General Questions

Do you have a general question about diet and AS, or any other aspect of AS discussed on this blog?  Please enter your question in the comments section below and I’ll be happy to answer on this page  so that others may benefit from our discussion.

Thanks!

Bob

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

    Here’s a question from Tony posted over on the “Why This Blog” page:

    Anthony Basile Collapse
    Hi there…

    Thank you for your time and energy in getting the word out there.

    I am 32 years of age and have been battling AS for nearly a decade. This
    last year took a turn for the worst with what was thought to be a
    sacroilliac disfunction turning into full fledged debilitating hip,
    sacrum, spinal, shoulder and knee pain.

    Ironically, I am a manager at a natural foods cooperative and have been
    on the learning path of healthy mindful eating for years but nothing
    seemed to make a difference. It was this recent slip into a new level of
    dis-ease that through me down the path of the no starch diet. It has
    been roughly 4 months and there has been some good improvements.
    However, there is still a long way to go. I was hoping to ask your
    opinion and experience on a few subjects that still remain unclear to me
    regarding the diet and disease.

    Sweet potatos! They have made the transition possible, satisfying the
    need to fill full. Yet I sense that perhaps they are still a bit too
    high on the starch. What is your experience?

    Coffee! I drink very very small amounts occasionally to get me going on
    my very early work days (4oz) Ive read such varying things regarding
    coffee and inflammation. Any thoughts?

    Fatty meats! Chicken thighs, roasts, etc. These are my staples, all
    organic or free range. They have become my love and obsession! Yet I
    hear two sides regarding excessive fat.

    Fruit! What would life be like without it, yet I know the naturally
    occuring sugar content can create the perfect environment for bacteria
    to feast. Whaddaya think?

    Eggs! I have backyard chickens and consume a ton of eggs. Some suggest the egg white has triggering properties??

    Nuts. Sprouted? Moderation?

    I really appreciate any feed back on any of this. Obviously it is a
    journey of self and we are each so unique. But I do give great value in
    learning form others experience and trials as well.

    Thank you for your experience and trials. Perhaps it all exists for very
    specific reasons. Its so refreshing to know of others out there taking
    there lives and well being into their own hands! There exists no other
    direction but forward.

    Be well Bob.

    Tony.

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

      And here’s my reply to Tony:

      Hey Tony,

      Thanks for the questions and for your story.  Glad to hear that you’re having some success on the diet. 

      *Sweet potatoes: avoid at all costs.  They’re all starch and won’t help you at
      all.  Eat more fat if you’re not feeling full. Avocados, nuts, fatty meats, etc.

      *Coffee:
      drink up!  I drink a ton of coffee and see no side effects.  Everyone
      is different of course, but there is simply no starch in coffee. 

      *Fatty meats: in a word, YES!  Eat the hell out of fatty meats. 
      Whomever told you that they’re dangerous is misinformed and likely
      brainwashed by years of listening to the standard establishment BS. 
      Read, “Why We Get Fat and What To Do About It” by Gary Taubes.  Fatty
      meats are what our ancestors have been eating for millions of years. 
      And eating fat doesn’t make you fat, eating sugar (carbs, glucose,
      fructose, etc.) makes you fat

      .*Fruit: over rated in my opinion. 
      I eat lots of berries but avoid almost everything else.  As long as
      it’s not packed with starch (unripened apples, etc.) you should be fine
      eating most fruits if that’s what you want to do.  But you should test
      your fruit with iodine first to see starch content.

      *Eggs: I eat a ton of them and have no issues.  Everyone is
      different, however, and if you have a reaction then don’t eat them.  But
      you need to keep a food journal and keep track of how you feel after
      meals.  That’s simply the only way to do it while you’re learning about
      your body over the 1st year or so of this diet.  No easy way around it.

      *Nuts: I stick to macadamia, walnuts, and almonds.  No peanuts (not a
      nut), no cashews either.  Pecans occasionally.  Sprouted or unsprouted
      is up to you and your reactions moving forward.

      Agree completely with what you said about each one of us being unique.  Stick
      to the general rule of staying away from starch in it’s most obvious
      forms (sorry, but potatoes are an obvious form…as well as processed
      crap, dressings, ice creams w/added starch, etc.  Read all labels!)  and
      keep track of your own personal reaction to questionable items moving
      forward (eggs, night shades, etc).  You’ll end up with a diet that is
      uniquely suited to you and only you.  Which is the entire point!

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

    Here’s a question and comment from Claire:

    “Thanks for this awesome website, you have done a fabulous job in obtaining all this information.

    I am definately going to give your diet a go…anything to relieve the
    inflamation and pain.I am 33 and was diagnoised with AS in 2009 after
    suffering backache since 1999! I am terrified of all the side effects
    that are caused by the meds and have told my rhymatologist that I dont
    want to be on any meds. I sometimes take Prednisone for the pain when it
    is really bad, but that is it.

    What are nightshades? (sometimes I find all these terms a little bit confussing.)

    Do you know, does this diet help with losing weight? I have tried many diets/eating plans and still the weight sits.

    Also, what would your typical lunch consist of? I am working full day,
    so I need something that I can eat thats already prepared.

    Thanks for all your efforts,

    This is really helpful and I almost feel excited about trying this out.

    Looking forward to your reply,

    Kind Regards,

    Claire.”

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

      Hi Claire,

      Thanks so much for the question and comment…and thanks as well for agreeing to continue the conversation over here on the blog instead of email so that others can read and benefit from your question and our discussion.

      Nightshades: these are a common family of plants which include the fruits and vegetables tomatoes, eggplant, potatoes, and some hot peppers.  Some people with arthritic conditions like AS cannot tolerate nightshades.  The only way to find out if you’re one of these people is to start out on a strict no-starch diet excluding nightshades, and then add them back in one at a time once you’ve stabilized on the NSD and are having some positive results.  If you react, cut them from your diet.

      Weight loss on the NSD:  This one is difficult.  I would tend to say yes, you should expect some weight loss on a strict NSD.  I experienced weight loss and I know of others who have as well.  In fact, I was reading a thread on http://www.kickas.org the other day where one particular guy was having trouble keeping weight on…have also heard from another reader/commenter on this blog who was worried about keeping weight on while on the NSD.  Carbohydrates are what cause people to get fat.  Carbs are basically sugar.  Insulin is the hormone in our bodies responsible for keeping blood glucose levels in a strict range, so all that excess sugar floating around in your bloodstream after a carb-heavy meal is actually a class-1 emergency to your body because deviation from the safe range of blood glucose levels can have devastating and deadly results.  So insulin is immediately released to get that sugar out of your bloodstream.  The sugar ends up being stored as fat. 

      By eliminating starches from your diet you are eliminating a huge source of dietary carbohydrates, and thus sugar, from your diet.  The NSD is not by definition a low-carb diet, but it has been my experience that most people end up increasing the other two macro nutrients, fat and proteins, as they decrease carbs by cutting out starches.  Most folks on the NSD also end up eliminating or cutting back entirely all processed foods and replacing them with healthy carbs like fruits and vegetables.  These two factors may cause some weight loss among other positive side-effects of this diet.

      Typical lunch for me: A huge mixed green or spinach salad, raw mixed veggies like carrots, tomatoes, etc. , with some sort of meat like grilled salmon, steak, or chicken thrown on top.  Eat till your full and drench it in some homemade salad dressing (olive oil and balsamic vinegar, etc.).  Or, sometimes I’ll do a big mound of scrambled eggs w/mixed salad and avocado. 

      Hope this helps,

      Bob

  • Anthony Basile

    Hey Bob…

    Since adopting the paleo/nsd over four months ago, Ive seen marked improvement in certain aspects of the dis-ease. However, there is still a long way to go to be relatively pain free and independent of anti-inflammatory drugs. To this end, I also understand the diet must be finely tuned to each individual suffering with AS or similar auto immune problem and that takes time and diligence. But perhaps you could shed light on a specific question from your extensive time and experience with the diet…

    It makes perfect sense to not feed the very bacterial culprit responsible for the disease. However, it also seems to me we should focus on the firing mechanism itself (the immune response) and not just the target. With this, I wonder if many of the foods considered okay on the paleo/nsd are problematic and triggering to the immune system of some, even if not feeding the bacterium.

    Within this community, many swear that caffiene in any form is detrimental as it has inflammatory qualities. Same with nightshades, egg whites and nuts…all without starch but inflammatory none the less.

    Do you think these food items deserve more attention despite their lack of starch?
    Also, thank you for specifying to your readers the importance of no starch, as it seem many, including myself get hung up on the “paleo” name and idea which is highly interpretive across the internet.
    Lastly, Im obsessed with creating wonderful meals that fit the paleo/nsd and Im sure all of us would love to see a recipe page for inspiring mealtime ideas. If you need help with this at some point let me know.

    Thanks.

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

      Hi Tony,

      The most direct answer to your question about nightshades, nuts, and egg whites is that there is no one-size fits all rule in regards to any food.  The only way to figure out if those particular foods are trigger foods for your AS is by hard trial and error.  The best way to get reliable results is to start with a diet that is completely NSD and add back foods one by one only after you have gotten some initial good results on the strict NSD.

      That last part is important: only after you’ve gotten some good results on the strict NSD.  If you never reach the point on a strict NSD where you’re experiencing some positive results, then you need to take things to the next level by eliminating questionable foods like nightshades, eggs, and nuts (to use your examples).  And then stick with that diet for a period of time until you get some positive results/relief.  Then add back some questionable items and see if you react.

      There is really no simple answer to the AS mystery.  The NSD has worked wonders for me and for many other folks suffering with AS, but it’s no panacea and must be tweaked and modified by everyone who attempts to follow it.  The only way to figure out your perfect diet is through trial and error.  Keep good records, keep a food and pain journal and write down how you react to the foods you’re eating.  Hopefully, a pattern will emerge.
       
      In regards to your point about focusing on the immune response instead of the bacterium:  I think that’s precisely what the NSD does.  My understanding of the Kleb theory of pathology and thus the NSD is that Klebs eat sugar, multiply, and then our immune system kicks in to defend us by producing Kleb-killing antibodies. These anti-Kleb antibodies damage our own body tissues due to cellular surface similarities our body tissues share with the Klebs (molecular mimicry, HLAB27 marker comes into play here).  So if you deny the Klebs their food (sugar), then they never multiply, and so your immune system does not perceive a threat and so does not launch the damaging immune response.

      I don’t really think caffeine is damaging.  It’s a stimulant, and drinking coffee actually helps me when I’m doing my daily fasts.  But if you experience a measurably bad reaction to it then by all means your should not consume it. 

      Recipes: take a look at a few of the links I’ve put here: http://www.sickopportunity.com/?page_id=41, foodee and everydaypaleo are awesome resources.

      Good luck!
      Bob

  • Pingback: FOS, GOS, and Inulin, Oh My! | Sick Opportunity

  • molly k brown

    Hi Bob,

    So just starting off on the NSD, do I need to avoid cooked kale/cabbage? I had no idea that cooking them brings out the starch in them. 

    And would yo say it is still okay for me to cook with garlic (which I love)?

    Thanks,

    Molly

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

      Hi Molly,

      Thanks for the question.  Glad you’re starting on the NSD and hope you get some good results. 

      I’ve never had a problem with kale or cabbage, but everyone is different and you may have a reaction to them.  Looks like there’s only minute traces of starch in them according to the kickas starch content of food list here: http://www.kickas.org/ubbthreads/ubbthreads.php?ubb=showthreaded&Number=143543#Post143543

      Garlic is a tricky one.  It’s actually a bit starchy and it also has inulin in it as well, so many people on the NSD avoid it like the plague.  I tended to avoid it in my early days on the NSD but have gotten to a point over the years that I’ve added it back to my diet without any problems. 

      Good luck, and come back any time to ask questions.

      Thanks,
      Bob

  • molly k brown

    HI Bob,

    Several questions:

    1. How often do you water fast and for how long each time. Is 24 hours adequate? (I know you are going to say it is individual :)

    2. What do you think of melons (ie watermelon)? They don’t have starch. If the sugar is the issue what have you noticed from it as far as its effect on you?

    Thanks for your time.

    Molly

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

      Hi Molly,

      1)  You’re right;-)  It IS individual.  Fasting is part of my daily routine. I eat from noon to 8pm daily.  So that’s a daily 16 hour fast, as I skip breakfast.  This doesn’t work for everyone, but I never feel like eating breakfast anyway and I feel awesome working out on an empty stomach and doing whatever errands or work in need to do on an empty stomach.  I generally am not hungry till noon or so everyday, but if I am, then I’ll eat early.  I also try to fast about 2-4 times a month from dinner to dinner…so a 24 hour fast once a week is plenty.  Eat dinner on a Thursday, then don’t eat again til dinner on Friday…boom, you just did an easy 24 hour fast.  Don’t overdo it on fasting, just take it slow and make it part of your routine.  Slow and steady, not overkill.

