Let The Healing Begin!
2828/02/2012 by Farmer K's Kitchen
Above Image Credit
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.
Click: Image Credit
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.
A young man with Ankylosing Spondylitis...standing up straight!!
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’.
Click: Image Credit
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!!
So proud of you both,,,such an amazing couple!! There is nothing you guys can’t overcome together…and through prayer!!
So happy to hear things have improved in just 3 days!
xx
I know! An improvement so quickly! He played volleyball last night after feeling so wonderful these past few days, but I think he overdid it a bit as we had a very sore man limping around the house this morning. I think it was just the exercise though and he’ll be okay once he gets moving a bit more.
Man, how enlightening all of this is! Thank god that you are right on cue with Kirk and are determined to figure this out–what a blessing, Katrina. I’m excited to hear the improvement that happens with the new hippie diet
Much love to Kirk!
Thanks Cara! We were so excited to find all of this out – especially when the only other alternative he was given would be strong medication. Hoping the lack of starch keeps the AS at bay. Kirk says thanks too! xo
I LOVE what you are doing to beat AS! Your blog is wonderful!!! I have also started a Starch Free Blog full of Raw Food Goodies to combat my Ankylosing Spondylitis. Let’s take over the world together ♥ http://bettyrawker.com/
Thanks Betty Rakwer (love your blog name!). I was so excited to read your comment and check out your site as I am on the lookout for some great starch-free recipes. Thanks for finding me and introducing yourself! x
Hey! I just hit another break through on this No Starch Diet. Errh. I discovered that there is another food other than starch that those nasty little Klebsiella love to eat, and unfortuantely it’s something I love too = certain sweets! Make sure if anything you avoid Agave, which is like tossing gasoline on the Klebsiella fire. I learned the hardway. Do some googling of “fructooligosaccharides” and ankylosing spondylitis, it ain’t so pretty. I am trying to find the right balance for me, like I read there is some FOS in honey too, so I am just laying off sweets for a while, and will introduce honey again in a bit. And my case may be different than your husband’s, as I also suffer horrible IBS/Colitis from this disease, and have also suffered from Candida. Either way, though, watch out for FOS foods – Sorry to be the bearer of bad news!
http://www.breakingtheviciouscycle.info/knowledge_base/kb/inulin.htm
“Klebsiella live on the same carbs as Candida does and respond the same way to sugars. One large difference is Klebsiella really love fructooligosaccharides (FOS) which is quite often used as a substrate to encourage the establishment of friendly probiotic species in individuals that have trouble in forming a stable population of friendlies. While FOS will not encourage Candida to grow, it will act like gasoline on fire for Klebsiella. Hence for the 5% of the population that has a population of Klebsiella in their system, FOS is not a good choice for a substrate and one should try lactoferrin (if you are not allergic to dairy products) or arabinogalactans (which come from the larch tree)to perform the job of a substrate.”
Oh, and they tend to put fructooligosaccharides into probiotics (FOS is considered a “prebiotic”, which feeds both good and BAD bacteria), so watch out for added FOS in store bought probiotics too. I am just getting started with making the ultimate probiotic “Water Kefir”, and I am really really excited about it – here is a great link: http://waterkefirgrains.com/ This stuff sounds amazing!
Hi Betty
I can’t seem to comment on your latest information down below, so hopefully you get this if I type it here. Thank you for passing on that information!! We have gone from a pain scale of 8/10 before going starch three down to a 3 or 4/10 most days. We know it can go better, and the sweet stuff may just be the key! Willing to try anything. Thanks!
Hi Farmer K,
That’s really FANTASTIC for Mr Farmer K and only after 3 days. BOOM & BAM!
Came across a DVD in Woolies in the fruit and veg section called “Fat, Sick and Nearly Dead” (A Joe Cross film). You seen it? I thought you might be interested. A man who was extremely overweight, juiced his way to great health and weightloss & also cured himself of a rare autoimmune disease as well as met a man on the way suffering from the same disease and helped him. I only read the blurb. Have not seen the DVD. Maybe it might be interesting for you and Mr K?
xxo
Totes def boom! I have read about this DVD last week, but I have never seen it or realised you could get it at Woolies! How cool! I’ll have to keep my eye out for it as it sounds super interesting. Thanks Deb! x
Just watched it the other day – amazing!!!
Wow wow wow. My partner has AS so reading your husbands history was very interesting. We have dabbled in diet changes but never been really seriously committed to it. This is as much my fault as his
( But I feel motivated and inspired to make the effort to work with his AS instead of against it. So happy I found your blog (via Hot Pink Chillis).
