My Story

The bad news is that around 2005 I was diagnosed with ankylosing spondylitis, which is  an (supposedly) incurable auto-immune genetic disorder.  As my doctor told me at that time, “It’s something you’ll die with, but not from.”  If that’s not a turd wrapped in a ribbon I’m not sure what is.

The good news is that I’ve cured myself. I’m symptom-free 100% of the time, cured.   Right, I know exactly what you’re thinking, “Here’s where this schister tries to sell me something…”.  Wrongo. I’m not selling anything.  I am here to tell you that if you have ankylosing spondylitis (or a host of other related auto-immune and inflammatory diseases) then you MAY be able to cure yourself with diet alone. (If you’re in the middle of a flare right now and just want to get started right away without any more build up or personal accounts, then go directly to the Get Started Right Now section of this blog above)

No kidding.

For those of you who already have ankylosing spondylitis (AS from now on as I hate typing out that ridiculous name) you know how awful this disease can be.  I’ve been there.  Like most of you, I suffered undiagnosed for about 12 years.  Chronic, massive, debilitating pain from out of nowhere would strike, seemingly at random, for years.  My pain would normally last for several weeks to a couple of months and then it would go away juuuust long enough for me to forget how terrible it was…and then, just when I’d slipped back into my normal life, it’d strike again.

My “flares” (as these bouts of intense pain are called in The AS Community) defined my life.  I was literally living from flare to flare.  More like I was living between flares and just hanging on during them.

During a typical flare I could look forward to the following:

  • Intense mid-back, hip, and rib pain.
  • “Rolling” out of bed.  Some of us folks w/AS literally have to work our way out of bed in the morning.  It would sometimes take me 10 minutes just to slowly work my way onto my side, get my arms underneath me, slowly push first one leg and then the other off of the bed, then use my arms to push myself into a sitting position- or, if the flare was especially bad I would literally flop onto the floor and use the bed to stand up.
  • No sneezing.  No kidding.  I could go months without sneezing.  Every time I would start to sneeze my body would cut it off mid-sneeze due to the intense pain in my ribs caused by the sudden chest expansion during that quick, pre-sneeze deep in-breath.  I’ve likely got a few fusions of my ribs and it literally felt like my ribs were breaking when I’d sneeze.  I once broke my collar bone and several ribs after a car accident so I know exactly what broken ribs feel like, and sneezing gave me the same feeling.  I recall “waking up” on the floor a couple of times after blacking out for 2 or 3 seconds during a sneeze.  Doesn’t that sound fun;-)  ?
  • Getting stuck while dressing.  That sounds weird, right?  But I would constantly get stuck as I was putting on my pants.  I’d have to bend down while holding on to a dresser or the bed and try to lasso my foot into my pants like a crippled cowboy.  At some point during this process my hips would occasionally say “enough!” and they’d just lock up.  It would almost feel like one of my hips was popping out of the socket (during my undiagnosed years I went to doctor after doctor explaining how I must have dislocated a hip while trail running years ago and that it would occasionally pop out again causing severe pain.  Of course they all thought I was crazy and that the pain was just in my head.  Nothing worse than being in pain and being told it’s all in your head, huh?) and I’d just hang there half-pants-less, and wait for the pain to pass.
  • Getting in a car didn’t work.  Try getting in your car while keeping your spine perfectly straight.  Hard, right?
  • Sleep was elusive.  I didn’t realize how much I got up during the night until I got married and my wife pointed out that I got up a good dozen times every night.  I’d just gotten used to not really sleeping and having to get up every few minutes or hours due to the bedsore-like pain in my back caused by laying down.  Pretty lame when sleeping hurts!

So you get the idea.  I’ve gone from being in pain most of the time to being 100% pain-free without drugs or painkillers (“natural” or otherwise) and am completely convinced that my diet is the key.

My Diet

I started experimenting with diet almost immediately after getting my diagnosis.  Drugs and I don’t get along too well, and so the powerful NSAIDS I was taking were impacting both my mental and physical state.  They were helping with the pain, but at what price?