      2)  Melons are great, non-starchy fruits.  I don’t react well to sugar in processed foods like ice cream and chocolate, but sugar from melons doesn’t really bother me…again, it’s all individual.  Just make sure you’re getting enough fat and protein in your diet and you’re not overdoing it on sugar/carbs. 

      Good luck!
      Bob

  • molly k brown

    Bob I forgot my last question.

    If you have one, could you post a list of starchy ingredients (ie I know maltodextrin is one) to look for in vitamins, etc.

    Thanks,

    Molly

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

      Hi Molly,

      Sorry, but I don’t have such a list.  I tend to read the ingredients and shy away from anything too sugary or which has obvious types of starch.  I currently take “Now Liquid Multi Gels” from Vitamin Cottage.  I have not had any reaction to them even though they contain trace amounts of carob, which is harvested from a legume. 

      Maltodextrin is bad stuff.  I usually carry my phone w/me while shopping and just keep wikipedia or google open so I can quickly check the chemical nature of mystery ingredients like maltodextrin.

      Maybe I’ll start a page under “Resources” which list ingredients like Maltodextrin which we should stay away from…

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

    Here’s an exchange with a wonderful person named Linda Green.  Please feel free to chime in if you have any advice of questions.

    Hello Bob,

    I wrote it as a comment in the general questions section. I think I’ll

    just try emailing it to you this time. I am writing to you on behalf

    of my husband, Joshua. We discovered he had AS after a year of

    research when he was 29. He is now 35 and he enjoyed almost a full

    remission for some of those years. He is a fit active father of four

    from age seven down to three months. He is also an avid cyclist,

    mountains and road. Earlier this summer he started a very rigorous

    work out program coupled with an all protein and veggie diet. He ended

    up in the hospital with Rhabdomyolsis. Here is a helpful link

    http://www.livestrong.com/article/320200-rhabdomyolysis-exercise/. His

    protein levels were through the roof. Since this time his AS symptoms

    have been very bad and last week he had the worst flare up I think

    I’ve ever seen. He could barely walk and seeing him in that much pain

    was heart-breaking. His Dr. said it was probably time to start Enbrel

    but that really scares me. He has been on the AS no starch diet for

    three weeks and I think we may be seeing a bit of improvement :) My

    concern is that cycling is his passion and I think it is a good form

    of exercise for him to do but will this diet give him sufficient

    energy and nutrition to continue.  In the past while racing or doing

    multiple mountains he would need extra carbs or power bars. Also what

    are your thoughts regarding beer and sugar? He likes both but is

    disciplined enough to do whatever it takes to be well. I so appreciate

    the helpful information I’ve found on your site and I’m so hopeful for

    my husbands healing. I’m sure you know how tied the physical

    well-being is to the emotional.

    Thank you,

    Linda

    http://www.beinggreen5.blogspot.com

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

      Here’s my first reply to Linda:

      Hi Linda,

      Sorry about your previous message not getting through
      to me and I’ll try to answer it here.  Though I would like to go back
      over to the General Questions section if you’re ok w/that just so that
      others can read our back and forth and maybe benefit from it.  If you
      submit a comment on the GQ section you should be able to see your
      comment appear on the screen right away.

      I’ve never heard of Rhabdomyosis but after reading a little about it
      on that link it sounds absolutely awful.  Joshua is fortunate to have
      recovered.

      Regarding your questions:

      Will the NSD give him
      sufficient nutrition?  Yes, absolutely.  This is a very healthy diet. 
      And it’s not just some pet diet of mine, but is really related to Primal
      and Paleo.  You and Joshua should read up on The Paleo Diet as well as
      Primal.  Read Dr. Loren Cordain’s “Paleo Diet” as well as “Paleo Diet
      for Athletes”.  Also, go right over to http://www.marksdailyapple.com
      for some immediate reading, but also so you can order Mark Sisson’s
      “Primal Blueprint”.  Take one look at Mark Sisson and tell me if cutting
      out crap foods like bread, pasta, chips, etc. will give you enough
      nutrition.  He’s a machine.  But the subtext of your question is more
      difficult- I think you’re asking about the massive amount of carbs/sugar
      that competitive cyclists need during races.  I don’t know the answer
      to that question, but think that Mark or someone on his blog could
      help.  To put it bluntly: that should not be Joshua’s main concern right
      now.  He needs to get healthy, get his AS pain under control, fully
      recover from Rhabdomyosis, and then maybe try to dial in and tweak his
      diet to allow competitive cycling. 

      Beer and sugar: I drink beer on a weekly basis and have no issues
      with it.  But some people w/AS can’t do beer.  He’ll just have to
      experiment and find out.  Cut it from his diet, stick to a strict NSD
      and then after he gets some good results try reintroducing it and see if
      he reacts.  Sugar is a different story: what kind of sugar?  Eating a
      piece of melon?  Eating a candy bar?  Eating ice cream?  Totally
      depends.  Too much sugar can be problematic depending on what kind/how
      much you’re talking about.

      All protein diet: did he really limit himself to only protein and
      veggies and EXCLUDE all fat?  That sounds really extreme and very
      unhealthy.  You need to eat lots of fats on this diet.  Coconut oil,
      avocado, AND animal fats.  Read up on marksdailyapple.com as well as The Primal Blueprint for more info on this, but fat is not bad.

      Question: what is Joshua’s current diet?

      Also, do you mind if
      I cut/paste this and put it on General Comments and we can continue
      over there?  Someone might read it and offer some helpful advice, you
      never know.  I’m cool w/keeping it on email if you’d prefer.

      Thanks!
      Bob

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

        Linda’s reply to the above:

        Bob,

        You can absolutely cut and paste, that was were I meant to write the

        question anyway. Thank you for the prompt response. Josh has been

        reading both your site and the one you shared and has found both

        incredibly helpful. I couldn’t agree with you more, the first priority

        is getting him healthy and in less pain. That comes before whether can

        do races and such.

        When Josh got Rhabdo he increased his workout level substantially and

        was eating only very lean meats and vegetables, salmon, tuna, chicken

        etc. Thus his body literally started deteriorating his muscles.  He

        started all this a week after I had our son or I may have been more

        aware of the extremeness of it and stopped him before it got so bad.

        His diet currently is the one we discovered at

        http://www.kickas.org/ubbthreads/ubbthreads.php?ubb=cfrm site. He eats

        lots of meats, beef, bacon, turkey, chicken, fish. He usually has

        eggs, bacon, cheese for breakfast. He eats lots of salads, spinach,

        avocado,veggies and some fruits. We’ve tested anything he’s not sure

        of with iodine for the past week. He does enjoy a few beers on the

        weekend or a glass of wine in the evening and he loves ice cream and

        sweet tea.  He has been doing this for about 3 weeks. So in your

        opinion at this point we need to cut the sugar and beer until we can

        tell if the diet is working, correct? Also, in a moment of desperation

        after a severe flare up, he read about a way to get pain relief

        through detoxing and eating nothing but apples for three days. Have

        you ever heard of this?  He ate nothing but organic apples for two

        days until he was so exhausted I finally convinced him to stop.

        Thank you for those book recommendations. I look forward to reading

        them. Again, I so appreciate your help and am praying we can avoid

        long term drug use and long term pain.

        Linda Green

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

          My last reply to Linda:

          Hi Linda,

          Yes, the 3-day apple fast is from Edgar Cayce and is
          quite popular.  The only problem with it is that you MUST test each and
          every single apple you eat with iodine before eating it.  Apples are
          commonly picked green and shipped thousands of miles, ripening along the
          way.  When picked green, they’re starchy.  So you must test, test, test
          w/iodine every single time.  This is the reason I don’t do the apple
          fast, but it’s good if you can avoid starchy apples.

          Tell Josh that slow and steady is the key.  It won’t be one fast,
          one week, one magic item he removes from his diet that does the trick. 
          It’ll be a slow and steady consistent approach to this diet…much like
          training for a big race, that carries him to victory.  He needs to
          become and absolute expert on how his body reacts to everything he puts
          into it, and so he should keep a food journal and pain journal and write
          down how he feels at least 2 times every day for the first few months. 
          Eventually, he’ll become an expert on his own body and will be able to
          ditch the food/pain journal. But it’s very important in the beginning so
          that you can document incremental improvement, and also learn which
          foods trigger minor reactions. 

          His diet sounds much like mine, so that’s great.  Ditch the sugar,
          beer/wine ONLY if he is not getting the results he wants.  No reason to
          go crazy if the pain is subsiding.  We still gotta live, you know?

          Know that he can beat this thing. But it’s a long battle and you can
          never let up.  I still get lazy once in a while and screw up, but for
          the most part I have beat this disease and have no pain.  I’m healthy
          and happy and am in control.  You guys will get there too.

          Come back any time and ask questions as I’m more than happy to help.

          Thanks,
          Bob

          • http://www.facebook.com/people/Linda-Riley-Green/1114770147 Linda Riley Green

            Thank you again for the helpful info. We are reading up on Paleo and primal diets and feeling encouraged. It is amazing how backwards America’s food pyramid is! He is seeing slow and steady improvement right now.

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

            Linda,

            That’s fantastic news!  I want him to come back here when he’s feeling like he has conquered his AS and write me a “Success Story”!

            The Food Pyramid is an absolute joke.  Denise Minger has about the smartest response to it that I’ve read.  See that here: http://rawfoodsos.com/2011/02/04/the-new-usda-dietary-guideline/  She’s brilliant on a number of other diet related topics as well.

            Good luck!
            Bob

  • Anthony Basile

    Hey Bob…
    So many of us trying to heal from AS take a daily NSAID to get through. And as we all know, NSAID’s are incredibly damaging to the gut lining, thus creating more permeability. It seems like such a double edged knife as the very source of many peoples suffering stems from a compromised gut, thus creating an hyper reactive immune response and pain, and to relieve this pain, and for many, to simply survive, we ingest a known culprit to the very problem.

    I get hung up here because I am absolutley dedicated to this diet and its healing, restorative capacity, yet I cant kick the meds yet. How did you do it? How do you transition away from the drugs and still get through the demands of everyday living so that true healing can take place?

    Thanks for any further insight.
    Tony

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

      Hey Tony,

      I still take NSAIDS very rarely when I flare or when I really, really overdo it on a workout. But I don’t take them on a daily basis or for more than a day or two for the exact reason you mention- namely, that they wreak havoc on our guts.

      If you’re going to heal the gut then you probably need to kick the NSDAID habit.  That said, life is demanding and I understand as clearly as anyone with this disease that you need to be relatively pain-free to get on with your life.  Do what you have to do to remain functional but keep the goal in your sights.

      I didn’t really have any trick other than really sticking to the diet, using fasting to get over flares, and trying to exercise as much as I could handle. 

      Heating pads and a nice heated massage chair seem to help as well, and when I’m feeling mild pain where I previously would have taken an Advil I’ll use some heat instead.  Wish I had some more tricks, but it’s mainly just time, clean diet, and listening to your body.

      Hope this helps,
      Bob

  • molly k brown

    Hi Bob,

    Do you recommend giving up fruit as I start the NSD? I am presently eating melons. Lots of watermelon, mostly. I eat some berries. But have pretty much given up the other fruit I used to eat, namely apples. I am being strict NSD, but it seems like so many people feel like the fructose in fruit bothers them. Maybe I should stop eating it? Your thoughts, please…..

    Thanks,

    Molly

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

      Hey Molly,

      I think giving up apples was a good idea.  They’re just too risky and it’s a pain in the ass to keep testing every single one with starch before eating them.

      I eat lots of berries every single day: blueberries, raspberries, blackberries.  But I don’t eat much melon.  I personally think the sugar is a bit much, but that’s just my preference due to reading a lot on Paleo and Primal dieting.

      I know that many people on this diet prefer to avoid fruit because of the sugar, but it’s not necessary for everyone.  I’d recommend starting out at least for a week on very light fruit- maybe just the berries.  Once you feel like you’ve gotten some good results and pain relief then add back in the melon and see if you have any reaction.  Leave it in your diet as long as you are having good results.  But if you start to backslide or hit a wall, then try cutting fructose back as much as possible.

      Good luck!
      Bob

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

    This from new reader Matt:

    Comments: Hi Bob — meant to post this as an open comment, but couldn’t get the comments form to work!!

    My name is Matt.  I live in Cambridge, Massachusetts.

    When I was a junior in college in the northeast, I was rowing on the
    crew team and had a fall cross country skiing.  These two data points
    constituted the red herrings that put the doctors off the scent for a
    few months, when I came in with acute back pain, until I got my
    ankylosing spondalitis diagnosis at a Harvard teaching hospital in
    Boston.  I have never had anything but first-rate care, for which I am
    extremely grateful.

