You can call me Zark, I live in Australia, am in my mid 30’s, and work in IT. I kind of fell into this career as it was the easiest for me, you see my family has been in the computer business for as long as I can remember. Even at the age of 13 I was assembling and fixing computers we had imported in order to sell them to a chain of large retail stores. I loved working with my family and it wasn’t really a chore for me, I liked being around my parents and I think it brought us closer together, I got some extra pocket money, and I found it stimulating and challenging.
I started showing some early symptoms of disease in my mid-teens when I started to have foot pains, and then later came hip pains. I soon noticed that the hip pains would go away when I was playing soccer regularly, and then would return during periods of inactivity. Even at a very young age my body was prone to inflammation, most notably rhinitis and chronic asthma. I was hospitalised at least once due to the severity of asthma attacks, and my nose was constantly stuffy and clogged up.
The first clues on how to beat an immune disorder (learning about root causes)
My early signs
I started to notice some issues in my teen years - mainly stiffness and some hip pain. In my very late teens I had a severe iritis attack (the first of many). The ophthalmologist asked about hip or back pain, mentioned that iritis is associated with AS and had me referred to a rheumatologist. Then came the gene test, x-rays, salazopyrin, NSAIDs (Non-Steroidal Anti-Inflammatory Drugs), etc. Things were fine for a few years and the NSAIDs kept me mobile and I seemed quite normal.
Yes, I am fairly sure the NSAIDs have permanently damaged my health. After about 5 to 7 years of using them I started to have weird reactions such as tinnitus (ringing in the ears), confusion, and symptoms similar to Sjögren's syndrome (dry mouth and eyes). The longer I used the medication the less effective it became, and yet the side effects gradually continued to get worse and worse. Eventually I reached a tipping point where I just couldn't tolerate the side effects anymore and had to look for other alternatives.
It was my mother who mentioned people on some internet forum (kickas.org) and they were using diet to manage symptoms. I would have been between the ages of about 17 to 19 at that time and I "knew" for certain they were fools, after all how could diet have anything to do with it..? Well, I could have saved myself a lot of trouble if I hadn't been so arrogant (the saying "pride goes before a fall" comes to mind). Well, that youthful arrogance has cost me a great deal.
As the disease progressed, the pain gradually became more and more intense. When possible I would try to do warm up exercises and stretches to help get the joints mobile, as that definitely helped with the inflammation. Given that the pain and inflammation would go up and down quite a bit, it was sometimes very difficult to do any form of exercise at all, and very difficult to keep a regular daily rhythm going.
It gradually became more and more difficult to walk, getting up out of a chair was an ordeal in and of itself, but once I got up and was mobile the inflammation and pain would typically reduce to a more manageable level. Even a small period of inactivity, such as 30 minutes, would be enough for the inflammation to set in and immobilise me. This made sleeping more difficult, and trying to get out of bed in the morning was an excruciating ordeal. I often needed assistance getting out of bed as the pain was so bad. Every time I coughed, laughed or sneezed I would be hit by searing intense sharp pains in my rib cage. It was like being stabbed with a knife.
I was in so much pain at one time in my life that I even considered that ending my life would be preferable to what life had in stall for me. Years of suffering that would only get worse and worse, and still worse, and I knew that eventually my body would become completely rigid such that I would need to be confined to a bed or a wheelchair. Surprisingly it wasn't the pain that caused the greatest despair - rather it was the loss of all hope for the future.
I find it curious that although it was my mother who had long ago mentioned the kickas.org website, where people use diet as a means to control disease, years later when I started to actually follow the diet she became very upset and even cried. Later my family could see the obvious improvements in my condition, even my sister who is a medical doctor said to me "the medical system has failed you" (because dietary changes had worked where drugs had failed).
