28/02/2012 by Farmer K's Kitchen
Stop and read the background story of my husbands Ankylosing Spondylitis (AS, pronounced “ank-kih-low-sing spon-dill-eye-tiss”) HERE. It will give you all the history behind his journey with AS, which will then lead you up to this moment.
Since Kirk and I have become hippies (as our way of healthy eating has been called many times), or should I say, dramatically changed the way we eat for the better, we both feel amazing! Energy, weight loss, cleared skin, happy, alert, etc – give me the hippie life any day All this is great and awesome and fantastic, BUT there is one major area that seems to be persisting through it all and we are determined to fix it through food – Kirk’s back pain! This is not just your everyday sore back – this is potentially the Hunchback of Notre Dame kind of stuff, or placing him in a wheelchair.
Kirk was diagnosed with the autoimmune disease Ankylosing Spondylitis, over 7 years ago. AS is a chronic disease that affects his spine, eyes and mobility. His back cartilage is badly inflamed and the soft cartilage is trying to turn into solid bone. Ouch! See this photo on the right? This young boy has AS and his back is permanently fused like this. Some people with AS have to use a mirror to see where they are going as they can not straighten or lift their head. We do NOT want to have to head down that path.
To continue from the previous post, Kirk has been off the drug Humira for nearly 2 years now. Unfortunately, his AS (Ankylosing Spondylitis) has slowly and sneakily crept back. He has been getting quite a few outbreaks of pain where he has been losing a lot of sleep and mobility. The worst pain is always in the morning, but sometimes it lasts all day long and he has been finding it difficult to sit or stand. It is always so heart-breaking to see him in so much pain. The flare-ups vary in intensity. One day he can hardly walk, the next he can play a game of volleyball. He can’t tell which way it will go and he has to just play his day by ear. He puts up with a lot and will spend a lot of his morning trying to stretch and move his body so he can go to work and teach his class. A lot of the time he looks like he is coping and there is nothing wrong, but when I ask him how his back pain is going he will reply with “agony!”. He has learnt to cover it very well.
In my old post I mentioned that it looks like Kirk will have to go back on the drug, Humira for the pain and “wear and tear” of his spine. Well, since our health journey and after doing tons and stacks of research on how food is medicine for your body, we both decided that we didn’t want him to be back on those fortnightly drug injections. We are not against medicine – however, we would like to try to solve his AS problems with food and control it ourselves. Humira doesn’t stop the progression of the disease, it just stops the pain for a while. Kirk doesn’t want to be on drugs all his life and that is what he would have to do to keep the pain at bay. There is no cure for AS.
We know the Humira has been successful in the past, but it is only masking the damage to his spine and we know of people who do not find the drug affective anymore. Their body has adjusted and they have now had to go on stronger medicine with some very scary side effects – intestinal bleeding anyone? Turning your bones to wet-soaked-chipboard strength? I don’t think so!
Kirk and I spent an entire weekend scouring the internet for answers. Most doctors say food has nothing to do with sickness (I know, crazy huh!), but we expected that. Have you seen the movies: Food Matters or The Beautiful Truth? Explains a lot.
We kept persisting through all those suggestions of going on medication that doesn’t really work, until we came across a few articles that stood out. We checked out KickAS.org first. This is a website full of AS information and has a community of over 8,000 members going through similar hurdles as Kirk. We immediately downloaded the eBook ‘The Sinclair Diet: Eliminate IBS Pain’ by Carol Sinclair, which was recommended by many who have managed to beat AS pain through diet. Before you ask why we are reading a book about Irritable Bowel Syndrome (IBS) you must understand that Ankylosing Spondylitis does not just affect the spine. It can affect so many other organs in the body including the heart (scary), the bowels, eyes, lungs, joints, etc – all linked to the immune system and it depends on the individual. AS effects Kirk’s spine and his eyes, resulting in iritis which can lead to blindness. The author of this book, Carol Sinclair, has IBS and AS – both which can be caused by one another and can be healed the same way. She has managed to control both through her many years of research and following her diet.