    I took Naprosin for some time until Embrel came along.  Before it did,
    toward the end of my time on Naprosin, I walked with my head glued
    directly to my shoulders like the tall guy in the Adams Family, and
    found it at times a bit much to take.  It got me down.  Enbrel, though,
    changed that, and I wasn’t Lurch anymore.  I could get back into running
    and even swimming.

    I still had to sleep with a bevy of pillows, and would catch my posture
    fleetingly and obliquely in reflecting surfaces, and be disappointed.  I
    got Iritis.  I often felt stooped over and weighed down, and could not
    ride a bike due to the difficulty of looking around in traffic.  And of
    course, as others before me have pointed out, a burlesque fact worthy
    only of tragedy-comedy: I could not sneeze.

    I considered all this par for the course, and did not have high
    expectations.  I just was pleased that the pain was not excruciating
    24/7, and I guess that other than that my karma was one of passive
    acceptance of my fate.  I had become very Buddhist about suffering over
    the years, and more than a little resigned to life being less than one
    might have hoped.

    That was before zucchini changed my life.  I have to admit that zucchini
    had never been high on my list.  In fact, it was very low, and while I
    was growing up, there was always much too much zucchini growing in our
    garden, and the desserts my mom would make from zucchini never
    completely disguised the fact that it was a big, green squash — not
    dessert.

    But then, in the subtle way that important things happen, I came to love
    zucchini, in much the same way that better men before me have come to
    stop worrying and love the bomb.  OK, I’m joking about loving the bomb.
     But serious about zucchini, and other things like avocado, tuna,
    salmon, Greek yogurt and fresh berries, all of which were high on my
    list, even back in the day — when baguettes were atop the list, me
    having spent some of my youth in France, et voilà.  Zucchini meatloaf,
    zucchini fritters.

    I know there is no generally accepted proof in the medical community,
    and I am just one person.  My story will be necessarily and by
    definition anecdotal.   But I am extreme, so when I decided to undertake
    a change in diet, I did so 100%.  I’ve got that discipline, and a
    certain deep desire to exit the hospital predicament.  The notion of
    real change being possible really whetted my appetite.  So on August 2,
    2011 I went no starch.

    Granted, that is exactly four days ago.  And I have been able to sleep a
    little longer on the weekend, without being chased from bed by that
    wild fire in the rib cage.  It feels nice to linger a little, in that
    drowsy margin where pleasant thoughts mingle like dreams with the
    shadows and dappled sunshine outside the window.

    Generally I am bookish but rugged, and definitely not the sort of person
    that is always complicating dinner parties with the latest alimentary
    regime they have discovered.  But I can bring my total Greek yogurt and
    berries along, when the others are all embracing pizza.

    Spondalitis is a grindstone tethered to your neck.  If you thought
    someone was going to clobber you from behind, your upper back, shoulders
    and neck would stiffen, right?  But what about being like that all the
    time, even when not at imminent risk of being clobbered?  (Just because
    your paranoid doesn’t meant they’re not after you.)  And that’s with
    Enbrel.

    I’m really glad you started this blog because it’s too easy — at least
    for me — to be in denial about the disease.  Everyone’s got back pain,
    right?

    Enbrel is a passive response.  I used to want to close the shades when I
    shot it into my leg once a week, so the neighbors wouldn’t call the
    narcotics squad.  It feels like heroin.  When the pain in living is
    enough, out comes the needle.  There is a despair to it, when you relish
    the pain the needle makes breaking the skin as trivial by comparison.

    Enbrel was good enough until recently a local tick gave me Lyme Disease.
     Off Enbrel for two weeks to take the course of antibiotics, I had
    spondylitis pain like a medieval rack.  My attention riveted toward AS,
    and I did some internet research, became aware of new things, engaged by
    the possibility of achieving a condition that was better than “good
    enough.”

    So all this information about diet and the scientific theories behind it
    is new to me.  I am trying to apply it in useful ways beyond my plans
    some day to obtain a snow-white standard poodle and name it Klebsiella.

    It’s nice to be active in finding a solution.  The body is not at war
    with you, it’s just confused.  If it needs help eliminating a conflict
    – a bacteria that ails it — shouldn’t you help?  Wouldn’t you help any
    friend in that way?

    Stupidly enough, and perhaps like al those folks who impose on the
    dinner menu at the last moment with an alimentary curve ball, it makes
    me feel special to have a special diet.  Swimming, stretching an other
    exercise ask something from my body (for its own good).  But these foods
    are a special gift I can prepare, asking nothing in return.
     Cauliflower soufflé with cheese.

    A friend of mine got hepatitis A this summer from eating shellfish.
     According to Wiki, the symptoms are “malaise.”  Ditto for spondalitis,
    no?  It’s just one big mal du siècle.

    I have often described the disease like the feeling that someone was
    pushing your head from behind.  It is nice to think that is may not be
    the hand of God pushing it, but just some baker or pastaman — some
    acne-scoured pizza delivery boy you could have taught a lesson to long
    ago.

    I wish I had know about this long ago, as I would have started much
    earlier.  I learned about it last week, and embraced it.  I have been
    thinking why I might have made another choice, and not embraced it.  If I
    did that, I think the reasons would have been psychological.  I have to
    think about this, because I am sure there will be times in the future I
    think of relinquishing this diet.

    Probably the main reason not to try this starch-free lifestyle is a
    psychological one.  If it actually does work, that opens up a host of
    other questions.  Not least: why didn’t I do this long ago.  Regret gets
    you exactly nowhere, and some experiences feed regret more powerfully
    than others.

    Not to mention questions about the medical order in which one is, in every sense of the word, invested.

    It also implies a responsibility.  I am in fact part of the issue.  It’s
    not just happening to me, but also through my own agency.  I need to be
    accountable for the food with which I nourish myself, and assess its
    impact on this disease.  I am the one doing this to my body.

    But I see littler reason not to try it.  Like I said, I think from the
    recent silence in my bones, that my body is not adverse to this.

    Why wouldn’t I try it?  If it turns out that I miss the old familiar
    pain like some Kurt Cobain or Elliot Smith song, I can always go back to
    the “gourmet” pizza.

    Wouldn’t it be nice, in any case?  The fountain of youth isn’t drink after all, but food.  Or more precisely, not food.

    Extremism by temperament, tempered by experience, optimally results in a
    certain realism.  Despite my hyperbole about Ponce de León foraging in
    Florida for the youth fountain, I’m not looking for miracle grow here.

    Instead, I am seeking a big picture that includes exercise, physical
    therapy, therapeutic medicine and diet.  If diet can play a positive,
    albeit incremental, role in my spine’s wellbeing, then it is welcome at
    my table.

    Thank you again for inspiring by your example!

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

      And my reply to Matt:

      Hey Matt,

      Thanks
      so much for sharing your story.  I am really interested to hear how
      your no-starch experiment goes.  Will you keep in touch and let me know
      how you’re feeling over the next few weeks/months?

      Also, sorry about the comments form not working.  If you don’t mind,
      maybe I’ll cut/paste your comments below to the General Questions
      section and we can reply back and forth there.  You ok w/that?

      And let me know if you ever have any questions about the diet.  Glad to help.

      Thanks and good luck!
      Bob

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

        Matt’s reply to me:

        Bob

        You are really awesome to maintain such a great blog — excellent
        presentation, real easy to read and navigate, cool look, and most of
        all, hardy substance!  I had been reading KickAS — but it was your
        story, compellingly told and straightforward, with a sense of humor that
        revealed a genuine personality and actual person behind it, that
        convinced me to try the diet.  You give very helpful practical tips as
        well.

         

        The comments section may be a function of my laptop and the remote
        location I was accessing it from – often if I just switch computers,
        features work that do not work on my laptop.  In any case, definitely
        please put my comments in the comments section.  I am happy that you
        would like to do that!  It is nice to find other people who deal with
        this — and amazing to find people who have pioneered solutions that
        outpace the medical establishment.

         

        I will keep you posted.  I am very cautious about leaping to
        conclusions due to being overly hopeful, but I do think I can see some
        changes.  Any way, lots of berries, spare ribs, grilled chicken,
        eggplant parmesian, smoked salmon — there is plenty that makes this
        interesting and worthwhile as a simple culinary experiment, never mind
        as a potentially life-transforming impact to the cage of my body.

         

        Thank you again for the work that you do, and for writing.

        Matt

  • http://www.facebook.com/people/Linda-Riley-Green/1114770147 Linda Riley Green

    Hi Bob, 
    I wrote a while back with a question about my husband Josh who is struggling with AS. It’s been about a month and a half that he’s been going strong with the diet. I’m happy to see him eating so healthy and he is looking pretty fine too if I do say so myself :) Anyway I’m back with a new question. I think overall he has seen less joint pain but he is having this persistent problem with a large knot of inflammation in his calf. It is extremely painful and we’ve tried massage, hot and cold compression, and stretching. It will NOT go away and it’s been there for almost a month. Josh doesn’t want to go back to his Dr for it because he has already had to take Cortizone shots for joint pain this summer and his Dr wants to put him on Enbrel next. Have you ever experienced anything like this and do you have any idea how he could get some relief from this particular symptom? 
    Thanks,
    Linda

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

      Hey Linda,

      Great to hear from you again.  I’m very happy that your husband Josh is doing better overall and sticking to the diet.

      Funny that you should mention his calf issue as I’m hobbling around my house right now on crutches.  I tore my left calf muscle this past weekend running in the Warrior Dash race up in Copper Mountain.  Fun race, but the last obstacle (jumping over fire) got me.  I heard a loud “pop” and there I was hopping across the finish line.

      My injury started out as a large knot in my calf in the week leading up to the race and I also tried massage, stretching, as well as rolling it on a foam roller and barbell.  Nothing worked and now I’m screwed for 6 weeks.

      Wish I had some good advice for Josh.  I’m pretty certain that my calf injury is NOT AS related.  Probably more related to over training in preparation for another race.  If Josh is still training/exercising then it might be time to lay off for a while and do the RICE thing.  Sorry, wish I had some better advice.

      Good luck and let me know what happens.

  • Anonymous

    Hi Bob, apologies in advance if you’ve answered this question already 
    but I was wondering.. How and when do you phase out your meds/NSAIDs while doing this diet? Do you start tapering your dosage? etc etc. Thanks

    Chris

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

      Hey Chris,

      It’s a good question and a very important one.  The answer is that there is no rule as to when you phase out your meds/NSAIDS.  My own personal experience was that I slowly stopped taking NSDAIDS over the first few weeks on the NSD.  I’m at the point now where I do not take them any longer on a regular basis, though I will pop a few if I overdo it exercising or am having  mild flare.  But it could be months and months between doses.

      You should be the one who decides when to taper or cut back on your meds.  Listen to your body.  If you’re feeling pretty good and relatively pain-free, then go for it.  Cut back on the meds and see what happens.

      Hope that helps
      Bob

  • http://www.facebook.com/people/Lauren-Sawyer/31802098 Lauren Sawyer

    So, I have been iodine testing everything, and here are some things that turned starchy, and surprised me:Certain canned coconut milk (even if the ingredients are just coconut milk, water)Cucumbers – I want a cucumber so bad! But the seeds turned black. Are there seedless varieties and/or do I need to poke all the seeds out?Flax seeds….I bought a bag of flax seeds, and cut a seed in half. The inside of the seed turned black. How do other people say they are fine with flax seed, eg flax seed bread, flax seed “oatmeal”, etc, etc If the inside is starchy?Cherry tomato – When I cut one in half, the edge of the skin on the tomato was blackish. Wasn’t sure if it was just the color mixture of the iodine and the red of the skin, so maybe it was just a combination of the two colors, or are they really starchy?Spaghetti Squash – Really? I wanted to make spaghetti with spaghetti squash, but it turned straight black. Three different varieties of LOCAL apples tested positive. Man, that made me mad. Bought a whole bag from a local apple orchard, SURE that since they were local, they were picked ripe. NOPE, black. Be careful, those of you on the apple fast. Living proof that you really should test with iodine!I’m sure there have been others. I will post when I remember or if a new one pops up. Any advice on the things above??? Thanks!!

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

      Hi Lauren,

      Sounds like you’re doing the right thing.  Best advice I can give you is to just keep on testing everything until you have a lot of go-to “safe” ingredients on which to base your diet. 

      I don’t eat apples or spaghetti squash any more due to their starch content.  I never really ate that much flax so not hard to give up.  I don’t like eating all the alternative types of baked goods…stuff made w/almond flour, flax, etc.  It’s a slippery slope for me to be eating “safe” baked goods, as I just start to crave some of my old favorites.  And I also think that those types of ingredients (flax/almond) were never meant to be eaten in such large quantity as you do when eating baked goods made w/their flour.