I found KickAs.org within a few weeks of getting my AS diagnosis and it was a life saver.  KickAs is the greatest online community of AS suffers in the world.  There are many, many folks who are smarter than me and know immeasurably more about AS than I do, so please visit the site asap.  I immediately started experimenting with The London Low Starch Diet (LSD).  The LSD didn’t do much for me (That’s a funny statement in a different context, isn’t it?)  and so I had to move on to the NSD, or no-starch diet.  It took me several years of experimenting before I got things really dialed in, but I’m finally familiar enough with this way of life that I’m completely off my meds and pain free.  I’m hoping that by sharing my experiences with this diet that I can save you some of the pain and confusion I went through along the way.  Because the truth is that this “cure” is quit simple.  You just need to try it yourself.

 

2017 Update

As of March, 2017 I still do not have any AS symptoms.

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  • Karyn

    Thank you very much Bob. I have had pain, deep constriction around shoulders, ribs, and so many other places, and muscle spasms for over 30 years (seems crazy to write that but it’s true). I have also dealt with iritis for about 8 years. I would bet money that AS is the correct diagnosis (was previously told that muscle strain from mild scoliosis was causing inflammation but the eye doctor didn’t buy it). After reading the symptoms of AS, it all makes sense — spot on. I will soon have the test — but i didn’t wait with respect to the diet. I had already been reducing starch for weight loss and was noticing an improvement in my symptoms. So when I read about the NSD, I put it together immediately and jumped on it. As of today, it’s been 3 weeks. I have followed the NSD to the letter and I can honestly say that my symptoms have improved by about 87% (reluctant to go as high as 90% just yet). But the improvement has been absolutely dramatic. I have much more chest expansion and better breathing. Areas in my abdomen, neck, and other places have loosened — places that didn’t even feel like they could loosen due to deep, rock hard constriction. I no longer feel like this is a fad “cure” that will go as fast as it came. It feels solid and reliable.

    I cannot thank you enough for your words. I love your straightforward and simple approach to helping us just getting started on this amazing road. Thank you from the bottom of my heart.

    Karyn

    • Hey Karyn,
      Glad to help! As you’ve read here, I had a similar results with the diet and am happy and healthy 7+ years on. Good luck!
      Bob

  • Dave

    Bob – I remember getting my AS diagnosis this past March 2014 – the feeling of sadness and yet the odd feeling of relief. It is funny/frustrating for me to think back to the two doctors who said to me while going down my diagnosis journey “just be happy you don’t have Ankylosing Spondylitis”! I remember thinking, have what? (side note: they never tested me for AS)… Some time later, I fortunately through my own research found a doctor with an amazing wellness center out of New Jersey (across the country) who would not treat me for what were assumed to be physical injuries (years of snowboarding, surfing, skateboarding and every other crazy activity we do growing up in Southern California) without having blood work done to see if it was potentially AS or another auto-immune disease. That doctor officially diagnosed me with AS. I am forever thankful for Dr Greenberg (in case anyone needs a doctor recommendation).

    Anyways, your story and others who have shared the same successes hit very close to home for me due to many of the struggles I have had dating back to 2009. My 5 year battle of finding a diagnosis was a struggle. Without getting too into the negatives that anyone visiting this site has already experienced for themselves, I have had nights of sleeping in chairs and on the floor, difficulty getting dressed and showering, troubles getting out and into the car, and the like.

    I write to you because I had thought that I had been doing an excellent job on the NSD diet that I found on a couple other sites (or at least how I understood the diet), but after the flare experienced this weekend and finding your blog this morning, I can assure you that your site breaks down the do’s and do nots better than any other site. I do wish I had found your site prior to what I just ate for breakfast, which I can assure you definitely won’t be helping reduce my pain haha.

    Anyways, you now have one new dedicated supporter and reader. Thanks for helping the AS community and keep up the good work. Getting by diet on track, I definitely won’t be missing these flares!

    Cheers (Non Starch Cocktails),
    Dave

    • Thanks, Dave. Glad you found this site helpful and sorry for my delayed response. One thing you may want to try the next time you get a flare is fasting. I am just recovering from a flare (due to a few too many “cheat” days) and I attribute a couple of quick fasting days to my quick recovery. After so many years on the diet I have it dialed in so that I know I can get back on track whenever I have the occasional flare. My remedy is just a day or two of fasting and then getting back to the strict NSD. Good luck!
      Bob

  • Tom

    Interesting discussion about diet. I have, over the twenty-eight years I have lived with Ankylosing Spondylitis, tried every variation on diet – and the results have always been, unfortunately, short-term relief. I might be a ‘Joker in the Pack’, however, as I also have Psoriatic Arthropathy (arthritis related to Psoriasis which I’ve had since I was 11) for a few years longer than A.S., just to keep things interesting.