Hi jleesye -thanks for your comment! We have also tried changing Kirk’s diet a few years ago when Kirk was first diagnosed, but it never really stuck because it was all so overwhelming. We cut out heaps in one hit – dairy, gluten, starch and sugars! Since we have been gluten-free and already cooking with coconut and almond flours, this time around it seems a little easier and not as much change. We are also still eating unrefined sugars (honey, pure maple, agave, xylitol, stevia, etc).
xox All the best to you and your hubby!
It has been over a week now since we have cut out starch and the improvement in his back has been remarkable. Kirk isn’t hobbling! He did however have some milk in his coffee and granola yesterday and had a little bit of a flair up. It just confirms though that milk does not agree with him at the moment. Cream and cheese seem to be ok (has something to do with the lactose).
I’d love to keep in touch with you! My email is katrina@vagg.org if you want to chat more or ask me any questions about the diet
[...] part of our starch-free regime to stop my husband’s Ankylosing Spondylitis from being mean, nasty and painful, we indulged in a bit of dessert for [...]
[...] of the difficulties I am finding with having to go starch-free and milk-free, is finding food that we can shove into our mouths quickly (and apparently taking good photos at [...]
[...] Our purpose is to nut-out which foods are possibly aggravating my husbands back pain (you can read about that here). I don’t have what he has but I figured I may as well jump on board with it as well. Things [...]
Kirk and Katrina, well done on the discipline needed to do this. I have tried many remedies to address the underlying disease, not just mask the symptoms like the NSAIDs do. Avoiding starch helped me for about 6 months, but my AS seemed to adapt to reduced intake and my disease progressed. I recently discovered lactoferrin which has made an amazing improvement! The best combination in controlling AS thus far (20 years and counting) is probiotics, lactoferrin (500 mg each morning) and glutimine.
Don’t give up!
David M (Calgary, Canada)
Hi David! Thanks for your comment and your encouragement! So far we have had a few flare ups thanks to us not testing for starch (cream cheese!), but as soon as he takes it out of his diet, the pain disappears. Thanks for your tips too on what you are taking. Take care, Katrina
[...] Let the Healing Begin for the story behind Kirk’s Ankylosing [...]
Hi Farmer K,
Thanks for your blog, I was diagnosed with AS only two weeks ago after 12 years of back pain. This flare up was by far the worst one yet moving from just lower back bain to my whole back, shoulders and chest. Right now I am in a qualifying period to see if I am suitable for the Humira or the like and find out in 6 weeks what that will be. Until then I just have the NSAIDs but not being very excited about being on drugs for the rest of my life either, being a busy mum of 4 young kids, I started searching for all the information I could find. I started NSD 4 days ago but have really struggled knowing what I can and can’t eat. Your recipes have just given me some hope that it wont be all boring food and that it is possible to stay eating this way long term. After 2 days I have just gone 2 days with no drugs (1st time in 8 weeks), still in pain but can handle it without the drugs. My hope is that by the 6 week mark when I fly back to Sydney to see my specialist I will have the pain under control with diet alone and I wont get the Humira pen. Praying for a miracle. THanks again for your recipes.
Hey Kym,
I am so glad you commented on here and got in contact. I am sorry to hear about your pain and diagnosis, and I am praying that you find major relief in the No Starch Diet. I just want to encourage you to stick to the NSD – so worth it….and it does get easier – promise!!
I highly recommend you go ask the chemist for some Iodine Tincture and a dropper if you haven’t done so already. It cost us about $9. You can then test everything for starch (if it has starch in the food, the iodine will turn black). Testing apples (some have gone black with starch others have been fine) is really important each time you eat them.
It was really quite overwhelming at first, but once you get the hang of what alternatives you can have (baking with almond flour has been HUGE for us), you soon realise that the types of foods are more delicious and satisfying that the old ways of eating
If you want to flick me an email (katrina@vagg.org) I can forward on some food blogs that have mostly starch-free recipes. Also, please email me if you have any questions or want to have a chat! – Katrina xx
Hi Katrina,
Amazing bolg, love it. I am also from Australia and was diagnosed with AS about 4 years ago. I have been on the NSD for 3 years and have had great results. I do have flares from time to time and when I stop and start looking tfor the cause I usually come up with a food I thought was safe.
Thanks to reading through your blogs I’m about to go and test the philladelphia cheese that I think may be the culprit of my latest flare.
I’m thinking of putting together some recipies that have been good to me over the years on he NSD. Will let you know when it’s done.