      Best thing a person on this diet can do is to find a whole new way of eating, as opposed to trying to imitate your old favorites (spaghetti, bread) using new ingredients.  I honestly don’t miss those dishes any more, but only because I’ve made a clean break and have an otherwise satisfying and interesting diet.

      Good luck!
      Bob

  • http://www.facebook.com/people/Lauren-Sawyer/31802098 Lauren Sawyer

    Hey Bob,

    I’m over a month into the diet and the pain that I’ve always had in my right SI/hip is gone completely! However, the strangest thing has happened. I started getting sciatica-like pain and the familliar dullness over on my LEFT side, which I’ve never had before, in all my years of dealing with AS. Any idea how or why after going NSD, the pain has switched over the other side? It’s not a big flare or anything (yet) but enough to leave me wondering what the heck is going on.

    Have you heard of this happening before? I’m hoping it is just my immune system “retaliating” on my left side as one last final jab before AS leaves me. Your thoughts on this??

    Thanks!!

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

      Hi Lauren,

      First of all, I’m thrilled to hear that you’ve had success with the diet.  Please be sure to document this and to stick with the diet!  In general, you must remember that dietary treatment is a LONG TERM solution and not a short term cure.  The answer to your question may be right there, now that I think about it;-)

      I’ve had a lot bumps in the road during my 7 years on this diet.  I’ve had numerous “mystery” flares that I simply could not account for w/100% certainty.  Maybe this is the first of your own mystery flares.  I know that’s cold comfort, but I’m pretty much pain free at this point and I’ve suffered through many, many flares exactly like you’re experiencing without it taking away from the overall long term positive effects of this diet.  My gut is telling me that you should just document this and stick with the diet and move on.  Don’t over analyze this setback.

      I’m actually suffering through a little mini flare of my own right now which is located just under my scapula and into my ribs near my armpit.  THAT is a first!  I’ve never had pain in this spot before. In this case I know exactly what caused it: I ate some of my daughter’s yogurt late one night this weekend and it had starch in it.  Oh well, shit happens and I’ll be over it in less than a week.  But the location is odd and NOT typical of my symptoms pre-diet.  Sounds familiar, right?

      Maybe it has something to do with the way  your body was compensating while you were having flares on the right side.  Now that the pain is gone on that side, maybe you’re using the other side more or in a different way and it’s causing some non-AS related swelling.  Who  knows.  The body is truly a mystery.

      Fact of the matter is that you’ve had some initial success.  Stick with it!  Don’t give up.

      And please do come back and let me and everyone else here know how this turns out. 

      Good luck!

      • http://www.facebook.com/people/Lauren-Sawyer/31802098 Lauren Sawyer

        Hey Bob, I knew you would have encouraging words! I am actually banking on your last suggestion about it being a mechanical thing due to walking normally again, but maybe I’m in a little denial and it is my first mystery flare. I woke up today and it feels a little better, not worse, so I don’t see this going into a big flare or anything (fingers crossed).

        I’m going to not eat nuts and dairy for a few days to see if that will knock this out. Believe me, I am not discouraged at all. The fact that I got rid of the persistant inflammation and pain on my right side along, even if it did shift, is enough to give me faith the diet is key. In a really twisted way, I am thankful the pain is somewhere else, besides the same place from the past 3 1/2 years!

        Thanks, and I’l keep you and everyone here posted!

  • http://www.facebook.com/people/Linda-Riley-Green/1114770147 Linda Riley Green

    Hello Bob, 
    It’s been a little while since I wrote to you regarding my husband Joshua the cyclist. My last question for you was regarding calf pain and you were right it indeed a torn muscle and not related to his AS.  I am so grateful to report that over the past several months of adopting a paleo no-starch diet he has remained pain free!! He has not needed his meds and I can’t tell you how wonderful it is to see him be able to get right up out of bed every morning. Many thanks and continue to spread the word as we will. A brand new road bike is on the way and he is fired up!
    Grace and peace,
    Linda Green
    http://www.beinggreen5.blogspot.com

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

      Hey Linda,
      Fantastic news!  Glad that Joshua is back to his old self again.  Stick with the diet and I’m sure he’ll have continued success. 
      Continued health to you and your family!
      Bob

  • Jon Soralover

    Hey Bob,
    Thanks for creating this great site.  It’s a very useful resource for those, like me, who have been newly diagnosed with AS.  I’ve got a couple questions for you:

    First, do you track your erythrocyte sedimentation rate (ESR), a basic measure of how much inflammation is in the body?  It seems like it could be a good corroborating piece of evidence that the NSD is indeed reducing inflammation.  If you do get it measured periodically, how often do you do it?  Or do you get the sense that your ESR basically tracks your subjective sense of pain, and so is redundant when you can already tell your inflammation level by how much pain you’re experiencing?

    Second, I read somewhere on your site that you enjoy running.  I, too, through dietary restrictions and some meds, am frequently able to run without pain.  But a recent x-ray revealed some obvious sclerosis (hardening) of my left SI joint, and a bit in my right as well (but no changes yet in my spine).  I’ve read that the SI joints are important shock absorbers, reducing strain on your spine.  Do you have a sense of whether I should be concerned about whether my spine is taking too much of a beating while I run?  I’ll obviously also be asking my rheumy about this, but wanted to get your first-hand perspective as well.

    Thanks!

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

      Hi Jon,

      You’re welcome.  Glad that you’re finding the site useful.  I’m remiss on adding new blog posts, but life gets busy sometimes…

      ESR: I don’t track mine at all.  I just had a conversation with another AS patient about this very topic the other day and my sentiment can be summed up as this: I know the diet is working because I’m not in pain and have no flares.  No flares equals no major swelling/inflammation.  No inflammation means that I don’t really have to worry about further fusions.  So why would I go to a doctor and pay for a blood test to tell me what I already know?  Namely, that my symptoms are not present and that I feel better?  I’m basically in remission from AS as long as I stick to the diet.

      I honestly don’t care a lick what my ESR is.  The fact is that I feel great and can trace any flare directly to food intake.  So when I make an occasional bad choice food-wise and suffer for it, I can usually tell right away that it was due to “x” food item and just avoid that moving forward. 

      I do enjoy running on occasion.  I enjoy power yoga, skiing, and mountain biking more.  The key for me with running was changing my stride to a forefoot strike instead of heel striking.  That way, your tendons, ligaments, and muscles provide shock absorption as opposed to your skeleton.  I’d highly recommend reading “Born to Run”, by Christopher McDougal if you haven’t done so already. 

      I have SI fusion and don’t find it painful to run.  My right knee is the only area that gets a little iffy when I run, and that is not AS related.

      If you’re a heel-striker then you may want to reassess your stride in order to protect your AS-affected joints from the jarring associated with that type of stride. 

      Hope this helps,
      Bob

  • Kristine Go

    Hi Bob! I’m a female asian with AS. I have some questions regarding NSD:
    1. What do you use to season your dishes? Soy sauce is a staple in asian cooking but I can’t use it now because it has wheat in it. I also read that all spices are starchy. Vinegar causes adverse reactions in a lot of people. That’s pretty much rules out everything except salt.
    2. Is table sugar safe? What about Splenda?
    3. How has your weight changed since starting the NSD?

    Would love to hear from you soon!

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

      Hi Kristine,
      1) I use all kinds of spices as not all spices are starchy, and also each person has different tolerance levels for very small amounts of spices contained even in starchy spices like curry.  So, for example, even though curry is technically starchy, I can tolerate it in small amounts as long as my diet has been starch-free for several months.  Vinegar is a staple in my diet- balsamic for salads, etc., and I’ve never had a reaction.
      2) Table sugar should be safe.  Splenda should be safe.
      3) I’ve lost a bit of weight, but I wasn’t really overweight to begin with.  If you’re overweight then you may lose a considerable amount of excess weight once you start the diet.

      You’ll need to experiment on yourself to find out if my answers apply to you.  They may, and they may not.  Some people are sensitive to even the smallest amount of starch and so they can’t tolerate curry powder, for example.  Some can get away with very small amounts if the rest of their diet is clean.  I even have a few friends on this diet who found out that after many years of doing it they can add back very starchy items like rice and sweet potatoes (the theory being that the Klebs have pretty much died out after years on the NSD and so no flares)

      The best way to find out for yourself is to make your diet as strict NSD as possible and then add back items one at a time over a few days to see if you react.  But only add back suspect items once you’ve started to have some good results.  And then take 2-3 days for each new food item without adding a second to see if you react (for example: add bananas back in and eat them every day for 2-3 days and see if you react before adding another suspect item back into your diet)

      Hope that helps!
      Bob

      • Kristine Go

        Thanks for the helpful tips Bob!:-)

  • Jon Soralover

    Hi Bob,

    Thanks for your prior helpful reply.  You’ve stated that fasting is an integral part of your diet (for parts of each day and for a 24-hour period each week).  This is something I haven’t experimented with much.  But today I skipped breakfast and lunch, just to see what would happen, and at 6pm I feel great, with obviously reduced pain levels both from last night and when I woke up thing morning.  This has made me more interested in incorporating fasting in my diet (which is already no starch).  I’m curious in regards to your situation: doesn’t the fact that fasting is necessary (even though you’re on a NSD) suggest that it isn’t only starch that causes you pain?  Perhaps it means that you’re still consuming something else that also causes pain?  Or do you think that, even if you ate only the absolute safest possible foods for you, you would still have some AS activity that would need addressed with fasting?

    I’ve been on a strict NSD for a few weeks now, and while my pain is certainly lower, it hasn’t disappeared.  I’m still in the process of working out if something (non-starch) in my diet is also causing me pain, but after my positive experience today, periodic fasting is something I definitely want to experiment with more.Thanks!

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

      Hi Jon,

      Fasting is just part of my approach to overall health, not something specific to AS treatment or the NSD.  Intermittent fasting is quite common in many health circles for a variety of reasons.  (check out marksdailyapple.com for more info on IF)

      IF may have additional benefits to someone with AS, but I’m not sure.  I do know that it helps me get over minor flares pretty quickly.  But I do it mainly because it feels right and I have good results.  But my NSD would (and has) still worked when I don’t fast.

      If it works for you then why not give it a try?

      Good luck!

  • http://twitter.com/wupeizhen Kristine Go

    Hi Bob,

    It’s me, Kristine. I have a few follow-up questions on NSD.
    1. What kind of iodine solution do you use? Right now I use Betadine, which is a dark brown color and I wonder if it is reliable. It does turn black in high-starch foods (rice, bread, pasta, etc), which I don’t need to test anyway. I tested peanuts once and it took HOURS for a slight color change to occur.
    2. Why are bananas labeled a starchy fruit? True, they do contain a lot of starch, but that’s when they are green, and nobody eats them green. I’ve googled this one repeatedly and every single result said that bananas have very little starch when fully ripe and are virtually starch-free when overripe. Here’s one of them:

    http://my.dietpower.com/features/food_myths.php

    What is your experience with bananas?
    3. In the case of fruits picked green that test positive with iodine, will allowing them to ripen some more solve the problem? I’ve thought about this over and over and it just doesn’t make sense that a fully ripe (and sweet) fruit should be starchy because the starches will have converted into sugars… So is it just a matter of ripeness?
    4. Have you tried antibiotics?

    Looking forward to your reply. Thanks.

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

      Hey Kristine,
      I think I use a 2% Lugol’s Iodine solution.  But if yous turns black in the presence of obvious starches then I think that’s fine.

      Bananas are questionable.  Some people have issues w/them, some don’t.  Personally, I cut them from my diet for years and only recently added them back in without suffering any flares.  Best thing to do for any questionable food is to cut it from your diet for a while until you’re feeling like you’re getting good results from the NSD.  Then add them back in and see what happens.  If you flare, cut them for good.  If you don’t react then good for you;-) 

      Never tried antibiotics.  The diet worked quickly for me so I didn’t have to.

      Good luck!

  • Brian Zajac

    Hello Bob,Today I just found out about the NSD, this blog & kickas.org.  The blog has been a great read so far.  However, I couldn’t find any information on people who take biologics like Enbrel.  I currently take 25mg 2X / week.  Since biologics are different than NSAIDS (a post I saw you answer a few months ago), do you have any advice on the best way to start removing it if the NSD is working for me?  I tried getting off of Enbrel twice in the past 2 years & at the beginning of the 4th week, I turned into a 93 year old man.  Couldn’t even tie my shoes kind of problem.  So any advice / links / references would really help me out here.  Thanks in advance.

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

      Hi Brian,
      Thanks for the question and I’m glad you’re finding this site useful.

      I’d say that the safest thing to do is to simply ask your doctor if it’s safe for you to slowly back off of the Enbrel, and if so, how should you do it.

      I’ve never taken biologics so I don’t have any personal experience in that area.

      You might consider posting that question on kickas.org.  Just go to that site and post it in the forum called “NSD and diet related”.  I think it’s the 10th forum down from the top.  I’m sure there are some people over there who have tapered off of biologics.

