on Thursday evening. 

      Hope this is specific enough;-)  I skip the starch because starch feeds the Klebs.  No Klebs means no flare.  No flare means no pain.  Thank God for the NSD.

  • Kim Davis

    Bob, 

    Great blog.  Great post.  I was diagnosed 2 months ago and am slowly tweaking my diet to see what works.  I’ll be checking your site often.  I’m so glad to hear you have found lasting relief.  I’m taking a Enbrel right now (it’s a love-hate thing) but I’m hoping that it just buys me time til I find a more sustainable solution to this madness.  

    Thank you again for sharing your experience and knowledge with us.  I’m a fan.  

    Kim 

    thriveoutloud.blogspot.com

    • http://www.sickopportunity.com Bob Connors

      Hey Kim,

      Thanks for your comment!  Yes, please do check back often and let me know how you’re doing.  I’ve heard of many people with AS in the same type of love-hate relationship with Enbrel.  One recent commenter on my blog said he’s having such good success with the diet that he’s likely going to skip his next infusion.  So there is hope! 

      Keep at the diet and treat it like a job at first.  Slowly changing my diet didn’t really work for me- I had to go completely no-starch to get results, so if you hit a wall or feel frustrated that you’re not progressing on the slow approach then you may consider jumping into the NSD completely. 

      Let me know if you ever have any questions as I’m happy to throw in my two cents.

      Good luck!

      Bob

  • mmc.forums.tricks

    Oh, thank god for YOU. 

    I am recently diagnosed. Not in any more pain than I can shoulder, and new to the NSD. I thought I was going pretty strict already, and am feeling much better than I have in years. But, I realize from your blog that I can “throw myself in that briar patch” as Tim says, and change my life.

    I also use other sites, and have found so much help and inspiration there, but you are right. There are always some people who for some reason feel they must pop in to the diet threads and put it down, or discredit it to new users. I even had a thought earlier today of one particular person who seems to almost take pure joy in steering people toward drugs over diet and exercise. I thought, what the hell… is this person a big pharma plant????

    I immediately felt bad for my own thought, even though I made no public mention of it. I just don’t understand why, if I can choose to approach my AS in a natural way, yet be sympathetic and understanding of people who have a more aggressive case, or feel their only option is drugs… Why can’t they be equally understanding that the NSD is a true blessing for so many former sufferers.

    I chalk it up to what I see every day at work. People on diets to lose weight. One little cheat won’t hurt me, or I have one cheat day a week. I was formerly guilty of this when dieting to lose weight.  I also have coworkers with diabetes, who save up one big dose of insulin a day to stuff themselves with an insanely HUGE meal chock full of poor choices, instead of several small sensible choices per day, that may lead them to a lesser need for insulin.

    People are going to eat what they WANT to eat, and justify it to themselves and the world however they can. Some people may have a definite need for biologics and tnf inhibitors, while others may simply be choosing potatoes and pasta and ignoring the potential side effects of said drugs. I carry my meals to work. People ask questions. I answer. I get a lot of, “Oh, I couldn’t LIVE without pasta!!!!!”

    Sister, I can’t live WITH IT.

    I admit sometimes I want REAL bread or pasta. But all I have to do to push the thought of it far from my mind is to remember the pain it WILL cause me, and the potential it has to destroy my spine. No thanks.

    I urge any sufferers of AS who are curious about the NSD to give it a real go. It’s really not as daunting as some would make it sound.

    Thanks to you, Bob, for this blog. Thank you, thank you, thank you.

    • http://www.sickopportunity.com Bob Connors

      Hi there,
      Thanks for the kind words!  I’m thrilled that the diet is working for you.  Keep it up as it does get easier and will eventually become second nature.

      After 6 years on this diet I’m not even tempted by any of my old starchy favorites.  As you said, I can’t live with it.  I feel lucky enough that the diet works for me and that I’ve been able to halt this crazy disease in its tracks, so no time to think about all the foods I can’t have with a fact like that staring me in the face.

      Good luck!
      Bob