Kickas.org Forums Treatments, Drugs and Alternatives NSD and diet-related; No/Low Starch Diet Success Stories

I would love to see more diet logs of what u all eat. It would be very helpful to newbies

Anyone dealing with Candida and other pathogens too? Histamine intolerance? How Are u addressing these?

Hi Jeanne. I don't know if you're still on this site, but I'm curious: how did you confirm that candida was in your system? I think I MAY have it as well.

Hi,

I am suffering from AS since 2007. Nowadays lower back pain is killing me. I started Herbalife just a month back. Could you please tell me in detail - the products you are using and suggest / guide me.
Regards,
Debabrata

HI ALL,

I was recently diagnosed with AS and would love some support and advice from those of you that have been successful! I just did a one day fast and don't feel much better, but am optimistic that the NSD will work for me.

Just wondering- how many of you react to the "fringe" foods such as garlic, asparagus, almonds, etc?

Also, I recently bought about $100 worth of supplements, only to find that a few of them have little bits of Maltodextrin or rice flour. I am having the same problem with finding Stevia, as most Stevia has Dextrose or Inulins in them.

Just wondering, should I completely cut out these supplements, even if they didn't turn black with the Iodine test?? Some of them stayed a brownish red, so the amount must be very small. The only thing I can't cut out is my Thyroid medication, which I need, and does have a tiny bit of starch (but didn't turn all the way black).

Also, I had seen in one of the forums that Dexrose is okay and doesn't feed Kleb, and that you need some carbs in order to rebuild your stomach wall. I am guessing my best source of carbs will be fruit, all of which should be okay as long as I iodine test it first, right? Does anyone have experience with this?

Any help, encouragement, advice, hope and support is greatly appreciated. I haven't started meds and would like to avoid them but am in severe pain with Sacroiliitis. I seems that many have had results very quickly, so I am trying to stay optimistic!!

Thanks!
Mandy

OK here is my story - it is a fairly long one. I will have to amend it sometime now that I am in remission and can eat some starch again, as this is not yet mentioned.


About me
I live in Sydney 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.

My early signs.
At about the age of 11 or 12 I started getting regular tummy pains that were sharp and moderately severe, and was having to leave class fairly regularly. Fortunately these went away after several months. Even at a very young age my body was prone to inflammation, most notably rhinitis (inflammation of the lining inside the nose) and chronic asthma. I was hospitalised at least once as a child due to the severity of asthma attacks, and I had to take regular medication to keep it under control. Likewise, chronic rhinitis has caused my nose to be constantly stuffy and clogged since childhood, so much so that I was forced to breathe through my mouth unless I took medication.

I started showing some early symptoms of Ankylosing Spondylitis in my mid-teens. The first symptoms I recall were foot pains and some toes swelling up temporarily (doctor called them “sausage digits”). Then a year or so later came hip pains and some mild stiffness. In fact I received some bullying & nasty insults because of that. Soon I noticed that the hip pains would go away when I was playing soccer regularly, and then would return during periods of relative inactivity.

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 airs), 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. At this point I think I started to question the medical system’s ability to effectively treat autoimmune disorders. Eventually I reached a tipping point where I just couldn't tolerate the side effects of the drugs anymore and had to look for other alternatives.

The first clues on how to beat an immune disorder - root causes

Trials
It was my mother who mentioned people on some internet forum (kickas.org) and that they were using dietary measures 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). 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. It was around June of 2002 that 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 and fatigue, 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 cough took many months to fully resolve.

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. But what I had learned from all this is that some pathogen must be playing a part in our disease.

Molecular Mimicry
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?.



The pieces of the puzzle fall together

Getting a tummy flu
I ate something bad and came down with some pretty nasty food poisoning at the age of 24. 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.

I'm not a full success story quite yet but wanted to post my experience thus far with NSD.

I started tracking my flare ups in 2014 and they happen every ~25 days and I've had 8 flare ups thus far.