      Actually, here’s the link to the NSD and diet related forum on kickas.org: http://www.kickas.org/ubbthreads/ubbthreads.php?ubb=postlist&Board=7&page=1

      If you do end up going off of Enbrel can you please come back here and do a follow up post so that others can learn from you?

      Thanks!
      Bob

      • Brian Zajac

        I plan on going off Enbrel as soon as humanly possible!  I’ll post on KickAS & see what they say.  

  • Dbchernicoff

    Bob- Thanks again for all of your help. I was just recently diagnosed with inflammatory spondyloarthropathy and found out I was hla-b27 positive. So not quite AS…yet.I’ve had pain in my right SI joint for 5 months now and on and off again rib pain in my back left side. The rib pain has subsided but the inflammation has spread to my hip and buttocks area on my right side. These are the flares that render me useless. As of now, I have been on the diet pretty strictly for about 3 weeks now. No starches but have messed up a few times by going out to eat. I will say that beer and whiskey does not seem to have any effect in fact- I often feel better the next morning after drinking. While I am not completely pain free I have noticed a reduced amount of inflammation in the SI joints and around the hips and butt.I’m not taking any NSAID’s at the moment and was able to go snowboarding 1 day on a recent trip which I really thought I would not be able to do.  I’ve found the diet to be confusing and difficult, but with Bob’s help I have definitely made it easier on myself. Even still I have questions as they keep coming up all the time.1. What if any supplements have helped you?     fish oil (brand?), zinc, evening primrose?2. Have you found protein shakes to bother you? Perhaps the sugar involved? or using whey compared to soy.3. I remain carb conscious. Mainly because I feel better when I have enough in me and I don’t necessarily need to keep burning fat. What are some really good starch free foods that have lot’s of carbs?4. Dairy does not seem to affect me. I’ve had some really good days while eating cottage cheese,yogurt, milk and cheeses but is it something I should try to cut out anyway.5. Have you talked or met anyone that the diet really hasn’t helped much?I’ve been diligent about my food journal and recording pain but at times I’ll have a flare and it seems like I’m back at square one..even when I do everything right. Tonight I’m going to work in a sweet potato and see how I react. RIght now the ski trip was my own personal victory for being in so much pain the last few months. I can only imagine you poor bastards that have been dealing with this for years of your life. Good luck all!

    • Lauren

      I’m sure Bob will address all your issues, but I just want to pipe in before you eat dinner and yell a big fat NO on the sweet potato! They are loaded with starches, as much as regular potatoes, so if you are trying to go no starch, don’t eat it!! Keep up the good work, it looks like it is working for you!

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

      Hi David,

      Thanks for coming back and giving us an update on your diagnosis.

      Can you elaborate on your diagnosis of inflammatory spondyloarthropathy (IS for short )?  My understanding is that AS is a type of IS.  That leads me to believe that:
      1. Since you’ve got the classic AS pain symptoms (see 4th paragraph here on kickas.org: http://www.kickas.org/guide.shtml)
      2. You’re HLAB27+

      Then the only thing preventing an official AS diagnosis is visual (xray/MRI) evidence of actual damage in the form of fusions, classically the sacrum for starters.  Is that about right or did I miss something? 

      If the above is accurate then you’re a lucky boy indeed.  You’ve noted already that the diet seems to decrease inflammation around the hips/butt.  That means the diet is working for you and so I’d proceed full steam ahead with the NSD if I were in your shoes.

      Yes, the diet isn’t a magic solution that will make ALL of your pain go away (though it’s possible), and it’s also important to remember that it won’t work overnight.  But you’ve only been on it a short time and have noticed a measurable improvement.  I’d wager that the longer you stay on this diet the more improvement you’ll see.  That’s how it was for me and for many others who’ve been on the diet for years.

      Answers to your questions:
      1.  What supplements to take: fish oil is great.  I use Carlson’s but I’m sure any brand of liquid fish oil would do.  I take magnesium in the form of natural calm (http://www.amazon.com/Natural-Vitality-Calm-powder/dp/B000WVYB8Y/ref=pd_sim_hpc_3) original flavor only, not the raspberry or others as I think they may have starch.  Vitamin C (4k or more a day), multivitamin, vitamin D (megadose 5k or so).  That’s about it for me, but zinc is probably good too.  I’d really concentrate on getting a ton of fish oil as those healthy omega 3′s help to bring inflammation down.
      2. Protein shakes: they don’t bother me.  I use Primal Fuel powder once in a while.  It’s expensive but good. (http://primalblueprint.com/products/Primal-Fuel.html). 
      3. Carb sources: fruits, veggies, and nuts are my main carb sources.  There are tons of good fruits-everything from melons to grapes to berries. 
      4.  Dairy: that’s for you to decide.  It’s not a starch, so it’s ok on the NSD.  But you’ll have to keep a journal to see if you have any pain while on it.  I tend to stay away from it because I feel better when I don’t have it in my system.  But it doesn’t make me flare.  And if you’re certain it doesn’t make you flare then go for it.  Beware of shredded cheeses, however.  Just about every type of shredded cheese will have starch in it as an anticaking ingredient.
      5. Yes, I’ve seen people on kickas.org who say the diet did not work for them.  AS is a mysterious and complicated condition.  I don’t know why the diet works for some and not others.  A couple of theories: maybe there are multiple “forms” of AS, some less severe than others; maybe some people come to the diet too late, after too many years of living with AS and too much damage done already; maybe some people aren’t able to stick to a strict version of the NSD and so they give up and say the diet didn’t work. 

      And I’d steer clear of that sweet potato until you really have your diet under control.  The main issue here is that you’re still in the very early stages of the diet and this is a long term solution.  I’d recommend committing to at least 6-12 months on a strict NSD before adding back foods like bananas, much less sweet potatoes. 

      Good luck!  And thanks for sharing.
      Bob

  • Dbchernicoff

    Bob- Thanks again for all of your help. I was just recently diagnosed with inflammatory spondyloarthropathy and found out I was hla-b27 positive. So not quite AS…yet.I’ve had pain in my right SI joint for 5 months now and on and off again rib pain in my back left side. The rib pain has subsided but the inflammation has spread to my hip and buttocks area on my right side. These are the flares that render me useless. As of now, I have been on the diet pretty strictly for about 3 weeks now. No starches but have messed up a few times by going out to eat. I will say that beer and whiskey does not seem to have any effect in fact- I often feel better the next morning after drinking. While I am not completely pain free I have noticed a reduced amount of inflammation in the SI joints and around the hips and butt.I’m not taking any NSAID’s at the moment and was able to go snowboarding 1 day on a recent trip which I really thought I would not be able to do.  I’ve found the diet to be confusing and difficult, but with Bob’s help I have definitely made it easier on myself. Even still I have questions as they keep coming up all the time.1. What if any supplements have helped you?     fish oil (brand?), zinc, evening primrose?2. Have you found protein shakes to bother you? Perhaps the sugar involved? or using whey compared to soy.3. I remain carb conscious. Mainly because I feel better when I have enough in me and I don’t necessarily need to keep burning fat. What are some really good starch free foods that have lot’s of carbs?4. Dairy does not seem to affect me. I’ve had some really good days while eating cottage cheese,yogurt, milk and cheeses but is it something I should try to cut out anyway.5. Have you talked or met anyone that the diet really hasn’t helped much?I’ve been diligent about my food journal and recording pain but at times I’ll have a flare and it seems like I’m back at square one..even when I do everything right. Tonight I’m going to work in a sweet potato and see how I react. RIght now the ski trip was my own personal victory for being in so much pain the last few months. I can only imagine you poor bastards that have been dealing with this for years of your life. Good luck all!

  • countlambda

    I’m curious if glycogen ever caused any problems. It’s similar to starch as far as I know, and would be found in liver. Also a iodine test of liver before and after cooking would be interesting, but maybe I’ll buy some iodine myself.

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

      That’s an interesting question.  All organ meats are completely safe on this diet as far as I know and also from my personal experience.  I love liver and eat it once in a while without ever having any sort of reaction.

  • http://100percenthealth.us/ Brian Zajac

    Hey Bob,

    About a month ago, you mentioned to give you an update on what I’m doing.  I created a blog on my experiences restarting my diet.  They include:- 21 day reboot (mostly raw diet)- How chiropractic works with the system- Recipes on “safer” foodsI would value any input on the site that you (or anyone else reading might have) and commenting on anything you think people could benefit with any future blogs I make. The blog is at http://100percenthealth.us/

    Thanks!

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

       Hi Brian,

      Thanks for the update!  Glad you’ve put together a blog as it’s always nice to read about another person’s experiences.

      I see a couple of “questionable” items on your list from a pure NSD perspective: hummus and bananas.  Hummus is a huge no-no for anyone on the NSD and is my personal kryptonite.  Literally, the worst flares I’ve ever had were from hummus.  Bananas are ok if ripe and also if you’ve been on the NSD for a while and are adding back borderline items.  But you’ve got to clean out your system for a few months before trying to add them back.  I don’t think you’re going for pure NSD on your blog and so the above my not apply, but just my 2cents.

      Hopefully, you’re getting enough calories on a mostly raw diet.  I did a 28-day raw fast some years ago and lost a lot of weight.  My feeling now on fasts and raw foods is that  both are an important part of a healthy diet, but my fasting is limited to one 24-hour period per week.  Raw foods i eat in abundance, but I also make sure to eat lots of good grass-fed beef and good fish like salmon.

      Hope your diet continues to bring you relief!

      • http://100percenthealth.us/ Brian Zajac

        Hey Bob,

        Thanks for the clarification – I mean it, thanks!  I’ll stay away from hummus with a 10-foot pole now that I know the outcome.  As for bananas, what would you substitute for them (that mimic the sweetness & consistency) in smoothies?  

        For the meat, I am very concerned with my body having too much acidity in it and am working more towards an alkaline body.  And yes, I too have lost a lot of weight – I’m in the 140s right now and haven’t been there in over a decade.  So there’s a balance I need to strike if I hope to sustain the weight and not keep losing (hitting 2150 calories per day with raw veggies & fruit is unsustainable for me).  

        As always, feel free to comment on my blog and add any additional information that would help.  With teamwork, I think we can all get to where we need to be efficiently.

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

           Hi Brian,

          I eat bananas now without any problems, but I stayed away from them for a couple of years when I first started this NSD.  As long as they’re ripe they seem to give me no problems.  I’ve used a combination of avocados and honey to mimic that texture, but you gotta be careful and get the combination right;-)

          Sorry, but I think the whole “acid/base” body thing is bullshit.  That argument has always sounded like so much Vegan nonsense to me.  Humans evolved eating meat and fat and I see no harm in eating a diet which includes plenty of grass-fed beef products especially when you’re trying to maintain a healthy body weight.  If you’re losing too much weight on your raw food diet then maybe it’s not the right diet for you and you need to add back more calories in the form of animal products.

          Honestly, I feel that the goal of anyone using diet to treat AS should be relief of their pain and swelling.  The best way to relieve your AS associated pain and swelling is to starve the Klebs.  The only way to starve the Klebs is to deny them food.  Cut starch from your diet and you are denying them their food.   That is a simple cure for many, many people with AS.  Why complicate it unnecessarily?

          Adding back raw foods is fine, but it’s neither here nor there as far as the above logic goes.  Occams’ razor, you know?  Why keep adding back tons of shit like bee pollen and tumeric when the real key to health for an AS sufferer is SUBTRACTING the starch? 

          • http://100percenthealth.us/ Brian Zajac

            Bob,

            Thanks for the avocado & honey suggestion.  They’ll add some more fat/calories, but that’s not an issue to me.  

            You also bring up a good point about adding too much “stuff” and just make sure not to eat starch.  However, I find AS is like an iceberg.  The inflammation is the tip & the rest below is the real problem.  Like most on the SAD (standard american diet), we’ve abused ourselves tremendously over the years.  After speaking with a nutritionist, I found out that the processed foods along with the junk they put into meat needs to be fixed.  And if the Kleb is residing in the stomach, you’ve got to fix the gut 1st instead of just starving the Kleb.  Not only that, but how many other issues is the body going through after 30+ years of “junking it up”?  That’s why my base is NSD & make my fruits & veggies #1.  Plus I’m fixing my gut with probiotics since the antibiotics I took for two surgeries I had in the past two years wrecked me up.  Keep in mind most of the stuff won’t be needed after 6 months – a year.  This is only to get my body back to where it needs to be.  

            Speaking of probiotics, I take the Good Belly Big Shot.  All sounds great except 1 thing.  Take a look at the label:  http://www.goodbelly.com/uploads/2011/04/goodbelly_bigshot_sell_sheet.pdf

            Ingredients:
            FILTERED WATER, ORGANIC OAT FLOUR, ORGANIC EVAPORATED CANE JUICE, ORGANIC BARLEY MALT, NATURAL FLAVOR, LACTOBACILLUS PLANTARUM299v.