The first clue - antibiotics
Bear with me on this one, it will become relevant later on. In my mid 20's I was preparing for a trip to Malaysia and Singapore. I visited my local doctor in Kingsford and asked if there were any vaccinations that I would require before going. She recommended two vaccinations: one, an attenuated Typhoid vaccination, the other a Hep A or B vaccine (I forget which). Well, the attenuated vaccine I would later learn contains a live but weakened version of the Typhoid pathogen. A normal immune system probably would have had no trouble with it, however I came down with a cough within days of taking the vaccine. Being irresponsible and not realising it was anything more than a little bit of flu I went to Malaysia - despite the cough. However the cough didn't go away and continued to get worse and worse. Soon I started to develop a mild fever and a feeling of tiredness, then later came the red spots on my chest which are a classic sign of Typhoid. My friends took me to see a doctor and he prescribed an antibiotic and some cough syrup.
Now here is the interesting thing - not only did the antibiotic stop the cough for the duration of the treatment, but my inflammation went away altogether! Now, as soon as the antibiotic course was ended I found my inflammation came right back. Dangnammit. Such a strange thing to happen, and why did the antibiotic have this effect? Well, I find it does fit well with the "Molecular Mimicry" theory I read on kickas.org. Oh, and not only did the inflammation return, but so did my cough unfortunately and that problem took many months to resolve.
Typhoid is a tough little critter, but not nearly as tough as whatever bug must be contributing to our AS. Whatever it is, the microbe is everywhere and going by research performed on rodents, it appears to live in them too. There is a rodent model for AS by the way, and sterile rodents do not show symptoms of inflammation until they are allowed to interact with normal rodents, i.e. exposure to normal microbial flora brings on inflammation. Klebsiella have the same or similar antigens on their cell surface as do those with the HLAB27 gene, and according to the "Molecular Mimicry" theory of autoimmune disease it is this similarity that causes the immune system to become confused and start attacking you in error.
The curious thing about the rodent model is that they need to insert the HLAB27 gene around a thousand times or so in order to get a decent inflammatory response. A single copy of the gene and inflammation from any cross-reaction with microbes such as Klebsiella is obviously easily modulated by a normal health body, which indicates to me that something more than molecular mimicry is going on. Some other system has failed also, and the question is what?.
When I returned home from my trip I explained to my doctor what happened. Fortunately my doctor at the time trusted me, and allowed me to try the antibiotic again. Unfortunately it didn't do a thing the second time round. The critter had adapted.
The pieces of the puzzle fall together
Getting a tummy flu
I ate something bad and came down with food poisoning once some years back. I wasn't keeping solid food down so I decided I would try fasting - more of my usual crazy, self-experimenting behaviour. I just wanted to know what a fast would feel like, as I had heard that certain spiritual people do it and wanted to understand why. I did drink water of course, I'm not suicidal. After hours of diarrhoea and vomiting there was eventually nothing more in my system. My gut was empty. I recall quite clearly vomiting one final time until there was nothing left and then within just minutes of clearing everything out the pain started dissolving away - it was surprisingly fast! I continued the fast for a while before eating and I have to say it was a wonderful experience. I think that the fact my digestive system was completely cleared out is what made the fast so enjoyable. I was happy, creative, my mind & body felt bright and effortless, had no hunger pains (drank plenty of water though!) Life like this was really a joy.
Obviously this was not going to be a long term solution though, and as soon as I started eating again the pain started to come back in a matter of hours. That was when the penny dropped and I realised something in my diet was causing me pain. I hopped on an internet forum (kickas.org) and mentioned this experience to others also suffering from my condition. To this "DragonSlayer" responded and pointed out that my experience illustrated the purpose behind the No Starch Diet (NSD) that he follows. He pointed me towards the appropriate sub-forum where the diet is discussed. Well, up until that time I had carefully avoided the "loonies" on that part of kickas.org. If only I had listened when I was younger instead of being so arrogant and closed minded.
So to sum all that up, I now knew beyond a shadow of a doubt that something in my diet was causing my inflammation and returning to my usual eating patterns brought back the pain. Hope returned, now it didn't matter how much pain I was in, I had something to fight for.
More of my story
Remission after eating Natto - I can tolerate starch again!
NSD Book Chapter - I have been working on this book chapter for Andrea that outlines my story, the diet I follow, a few recipes, and some other health info.
Experimenting with Amylopectin starch