I've been on the diet for 7 weeks. I had a flare up 2 weeks into my diet but that is also because I was going through an iritis flare in the weeks prior. I think my leaky gut + Klebsiella levels were still abnormal.

Since then, I have had 31 days of no back inflammation. This is almost my 2nd longest duration of the year and I am hopeful it will continue past my longest (43 days). In addition to NSD, my naturopath put me on caprylic acid and grapefruit seed extract to eliminate some yeast that was detected through a stool test. Also, these 2 antimicrobials are strong against Klebsiella. I also started taking 12B probiotics every day a few weeks back to help add in good bacteria.

I believe the actions I have taken above are working to eliminate Klebsiella but probably more importantly leaky gut (I have posted previously how leaky gut is a precursor to A.S. at least in one study of it). I hope to get to a point where I have no back inflammation and no chronic iritis flare-ups.

Just a clarification above. I am taking a country life probiotics product that contains 12 billion organisms.

I've also had a few other lifestyle changes coinciding with my NSD diet - doing yoga a few times a week, using a standing desk for part of the day at work, and upping my EPA/DHA from 750 mg per day to 3000 mg per day.

I don't post a lot but I do check in regularly.

I am Keith Smith, 46 and a teacher in Sydney, Australia (although I am originally from the home of bread and potatoes, Newcastle, England).

This is a brief outline of my experiences of NSD.

2009 AS began to dominate my life.
December 2009 began NSD diet and immediate progress but not remission.
2010 experimented with antibiotics...reasonable progress.
2010 to 2012 good progress but still troubled by iritis and SI pain.
2012 gave up beer...no more iritis. Paleo auto-immune protocol (full on but beneficial).
2013 started LDN...steady improvement and by 2014 full remission.
2014 September...stopped taking LDN. No change. Still in remission.

The take home message is cut out beer, be patient, LDN helps take the edge off a hyper alert immune system and finally stick to NSD.

These days I am LSD...cooked greens (brussels etc...), lots of nuts, copious avocados, solid paleo foods, cider instead of beer but I haven't tried medium to high starch foods. I am a little reluctant for obvious reasons. In the longer term sweet potatoes and rice would be great but I am patient.

My regimen is lots of magnesium citrate, 5 TBS of Acacia Senegal (to feed my good bugs), Prescript Assist and I am experimenting with other probiotics. In the past I have reacted to sauerkraut but that is next on my list.

Every one is different but that is my story. If you are a non-believer swallow your pride, cut out the "good stuff" and embrace the paleo diet. If it doesn't work go paleo auto-immune. If that doesn't work try antibiotics. Failing that try LDN. But most importantly BE PATIENT. It takes time.

I am playing football, swimming, running and hoping to do a triathlon in the new year.

Happy NSD and a big thank you to people like Kiwi, John (Dragonslayer), Dotyisle, Louise (Inkyfingers) and other absolute heroes who run this site. Guys you are making a real difference to people's lives, especially mine!

Go KickAS!

Hi,

Im a new member here.. I was diagnosed in 2007 and have experienced thos sleepless nights due to pain. I took methotrexate and until now, it has been my only medicine together with folic acid of course to minimize adverse effects.

I have been pain free majority of the 7 years and have suffered from episodic flares that arcoxia can fix..

After reading the success stories here, im enfouraged to try this nsd thing as i no longer want to rely to any drugs as it cpuld lessen the symptoms but could affect other organs.. I dont want to go the biological route as well.. Anyone here who stopped biological treatment because the nsd worked?

Hi,

Fist, sorry by my english level,I am a spanish man of 33 age, I promise improve my level english, I was diagnosed two years ago and my pains are stronger on my feet, fist a fascitis plantar and in this moment I have pain in left foot big toe inflammation and intermittent finger right foot, heel pain and recently stiffness in the neck area. From day one I 've been trying a diet low in starch but I would like to know how resolveis your foot problems and if the diet helps you . Thank You