            What concerns me is the organic oat flour.  In that small dosage (along with the size IMO is probably under 5 microns), do you think it would cause any NSD flare-ups?  I’m just too early in the process to know.

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

             Hi Brian,
            How long have you been on a strict NSD?

          • http://100percenthealth.us/ Brian Zajac

            Almost a month.  But I’ve made a few screw-ups along the way (i.e. today & had some lentils in soup & found out afterwards &*U#$&*!!!!).  

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

            Brian,

            Here’s my unsolicited advice: for the next 6 months try to adhere to a strict no-starch diet.  Cut all starch from your supplements (including starch found in probiotics).  It may be a bit premature for you to decide that the NSD alone is not enough and that you need to add additional nutritional regimens to your treatment.  You might be surprised to find that after 6 months or so that the NSD in and of itself is enough.

            You said, ” After speaking with a nutritionist, I found out that the processed
            foods along with the junk they put into meat needs to be fixed”.  I agree with the statement about processed foods.  They’re for shit and should be avoided.  I buy my meats from a local grass-fed ranch.  Not sure what “junk” the nutritionist is talking about but these cows walk around in a field and eat grass.  There’s nothing added.  The omega-3 content of grass-fed beef is as high as salmon.  Speaking of which, adding omega-3′s in the form of fish oil is a good idea for anti-inflammatory properties.  At least that’s been my experience. 

            Klebs reside in the large intestines. 

            Agreed that you have to heal the gut, but I think you may find that by adhering to a strict NSD your gut will start to heal over time.  Especially if you are managing to avoid NSAIDS. 

            You should be able to find a probiotic in pill form that does not contain starch. I’ve used Mark Sisson’s probiotics: http://primalblueprint.com/products/Primal-Flora.html, they’re expensive, but I am pretty sure they’re starch free.  I’m sure there are other ones out there, but these have worked for me.

            It’s likely that the majority of nutritionists have no direct experience with AS, and so you’ll need to keep this in mind when taking their advice.  Also, most nutritionists adhere to the low fat/whole grains theory.  ie: animal fats are bad and whole grains are good.  Both statements are total bullshit.   Read the Dr.s Eades, Mark Sisson, Dr. Cordain, Robb Wolff, etc.  And Denise Minger does a great job of ripping apart the Vegan bible (The China Study) on her website here: http://rawfoodsos.com/the-china-study/ . Plus, she’s mostly  a raw-foodist and has a really good perspective and brilliant analytical mind.

            Good luck!

          • http://100percenthealth.us/ Brian Zajac

            Bob,

            First of all, I truly appreciate all the advice.  It’s really nice to see someone on the other side of the AS rainbow.  

            I agree with you about quality of the meat (grass fed, no hormones, etc.) and am a bit jealous that you can get it directly from a local ranch.  My issue is more with removing processing 1st & focusing on rebuilding the gut.  And yes, I meant larger intestine for the Klebs – I’ll remember that next time.  Thanks for correcting.

            I avoid NSAIDS like the plague and only use them when I’ve got a huge flareup (the ones that take you 20 minutes to get out of bed – man those suck!)  I’m taking Enbrel as needed and trying to make it 1X per 2 weeks or longer.  

            Great probiotic suggestion.  I did some more digging and found this one too:  http://www.gardenoflife.com/ProductsforLife/RAWDIGESTION/RAWProbioticsMen/tabid/2016/Default.aspx   Keep in mind this is what I’d use for the 6 month period & taper off and go to your type of one-a-day “pill”.  

            It seems like whole grains is the essence of starchy foods.  So I just avoid altogether.  I’ve been advised of whey protein or hemp to bulk up (so I don’t lose too much weight), but I’m still skeptical as I haven’t done the research yet.  For you, is meat enough to keep up the weight?  Or is it something else.  

            BTW, I’m going to ping you a private message after this.

  • Amy

    Hi Bob,

    What a great blog!  I just posted this in the KickAS site, but I found your blog though some other posts, and since you seem so well-informed, I thought I might send my questions your way directly!

    I was recently diagnosed with what my rheumatologist is calling
    seronegative spondyloarthropathy, which is the same as AS (right?)

    Before
    discovering the kickAS, I was investigating doing an anti-inflamatory
    diet (eg Dr. Weil), as I have read that my issues are due to
    inflamation. I see that the low/no starch diet is encouraged here,
    which is somewhat different. Do you know anything about the anti-inflamatory
    diet, or have any thoughts on it?

    With regard to the low/no starch diet, I had a few questions as well:
    –how does it differ from a Paleo diet?
    –do people eat hummus on this? (I noticed chick-peas were out, but maybe some people do ok with them?)
    –what about soy products?

    Thanks so much!
    Amy

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

       Hi Amy,
      Glad that you found kickas.org and my blog.  That’s a great support website. 

      Yup, sounds like you’ve got a form of AS.

      Yes, I’ve seen various types of anti-inflammatory diets like Dr. Weil’s.  Those are fine for folks who have general inflammation, but AS is caused by a bacterium which feeds on starch (actually, sugar, but starch is the only form of sugar long enough to make it to the bowels).  So you need to cut out the starch in order to starve the bacteria. 

      Hummus is not ok on this diet.  It’s pure starch and would send me into a weeks long flare if I ate any.  Stay away from it!

      This diet is very similar to Paleo with the exception that you need to avoid “acceptable” Paleo starches like sweet potatoes, etc.  Soy is fine.

      Good luck!
      Bob

      • Amy

         Thanks, that’s really helpful.  I noticed that you mention that you really limit your fruit, but it seems like dried fruit is a fairly popular option on the kickas website.  To be honest, the only dried fruit I like is prunes, which didn’t seem to make the iodine black.  Would you suggest I proceed with caution, or should it be ok?  Thanks again.  And, BTW, your blog is very well written!

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

           Actually, there are lots of safe fruits, so don’t limit yourself to just dried fruit.  Any kind of melon, berries, plums, oranges, grapefruit, etc.  Apples are suspect, especially when you first start the diet, because they’re often picked green and “ripen” later during storage.  But there are many, many fresh fruit options available.

          Thanks!

          • Amy

             Thanks!  Oh, yes, sorry, I should have clarified, I mainly eat fresh fruits (checked my apple today with my new iodine bottle!), but I’ve always stayed away from dried fruits as they seem so high in sugar. That’s why I was a little surprised to see them favored by some on the other website, as most people seem to be avoiding sugar as well (though I know it’s a natural sugar).  In any case, it sounds like it should be fine for me to eat some prunes now and then, right?  Thank you!

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

             Sure, prunes are fine on this diet.  Eat up!

        • http://100percenthealth.us/ Brian Zajac

          Amy, I would also suggest going to your local farmer’s market (if it’s currently not the frozen tundra) when available.  You’ll be able to pick your food from the farmer’s who picked it off the tree / vine / ground / that morning.  And yes, USDA organic is the best of the bunch & worth buying over the pesticide / GMO-ridden conventional vegetables & fruits.

  • David

    Bob,   I spoke with you over two months ago regarding the diet and have posted on your blog before. I’ve purchased the paleo diet books you recommended. I still have questions.First let me say that I have tried the no starch diet strictly for a month or so. My inflammation seemed to dissipate with a lot of physical therapy and stretching but the pain never went away.I fell off the strict diet, I was desperate to see how sweet potatoes would affect me. How brown rice would fair- and honestly the pain never really went away. But I maintained my food journal and noticed that I did have some very good pain free days after eating sweet potatoes and even rice.The SI joint pains would come and go but never fully disappear. I never seemed to have problems with stiffness in my back while eating this low-starch way just the SI joints. Finally, out of nowhere about 2 weeks ago BAM!! My Si joint pain went away- the flares ceased. I had not been doing anything different with the foods I was eating. The only thing I can attribute to the SI pain going away was when I made a spinach salad and must have used some tainted veggies. I had pretty bad intestinal distress and a days worth of meetings with the toilet. Not fun- But it’s the first time that happened in the 8 months of my suffering.   After I was almost entirely convinced the SI pain went away…at least for a bit because of a “change up” in my gut. I had a bit of acid reflux the next few days so I started taking TUMS and was really just trying to get everything back on track. At this point I think I was at 3 days or so of pain free and my job had me out on location quite a bit…so, I had a turkey sandwich for lunch. I was amazed, No flare and no pain. The next day I had a tuna wrap making sure it was whole wheat, still no problems. Then my girlfriend and I went to eat tai food and I had brown rice- still no problems. I was amazed that for the first time in months I was almost completely pain free, then one saturday night we had a cookout with friends. Hamburgers, chips, popcorn, pretzels, the works! i couldn’t resist, I wanted to know what affect it would have on me so I ate like I hadn’t in nearly 2 months! The next day still no pain, but a slight hangover. I kept this up eating moderate amounts of starches for the next 3 days or so-Then it happened…slowly over the next few days stiffness started to set in on my back at night while I slept. I would wake in the morning and go straight to the hot shower to gain some flexibility- But the pain was pretty gnarly. My SI joint pain started to return and this is where I’m at now- back on a strict NSD to see what that resolves. I’m tempted to eat sweet potatoes as I’ve seen a few good pain free days in my journal the next day after having them, that and I know they hold anti-inflammatory properties… but I will hold off for now. But this experiment if you will- has raised so many questions for me. Why was I able to eat these starchy foods and not have a problem, did I just over do it?  I have been doing my share of research and it seems that a lot of theories regarding the intestinal causes of AS in the gut aren’t necessarily klebsiella but could also be other bacteria or fungi. I know Dr. Mirkin refers to the klebsiella study but some other doctors seems to think that other bad agents contribute too. And if that’s the case, are starches necessarily the worst food to be eating? And what kind of starches are we talking about? Starches in bananas and starches in a yeasty wheat bread would be different. I have no question that you have managed to treat your own case with this diet but it stands to reason that you may have just healed your gut over time with your diet. Reading about Leaky Gut syndrome and the people that treat it, it would seem that it can take up to 9 months to really heal the intestinal walls while using very particular enzymes to help with the healing. It would seem this may be something you may have done with a particular combination of diet and supplements over time. You make mention that you have been on the diet for years now…would you say that it has taken that long of a time to really change the properties in your gut? I would love to know what your personal diet looks like-maybe just a weeks worth of what you eat and supplements you take.I think seeing it written down may provide some guidance and assistance.I know you fast for a day, is this the key to purging the gut flora? Meanwhile I’m not giving up on the natural alternatives. I have scheduled an appointment with a new rheumatologist at the University of South Florida who has written a few papers in regards to AS and intestinal bacteria perhaps being a cause. I will continue the NSD diet, strict for now, but I’m open to slow digesting carbs such as sweet potatoes and brown rices.Have you looked into leakygut syndrome and how that may relate?Link:http://www.liverdoctor.com/index.php?page=liver-problems&subpage=leaky-gutAs of now my diet consists of Breakfast: broccoli and egg whites with melted cheese, berry mix or fruit and vinegar based hotsauce.Lunch: I usually turn to subway and have a spinach salad with roastbeef and swiss cheese w oil and vinegar. No Tomatos.Dinner: Chicken,beef, pork and fresh veggiesSnacks: usually Naked or Odwalla fruit smoothies ( lots of sugar but I feel better having the carbs), almonds,cashews or pistachios.It seems that drinking a light lager beer definitely decreases inflammation in my SI joints the day after a few nighttime drinks. It’s reflected in my journal more than a few times.I usually stick to Yeungling light or Coors light. But this was big for me.It may seem silly but i’m testing now whether or not the TUMS i was taking for my tummy contributed to the SI joint pain being gone. I believe the pain free days I had I was taking TUMS. It’s a longshot but what the heck.For some reason my journal reflects tomatoes may be a cause of a few bad SI flares and in my hips. Some stewed tomatoes don’t seem to bother me but I’m kind of touchy about tomatoes.Again, thanks for all of your help with me and everyone else suffering. 

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

       David,
      Best thing you can do is keep trying and making observations about what foods affect you in what way.  Glad that you’re reaching out to a new doc who’s open to the bacterial theory of AS.

      For me, I have no doubt that starches- especially corn starch, modified food starches and those found in hummus and potatoes- do it for me.  My gut has likely healed over time, but that’s beside the point as far as the cause/effect relationship of starches and my AS. 

      One of the most frustrating things about AS is that it’s different for everyone.  The NSD is not a panacea.  Your experience with it will certainly be different from mine.

      Casual observation from what you’ve written seems to show that  you’ve started and stopped a number of times without committing fully to the NSD for a significant period of time- like 6 months or more.  A few weeks to a month is probably not enough time to really get a handle on how diet impacts your AS.  I know for me that it took the better part of a year to really dial in my diet.  That’s just one opinion and maybe I’m wrong. 