One of the big things for us was to discover that AS is linked to a gut bacteria called Klebsiella pneumoniae, which feeds on STARCH! When this bacteria gets its starchy meal from potatoes, rice, flour, bread, pasta, it causes inflammation and pain. Naughty little bacteria bug! The immune system freaks out because there is so much Klebsiella bacteria in the gut (because there is so much starch for Klebsiella to thrive on), therefore the immune system attacks the bacteria. Awesomely good stuff! Only problem is that the AS gene that Kirk and all AS sufferers have (HLA-B27) looks like Klebsiella to the immune system, so it attacks that too. In a nutshell, his body is attacking his body!
It was always known that AS is a ‘reactive’ condition; that is, that the disease is triggered by something – it reacts to some environmental or biological trigger. But what it reacts to, no one knew.
Genetic scientists had discovered that many reactive conditions are autoimmune. This means that for some mysterious reason, the body’s immune system reacts against itself. This is exactly the opposite of what the immune system is supposed to do. Our immune system is like a defensive army within our body, ready to do war with the bacteria and viruses which invade us to cause illness. We don’t think of these invaders as other life forms, but in fact, they are. Without our immune system we would be taken over by these ‘body snatchers’. Our immune system is constantly on the look-out; it knows what all the destructive bacteria and viruses look like and has been trained to send out warriors (antibodies) to destroy these invaders as soon as they enter our bodies.
Unfortunately, sometimes the invaders can look the same as the body’s own genes. When this happens, the body inadvertently begins to destroy its own cells.
When it was discovered that over 96 per cent of patients with AS also had the HLA-B27 gene (which Kirk has been positively tested for), researchers had their first clue. And in 1975, when Professor Ebringer and his team found that these patients also had antibodies to a common bacterium, Klebsiella pneumoniae, which mimics the HLA-B27 gene, they were well on the way to solving the puzzle. As the immune system attempted to destroy the klebsiella, it was also destroying the B27 cells of the body, causing the painful inflammatory progress of AS. (The Sinclair Diet: Eliminate IBS Pain, pg. 16 & 17).
Although starches likely are the best food source for Klebsiella pneumoniae, there is no doubt that this bacteria species has the ability to take up residence within bowel tissues and survive with extremely reduced food supply—waiting. Once the opportunity for multiplication is presented by the ingestion of starch, the bacteria quickly multiply and are carried along in the digesting food into intestinal lesions, for example, where they can most easily enter the bloodstream and cause production of IgA, which results in Ankylosing Spondylitis. (KickAS.org)
This is pretty awesome information. Most people with AS do not know this link as doctors are not recommending a diet change…they are recommending medication.
The diet is starch-free and mostly dairy-free (the lactose in milk reacts the same way as starch). It all depends on how much of these two things your body can handle. So, for now we are testing this out. No starch, no milk, limited other dairy products. He doesn’t have to stay refined sugar-free as sugar is not starchy, but he still doesn’t want to touch the stuff! Previously we have already made steps towards this type of eating by eliminating all the obvious starchy foods such as flour, cakes, bread, pasta and potatoes when we decided to go gluten-free/’hippie’.
There are, however, a few other changes we need to make as being gluten-free does not mean you are starch-free. This change includes eating no quinoa (starch), bananas (starch), cashews and some other nut types (starch), beans and legumes (high in protein but very high in starch), even some vegetables release starch once cooked, but are fine to eat raw. There is so much for us to learn and I am trying to get my head around new recipes that will fit into this new criteria. I have enjoyed flicking through Caitlin’s blog, ‘The Roost’. We have a similar story.
Kirk and I are up for the challenge and excited to see the changes that are to come! I will keep you updated on how it goes, and post some simple, starch-free recipes along the way.
Already, in only 3 days of going starch-free, Kirk is noticing a huge improvement in his flexibility and pain. This is fantastic news and we feel like we are getting somewhere!!