Good luck with everything
Antoniette
[...] come across in an incredible cookbook: The Gluten-Free Almond Flour Cookbook (if you suffer from AS or gluten-sensitivity, this is a fantastic recipe book for you!!). After making these pancakes the [...]
Hi Katrina,
Congratulation on the amazing blog! Your hubby is sooo lucky to have such a loving and dedicated partner!
I’m from Romania and I was diagnosed with AS, 2 years ago, at the age of 30. I had been previously struggling with IBS for 20 years. The doctors are trying to push the biologics treatment on to me but I am really scared of the multitude of side effects these drugs come with, so I’m still sticking with my 2gr /day of Sulfasalazine.
I am curious how your hubby has been doing on the NSD for the past 4-5 months? Is it really working or has he gone back to biologics?
Keep up the amazing blog as it reaches far around the world, giving hope and uniting people from all over
Alina.
Hey Alina,
Blessings to you in Romania from Australia – wow you are a long way away
Thank you so much for your encouragement and kind words. I am so happy that you have gotten in touch with me!
Kirk is still on the NSD and has not experienced one ounce of AS pain since he started (except for the time he decided to experiment with hot chips and paid for it later with BAD AS pain! He didn’t want to experiment any more!). Eating NSD has changed our lives, especially his.
We have found it relatively easy to change our eating habits and eat NSD. My saviour ingredient in a lot of my cooking has been almond flour / almond meal (same thing). We use it instead of flour and there are so many incredible recipes on the internet. I can recommend Elana’s Pantry for baking and pastries (just steer clear of arrowroot or other flours she uses sometimes).
The scariest part of eating NSD was definitely the mind-set of not being able to eat old favourites anymore, but we now just substitute ingredients for NSD friendly ones or find alternatives (cauliflower instead of potato…believe me!). That has been awesome and we can still eat our old favs!
The hardest part is eating out as most dishes have a starch component like potatoes, rice, bread. We usually ask for something to be left off, a substitution (avocado instead of croutons), or you can always find at least one meal that is starch-free. Once you know your starches, it is easy-peasy and you know what to look for. We whip out the Iodine dropper at the cafe or restaurant to test sauces (we ask for on the side just in case). If the test goes black it has starch in it (Iodine from the chemist is about $8 in Australia).
I think the best start for Kirk was having the juice and smoothie reboot (under K’s Reboot at the top of my blog) as it really cleaned him out of starch and started the healing in his back. It showed him in a short amount of time how much food has affected his back, so he has been very keen to stick to NSD. For Kirk, eating the old way is not worth the pain.
When Kirk was taking Sulfasalazine he continually got mouth ulcers. I know the drugs effect everyone differently.
If you have any questions, please email me: katrina@vagg.org cause I would love to hear from you and what you decide to do!
Love Katrina x
Hi!
I dont have AS, but I have UC and was diagnosed with 3+ Klebsi pneumoniae via a stool test. Have u tried to kill off the Klebsi with Caprylic Acid? This is the one natural antibacterial agent that can kill off KP.
There is no set protocol, but it seems like most people take 500-1000mg caps 2-3 times a day (work up to that dose) for approx 2-4 weeks. U take probiotics during that time, bc caprylic can kill off some good bacteria too. After the 2-4weeks, take high dose probiotics and reassess how things are. U may need to repeat this cycle, for Klebsi is a tough bugger to beat. But high dose probiotics are important (many people use VSL#3).
There is also new research that animo acids can help break apart the biofilm, so an amino acid supplement may be a good addition, as well.
Also, i agree that starches should not be consumed, but legumes are a different story. They contain Resistant Starch (and prebiotics), which will help the gut flora issue tremendously. The good flora feed off of Resistant Starches found in legumes (and also rice/oat bran, but u can get enough from legumes). If u dont feed the good flora, the bad flora will always overpower your system.
It is best to soak/sprout or ferment your legumes, as this will break down the starch, increase the protein, reduce antinutrients and acidity, and introduce some good bacteria into the gut.
Start slow, because your body needs to acclimate to the beans by building up the right type of good flora in order to digest the beans better. Begin with like 1TB a day for a few days then work up to tolerance. Aduki, Anasazi, Mung, heirloom beans, peas, and lentils seem to be the easiest to tolerate
Also, load up on fruits and veggies…these contain loads of prebiotics too
I am so happy I found your blog. Thanks for posting your story. My husband has a similar story. He was diagnosed with AS about 6 months ago. We found out he was allergic to gluten, egg and soy and cut those out immediately, but he still hasn’t had relief in pain so we’re not looking for a NSD. We’re looking for recipes so please keep up the great work.