      My feeling is that if the NSD shows any signs of working in the first few days or weeks then it’s worth trying for the long haul. 

      Leaky gut, fungi, other bacteria, etc: yup, there’s lots of theories out there.  I’m not an expert on them all and don’t have much interest in reading up on them beyond what I’ve already done over the last 7 years.  You might consider heading over to http://www.kickas.org to discuss those topics with folks on that forum.  No shortage of experts there.  But I get a bit exhausted by that forum.

      All this stuff really boils down to a simple equation for me: when I eat starchy foods like grains, breads, potatoes, cakes, pastas, beans, etc. I flare.  Avoid those foods and I feel as close to 100% as I’ve ever felt. 

      I’ve healed to the point now that some borderline foods like bananas and just about any spice out there does not bother me at all.  Why?  Don’t know.  Maybe my gut healed over the last 7 years as you suggest.  I don’t have much inclination to research it, and am just happy to enjoy the results of sticking to this diet.  Maybe I’m lucky as I had such a clear association between eating starchy foods and getting a flare about 4-6 hours later.  It’s quite likely that not everyone who has success on this diet will have the clear-cut cause/effect observations I had when I first started on the NSD. 

      Hope you find your perfect diet very soon.

      Thanks
      Bob

  • Amy

    Hi again Bob,

    I just read your response to David, which I found very helpful.  I’ve been on the NSD for about two weeks now, and am feeling good, but had a few more questions I hoped you could answer for me.

    –Right now, I’m not eating dairy, nightshades, bananas, sugar, or dark chocolate.  I wanted to see how I do with those at some point (one at a time), and am wondering when you thought might be a good time to test them out. 

    –I seem to remember that you said  you had a separate issue with sugar–candidiasis?–and I’m wondering how you figured out that you had it.  I know I have a strong addiction to sugar when I do eat it, and I’m not eating any now.  I’ll try adding it back in at some point to see what happens, but were there things that tipped you off?  Anything I should look for? (I’m guessing a flare up of AS is possible, but that other things can occur as well). 

    –I read the SCD book, Breaking the Vicious Cycle, and was intrigued by her approval of lentils, given that they are soaked for 10 hours.  I know you said that starchy beans don’t agree with you, but I was wondering if you had tried out her approach to lentils, and if so, if it worked for you.

    –Do you mind telling me which, if any, vitamins/supplements you take?  I’m taking a multi, calcium with vitamin d, a probiotic (just one pill at the moment, I may increase it), and CoQ10.  I was taking fish oil but it bothered my stomach, though I’m going to try an enteric coated one to see if that helps.  All of these appear to be starch free (that was a chore!).  I am considering adding vitamin C, B, E, GLA…something else?  Any thoughts are welcome! 

    –I have read a bit about the suggested exercises they give to ward off spine fusion (I don’t think I have any fusion at this point), and personally just do yoga for 20 minutes every morning, though some people have suggested that might irritate my spine.  Are there any specific exercises that you do? Any thoughts on yoga? 

    –I know you were diagnosed before you had any fusion, and I’m wondering, did they do any diagnostic tests (eg a full spinal xray) to determine that you didn’t have any fusion?  Do you live in the states?  I was just diagnosed about a month ago and am still trying to figure out what to expect/ask for from my doctor. 

    –Finally, while my back has been feeling good (without taking any NSAIDS) these last two weeks, I have been getting really tired toward the end of the day.  Does this sound like it’s par for the course?

    Sorry for the thousand and one questions.  I think it’s wonderful that you take the time to answer these so thoroughly–you are definitely helping out your fellow man/woman with your blog!

    Many thanks,
    Amy

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

       Hi Amy,

      I think I could delete everything I’ve written on this blog and simply sum it all up in one sentence: Stop eating starch and you’ll probably be fine.  Period.  Have a question?  See that sentence.  Still confused?  See that sentence and add some more time.

      Adding back foods: Keep it simple.  Read this post:http://www.sickopportunity.com/?p=118 , there’s no right answer to that question. If you’re symptoms have gone away then start adding foods back. If not, then stick w/NSD until they do.  Then experiment with adding foods back in.

      Sugar: I don’t have a medical issue with sugar, just that I like it a lot and tend to eat too much of it if I have the chance.  Simple sugars are not starch and so it technically shouldn’t be a problem to add them back in to your NSD.

      SCD/lentils:Lentils are filled with starch.  Don’t eat them.

      Vitamins: take whatever vitamins you want as long as they don’t have starch in them.  Fish oil, multi-vitamin, coq10, magnesium, etc.  Whatever, as long as they don’t have starch.

      Exercise: use it or lose it.  Do as much as you can of whatever you can as often as you can.  Yoga, skiing, lifting weights, running.  Whatever/as often as you can.

      Fusions: I have some in my sacrum and possible other places.  But I’m not concerned as it doesn’t stop me from doing anything I want.  Doctors: I don’t expect anything from mine and have stopped going.  I’m cured for all intents and purposes, why do I need a doctor?

      Tired: I have no idea;-)  Get better sleep?  Eat more?  Take a nap?  Stop thinking so much?  I don’t know you or your routine or your tolerance for the normal ups and downs that all of us feel throughout the day.  Don’t over think this stuff.  If you’re tired, take a nap or go to bed earlier.  If you’re hungry, eat. 

      Stick with the NSD and give it some time.

      good luck
      Bob

      • Amy

         Thanks Bob!

        • David

           Amy, I’ve read that feeling tired and lethargic can be a symptom of AS. I personally don’t get tired during the day but I guess everyone is different. I eat sugars often as I feel like crap if I don’t have the carbs.
          I can eat 2 plates of eggwhites, broccolli and fruit and feel hungry an hour later if I don’t get them.
            I’m curious to know what vitamins you have found to be starch free (brands) as I am struggling to find good ones.
             Since my last post I have been very strict about my diet. The bag of frozen cauliflower I was heating up and eating was testing black so I gave it up. I cut out dairy for one week but haven’t noticed a difference since I started it back up.
             Honestly I must say that It has been a few weeks since I’ve had a full on flair of my S.I. joints and hips to where I could not walk. I take that as a sign that I’m controlling the inflammation but I must admit my back and neck are still stiff at times, mostly in the morning and some of the muscles around the ribs; often feels like my kidneys are hurting. The SI joint pain has been drastically reduced the last few weeks and I’m able to get back into the gym and do some light workouts with weights.
          Let me also say that I’ve only taken Ibuprofen twice in the last month and this was when my back was at it’s stiffest.

           I’ve been diligent about a stretching routine and did another 2 weeks of physical therapy. I’ve been using a backjoy (seat orthodic)

          http://www.backjoy.com/backjoy/pages/index.grid

          For sitting at work, which I must admit has helped with my SI joints. I was pretty skeptical at first.
            I have discussed stretching extensively with my physical therapist and as long as my SI’s are not bothering me I can be more active.

          Every morning while lying on my back-

          -I do a straight leg hamstring stretch usually with an elastic band (holding for 20 secs)

          -Piriformis stretch (20secs each leg)
          -I put 2 pillows between my bent knees and squeeze together (10x)
          -with knees bent, I lean up and push my knees out against my hands while holding resistance against my knees.
          -10 straight leg circles
          -pelvic arches (10x)
          -pelvic circles (10x)
          -Then I usually get into childs pose (yoga) for a few mins.
          -walking definitely

          Let me also offer up these links-

          http://lib.bioinfo.pl/pmid:22100286

          and

          http://lib.bioinfo.pl/pmid:21853013

          John Carter, a research rheumatologist at the University of South Florida has written and contributed to a few different papers in regards to AS and other auto-immune related reactive arthritis. He has studied the klebsiella bacteria as a cause and is also looking at a type of chlaymadia bacteria that they have found present in some synovial fluid tests. They had one successful trial of treating a patient with a few different antibiotics for 9 months.

          I’ve been following Bob’s advice and testing more and keeping my journal pretty diligently. I’m convinced that if Bob can beat this than I can too.

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

            A good place to find lots of information about using antibiotics to treat AS and RA is http://www.roadback.org

          • Amy

             Hi David,

            Thanks so much for all of the great info.  I’m glad you’re feeling better–sounds like the diet is working!  I think there is definitely something to it, as I was feeling great on it, and then just spent a couple of days in Las Vegas, and I failed to exercise as much self control as one would have hoped at the buffets.  And, guess what–my back flared up! 

            Happily, I haven’t been as tired lately–I was thinking it might be the drastic change in diet that was causing it.  I do find that sugar makes me very tired fairly quickly (as was hammered home in Vegas), so I’ve been avoiding it.  But, clearly, everybody’s body is different.  I have also been avoiding nightshades at the moment, but will try them out again next week.  The paleo folks have an auto-immune protocol that is VERY restrictive (no nuts, even!), but might prove informative.  http://www.nutrisclerosis.com/Blogs/EntryId/48/What-is-the-autoimmune-protocol-of-paleo.aspx

            I found that I can’t handle a lot of dairy–I tried increasing amounts for 3 days and then eventually flared up (I think, but am not sure, that my flares happen a day or so later).  Eventually once I’m done with all of these various eliminations I’ll try a little bit and see what happens.  I’m trying to be very exact at this stage, with the hope that eventually I can reintroduce a lot of things (I’m also a researcher, so try to be somewhat anal about it.  With the exception of Vegas, of course!).

            As for vitamins, here’s what I’ve found:
            New Chapter Organics one daily (multivitamin…I use the woman’s formula)
            Country Life Calcium/Magnesium
            Probiotics:  I’m currently using culturelle,but may switch to Garden of Life RAW, or Udo’s

            I also take CoQ10, but I think most of those don’t have starch anyway.  I’m trying out an enteric fish oil, as the regular kind upsets my stomach, but again, those don’t usually have any starch anyway.  I’ve found that the vitamin people at whole foods are quite willing to go through the vitamins with me and see which ones have starch.  For the ingredients I can’t figure out, I use the legal/illegal list from the SCD  http://www.breakingtheviciouscycle.info/legal/legal_illegal_a-c.htm 

            Anyway, thank you both for all of the tips, I will look into them.  Also great to know about the exercises.  I’m starting to see my PT again soon, now that I have the diagnosis, and we’ll see what she comes up with.

            Best,
            Amy

  • Katie_horton26

    hi everyone,

    just found this website and been sitting here reading EVERYTHING for the last hour!! Reading your stories brought a tear to my eye.  Like others on here i am very fit, strong and healthy so could not understand why i kept getting intense pain in my si joint, which limited the classes i could do at the gym and put a stop to my running.

    I too have had days where i physically cannot walk or put any weight on my left leg (my left si joint is affected), and found it frustrating, depressing, exhausting and embarrasing to be limping along the street like an old woman when i have only just turned 30!

    My AS was finally diagnosed just a few months ago after i suffered terrible eye inflammation over christmas and new year. the iritis continued to get worse and i went misdiagnosed for weeks being given antibiotics and eye drops for a suspected eye infection. luckily my sight is fine, but i could easily have been left partially blind. this flare up in my eye prompted blood tests which came back positive for the HLA B27 gene. I too felt relief that i finally knew what was wrong with my eye and my si joint and that my  pain, along with my IBS DID have a cause and it wasnt “all in my head”.

    I recently bough the Low Strach diet book and have enjoyed making the cakes in it! (sadly i have a sweet tooth!!) and sticking losely to the low strach diet. i have been cheating a bit and eating gluten free bread and the odd potato and banana. The pain in my si joint has gone completely, which feels very strange as the pain has been constant in it for about 3 years. i do have stiffness in my neck and upper back though, so i really need to cut out all starch and see how i fair.

    I have not yet been to see a rheumatlogist, and my appointment is on the 16 May, so i hope to get some more infromation at this point on how progressed my condition is. I have no idea if i have suffered any fusion, so am keen to find all this out so i know what i am up against.

    sorry for rambling on but the point of my post was to ask if anyone can give me any tips on a few items:

    (1) breakfasts – i have been having yogurt with omega sprinkle on top, a mix of pumpkin, seasame, linseed and sunflower seeds with a bit of honey. any other breakfast suggestions?

    (2) my second question relates to exercise. i used to run and managed to complete one 10k before my si pain became too great and i had to give up. I watched the London Marathon last week on tv (i am in Scotland) and it made me want to run again!!! i considered even running to raise money for a AS charity? How do other people get on with running? has anyone tried to employ the Chi running technique?

    Also i am not sure if anyone is familiar with the les mills gym classes? i am keen to get back to body pump, but found  lying on the aerobic step to do the chest and tricep exercises too painful on my si joint. my instructor has suggested angling the step as they would for a pregnant lady to take the pressure off my pelvis. i have yet to try this out, but wanted to pass on the tip to other si joint victims!!

    i look forward to hearing for you.