    Irrespective of diet and/or pharmacology, the Golden Rule in A.S. is KEEP MOVING! Yes – I know it hurts; yes, I know you’re feeling shattered 24/7; yes, I know it’s easier to sit and wrap yourself in a warm blanket or have a hot water bottle permanently at your back – but if you don’t use it, you lose it has never been truer than with this condition.

    Over the decades, I have seen people come and go who either don’t take the condition seriously, or are so busy they neglect a daily exercise regime – it’s always a mistake. I fight minute-by-minute to keep a straight back and, although it is impossible to beat the muscular and skeletal forces that try to drive my head downwards and my spine leaning forward, I can at least hold it at bay.

    It is important to understand that there are varying conditions of A.S. and not everyone will be severely affected, whilst others can be quite debilitated by the disease. Whichever category you might fall into, the exercise and movement regime should be similarly rigorous.

    A.S. is a progressive disease. It is not going to miraculously go away, so don’t just ignore it.

    Bottom line: If you need NSAIDs (Non-Steroidal Anti-inflammatory Drugs) – TAKE THEM. A diet, or some other short-term measure might seem to help, but trust me, they are not a permanent solution. Way back in 1987 if someone had told me a diet would “cure” my A.S., I might have given it a go – but after almost 30 years I know that a diet is NOT a cure.

    The inflammatory response that causes A.S is not dietary – although certain dairy products etc. are generally not great for arthritic conditions. A.S is caused by a genetic marker: HLA-B27; it has absolutely NOTHING to do with what you eat.

    NSAIDs are the go-to drug for A.S., but they do affect the lining of your stomach (I am on Omeprazole to ease the discomfort caused by ulcers, due to taking an NSAID for 11 years without it being monitored properly in the first decade of my condition). Another form of treatment is a COX-2 Inhibitor (a different form of NSAID which targets the cyclooxygenase-2 enzyme which causes an inflammatory response and the accompanying pain).

    To reiterate: a dietary change is not sufficient for treating a genetic condition, despite what you might read. Every day there are banner headlines announcing “cures” that amount to nothing of the sort. Find a combination regime of exercise and medication and, if you like, modify your dietary intake of harmful products like sugary cakes, dairy products and tobacco and alcohol. The InterWeb is awash with such lists, but they are secondary to the right medicine and daily exercise.

    So: no magic wand to make A.S. disappear by changing your diet – your genes are your genes, and you cope with them in a rational and sensible way. You might just as well believe that the stars govern your fate – but that would be just as stupid.

    • SEAN – AKA “TreatMeGently”

      Tom

      I treat my AS with diet and supplements too. Over 20 years now!

      Your genes do not pre-determine disease they pre-dispose you to disease.

      There are two sciences related to this – Epigenetics (where your gut bacteria balance interact with with genome)

      Then there is Nutrogenomics where food can impact which genes are activated.

      This website did not claim that this NSD would cure all cases – it also mentions other options. Also in respect of PSA, your arthritis may have another underlying cause which could perhaps be bacterial or viral.

      PSA is heavily linked to Strep infection – and by infection I do not mean full infection I mean non-symptomatic.

      BTW – I got MUCH better after stopping NSAIDs

    • Kyle

      Hello,
      I can say with certainty that diet is not a temporary fix. However, the diet required for AS is extremely complex and rigid, and incredibly hard to stick to. Most foods we eat in modern times do not meet its requirements.
      Please, do more research into the NSD – meaning no starch whatsoever. Starch is put into almost everything packaged these days.
      I also take Apple Cider Vinegar every single day – 4 tbsp per day diluted in water throughout the day. This is a major contributor to my pain-free life! Please also visit a homeopathic doctor.

      • Kyle,
        Glad you’re pain free. But a person might as well go see a shaman or magician if they’re considering a homeopathic doctor. Homeopathy is quackery.

  • Jay

    You got me with “turd wrapped in a ribbon”. Took me a minute or so to stop laughing at the imagery. Cheers doc. So perfect. So poetic. I laughed a lot. My back hurts now.

  • John

    Bwhahaha. The turd part! hahahaha.