    Katie

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

       Hi Katie,
      I’m really glad you’ve found my blog and appreciate your comments. 

      Sounds like you’ve got the right idea regarding your diet.  Cutting out all starch is where I’d always advise people to start.  And the good news is that your SI joint pain may not be an issue if you respond well to the NSD.

      Regarding running: I have a love/hate relationship with running.  I love trail running in the mountains but hate almost all other types of running.  Odd, I know.  I had to give up running several years ago because of knee and hip pain as well and thought it was just something I’d never be able to do.  Then I read Christopher McDougal’s book, “Born to Run”, and all that changed.  He explores barefoot/minimalist running which forces your stride to change (very much like Chi running from what I can see).  For me, it was an almost instant cure.  Great book and I’d highly recommend it.

      Regarding breakfast: I go heavy on protein and fat.  Eggs are always a perfect choice in the morning for me.  I have the same sweet tooth as you in regards to baked goods, etc.  And the only way I’ve found that I can be satiated on the NSD is by having lots of protein and fat.  Berries of all kinds are a safe option as well: blueberries, raspberries, strawberries, etc.  Another one of my “go-to” breakfasts is simply eating leftover dinner from the previous evening meal.  I’ll warm up some leftover roast chicken or salmon, or even put an egg or two on top of the leftover fish.  Eating dinner for breakfast takes a little getting used to, but it’s an easy option on the NSD since we are cutting out all the “traditional” breakfast foods which are heavy on starches.

      Good luck to you!
      Bob

    • David

       Katie, Bob and Everyone else,
          I stuck to the NSD for at least 4 months, very strictly. I did experience some relief but I still had SI joint, lower back pain and stiffness. I read Bob’s blog again and it convinced me that everyone is different. I tried another round of elimination foods and it wasn’t until I eliminated sugar that I found relief. Right now, I can tell you that I am having better results staying away from anything with sugar then I did with 4 months of strict eating on the NSD. I am virtually pain free and eating sweet potatoes, whole wheat flour breads (occasionally) and peanut butter. I just started 15mg of meloxicam (NSAID) as needed and have had even more pain free days then I ever did on the NSD diet. I really think sugar plays a part in inflammation as well as the gut. For me the NSD was a good start, but I think it’s about trying different foods out. Milk I have no problem, meats no problem, long grain brown rice no problem. I may have a sensitivity to some nightshades. Keep working out and stay active.

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

         Hi David,
        Glad that you’ve found a diet that works for you!

  • Granite64

    I wonder if any one has a had a very bad experience with “probiotics” specifically the lactobacillius bacteria found in probiotics and activia yogurt? 5x I developed cornea ulcers from ingesting these products over the last 5 years. On wikipedia there is a sentence that people with AS should not ingest probiotics as AS is an autoimmune disorder. This is baffling to me. I quit eating food with yeast (everything has it) and started feeling better immediately.

  • js

    Hi! I was just diagnosed with AS last week, and my Rheumy is giving me a choice between Enbrel and Remicade. I want to try the NSD first and see how I feel. Where can I buy iodine to test what I eat? I looked at Walmart and did not find any. I also bought some salmon oil capsules. I found it to be a pretty strong anti-inflammatory. Have you ever tried it?

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

       Hi There,
      Walmart carries iodine.  Check the first aid aisle.  Remember NOT to eat anything you put the iodine on.

      Also, be careful with pills and supplements and such if you’re going to try the NSD.  You need to read labels to make sure starch isn’t in the capsules.

      Yes, trying the NSD before going on Enbrel or Remicade is a very good idea.  Many of us have found that we can back off of our meds entirely.  Hopefully, you’ll be one of the lucky ones.

      Good luck!

      • js

        How long before you noticed any effect? And can you give me an idea of your usual daily diet? I have started in Wednesday and stopped taking ibuprofen in Thursday, and today, the backpain is back. I have not removed sugar yet (this is my poison) but I will if I have to.

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

           So keep taking your ibuprofen until you’ve got the diet dialed in.  Typical diet is herehttp://www.sickopportunity.com/?page_id=36

          I started seeing results pretty quickly, within the first week.

          • js

            I cannot get through this link, Bob. Please send again.

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

             the link is fixed

          • js

            Doing NSD for a couple of weeks now. I haven’t really noticed any changes yet but I stopped taking ibuprofen anyway. I can manage without it. But I have lost about 7 pounds and my clothes are starting to fit better (I gained 15 lbs in the past 2 years). So this diet is definitely good for something :)

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

            Nothing wrong with that!  Glad the diet is working on some level.  Give it a chance and try to get lots of variety in your diet.  Visit http://www.marksdailyapple.com for a peak into the Primal food movement- very easily modified into starch free.  And don’t suffer needlessly if you’re in pain- take your meds, follow your doctors orders and maybe slowly cut back when you’re feeling confident.  Good luck!

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

    Update: I am now eating apples and spaghetti squash again without any flares.  I have found that when I can go for long periods of time on a very strict NSD then I can reintroduce some “suspect” or borderline foods back into my diet .

  • js

    Have you heard about Chardonnay being a good at getting rid of Klebsiella? Yes, the wine. Here’s a link I found: http://newsarchive.asm.org/sep02/topic5.asp I think I’m going to give it a try!

  • Karyn

    Hi Bob.

    Question: I read that spices are starchy and that spices are different than herbs. Wondering your thoughts on this.

    I’ve been doing very well with the NSD for a month but have not focused on spices.

    Thanks.

    Karyn

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

      Hi Karyn,

      Some spices are starchy- like curry and peppers. You may have to avoid them and add them back just like other questionable foods.

      Personally, spices don’t bother me at all, but that may be because I’ve been on the NSD for so many years. I tend to have severe reactions to VERY small amounts of corn starch, but very small amounts of starchy spices do nothing to me.

      Good luck!
      Bob

  • M. Sami

    Hi Bob

    I’m deeply thankful to people like you, who are trying to help other people. I hope i can cure my AS and try to help others with my experiences…

    I am having very difficult times with constant back pain for over a year. And since i saw NSD success stories i am very excited.

    My question is : I am HLA-B27 negative. Does this diet work only for HLA positive patients?

    • Sean

      Hi Sami

      Bob – I hope you do not mind me commenting.

      I am HLA-B27 negative too – AS sufferer and my diet without grains helps me massively. I do resort to rice and potatoes sometimes – but avoid if I am in an active stage.

      I believe there are two stages in play – 1 gut damage due to food allergy, 2 klebsiella. If you can minimise 1 then then 2 will be less of an issue.

      Bobs approach is the rolls royce approach and is the safest bet for success – everyone is different – but I come from a viewpoint that grains and milk are bad for most.

      Please try it – it took me less than 2 weeks to feel 50% better – I am 47 now and started on a diet change at age 27. No medication ever apart from Ibroprofen for a few nasty flares. I do supplement with vits and minerals too though!

      Good luck.

  • karyn

    Hi Bob and others.

    Just wanted to let folks know that I have added a seemingly fine food to my starch list. I had some balsamic vinegar on a salad a couple days ago — from a cafeteria style restaurant. I had a massive headache afterward. I went over the food I ate. After researching balsamic vinegar, I learned that some cheaper brands use high fructose corn syrup as a filler — even in just the balsamic vinegar (rather than a vinaigrette type dressing)

    So thought I’d share that info — and also ask if anyone else has experienced a problem with certain brands of balsamic vinegar.

    Karyn

  • Greg Thomas

    Went off Embrel in August. A month later my AS came back with a vengence. Had to take ibuprofen and tylenol at maximum safe levels just to get out of bed and move during the day. Since then, I’ve been on the AS diet for 1 1/2 months, eliminating all dairy products as well for my AS. So far no difference, other than the NSAIDS work a little more effectively than before. Any advice?

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

      Hi Greg,

      What version of the AS diet are you doing? What’s a typical day/weeks worth of food look like? Sad news is that this diet does not work for absolutely everyone, and it can be a long process figuring out what causes flares. NSAIDS can be a double-edges sword as they can cause gut leakage which is pretty bad for us AS’ers.

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

    Greg- are you a vegan?

  • http://www.facebook.com/brianzajac Brian Zajac

    Bob, for some reason my Disqus comment reply won’t work. Hopefully posting this update does the trick.

    I’m doing a modified version of the Specific Carbohydrate Diet (look near bottom of page): http://www.100percenthealth.us/6-months-to-year-1/my-autoimmune-medical-breakthrough/. Once I have done the “experiments of pain”, I’ll post it on my daily routine: http://www.100percenthealth.us/my-goal/my-daily-routine/.

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

      Disqus is acting kind of weird on my site. Hope I’ve solved the problem. For some reason it keeps putting your comments in spam, maybe because of the links? Not sure, but hope I’ve fixed it. Sorry for the inconvenience!

  • Yudhvir

    Hi Bob,
    Thanks I found your site. Yes, I was introduced to the starch free diet and I am following it for the past 8 months with the hopes to cure my 12 year old AS. Yet, I have fair amount of pain in back and neck. I am not sure what I am doing wrong. I also test my food with oidine to make sure there is no starch, but I must be missing some of that. Just to let you know I do have a drink or two with dinner, but the drink tested negative for starch. If there is anything that you can suggest that will be really helpful. I have lot of pain in the body and my neck movement is very limited.
    Thanks,
    Yudhvir
    yminhas@yahoo.com

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

      Hi Yudhvir,
      I’m glad you’re trying the NSD and hopefully it will start working for you. Can you give me an example of what your typical diet includes?

      Also, I’ve found that fasting will help me to get over a particularly painful flare in the least amount of time. Normally, a 24-hour fast will do it and I think it’s worth trying as long as you don’t have any other underlying medical conditions which wold make fasting a dangerous thing to do.

      Thanks,

  • Maryl

    Hi Bob,

    Just found your site after a colleague shared the successful results of a non-starch diet for his autistic son, and who did some preliminary research on AS for my husband. I cannot tell you how happy I am to have stumbled upon your blog and am trying not to get too overly hopeful, but needless to say I am embarking on a NSD for him (and by extension me). One of the most helpful things I gained from delving into your various posts is to not give up but, rather, continue tweaking if you don’t find results even after an extended period. Your experience with the tiny amount of starch on the pill supplement was incredibly illustrative of the degree of sensitivity one can have. My husband suffers so much (as all AS patients do, of course) and has an incredibly stressful career, and a whole host of other problems that are likely related, and he’s only gotten worse, so this is a lifeline. Like you said, in the face of all that, the diet cannot be THAT HARD!! Not when you can trade misery, pain and immobility for even one good week a year. Wish us well. And thank you. And thank you to everyone else here who has shared their experiences!

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

      Hey Maryl,
      Glad you are finding the info here useful! Yes, it’s really not a hard diet at all. My diet is very close to a pure “Primal” diet ala Mark Sisson from marksdailyapple.com. And he’s got lots of support, books, and recipes on his forum so i never feel like I am running out of ideas.

      Good luck to your husband and feel free to let me know if you ever have questions.

      Bob

  • Jubal

    I have tested negative for the HLA-B27 gene but, based on my history and symptoms, I am confident I have USpA. I have also had the disease for 45 years. Is it possible for the NSD to work for me?

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

      Yes, it’s possible for the NSD to work for you.

  • JUBAL

    Hi Bob;
    I have been on the NSD for about six weeks. I don’t think there has been any improvement. In addition, over the past few weeks I seem to have developed a mild case of what seems to be IBS. I’ve never had any problems of that type before. Do you think it could be due to the NSD. If so, why and is it likely it improve over time?

    Jubal

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

      Hi Jubal,
      Can you describe a couple of days worth of food for me? What, exactly, are you eating and drinking for breakfast, lunch, and dinner.

      Thanks!

  • Jubal

    Hi Bob;
    Here is a summary of what I have been eating:
    Breakfast:
    Eggs and egg whites, turkey bacon, avocado, fruit and/or fruit juice.

    Lunch & Dinner:
    Meat or fish, green salad
    and/or vegetables, avocado, eggs, fruit (mostly apples).
    Throughout the day I eat a lot of walnuts and dried cranberries.
    I only drink coffee and water.

    This is pretty much what I have always eaten. The only thing that has changed is I have deleted all starchy foods and dairy products and I have made up the difference by eating more of the above.

    I suspect the diet has changed my bowel flora and that must be causing the mild IBS, but i am not sure why. Have you heard of anyone else having this result? What do you think?

    Jubal

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

      Hi Jubal,
      Your diet looks pretty good. I’ve never heard of someone getting IBS from a diet like this but I suppose anything is possible. Maybe try cutting back on the walnuts/cranberries mixture as it could be causing gas. Substitute another portion of lunch/dinner instead and see what happens.

      The only suspect items (in regards to hidden starch) would be the apples (are you iodine testing them?), and the turkey bacon.

      Good luck!