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

Hello
I have suffered from AS for a good 20 years and always thought the pain was a result of the hard work I do ,I figured I had damaged my neck and back.
I was at the point were i was takeing up to 12 Ibprofen + 12 asprin a day and it was only dulling the pain , I also had use sleeping pills to sleep .
The pain progressed and a freind suggested I see a chiropracter . That helped and gave me great temp. releif . It was not unheard of for me to just roll out of bed onto the floor , It was easyer to get up from the floor . at times my wife had to help with my shoes and socks .
Then the morning came that I could not move , the pain was unbearable . With the help of my wife I made it to sitting , I then got to my feet and walked to the end of the bed and had to stop and sit down . I was Done ! I made it down to the chiropracter and at that point was diagnosed with AS . I then needed to eduacte myself on what could/couldnt be done .
I stumbled onto this site and the NSD diet , I have been on the diet for about 4 months and am still modifying it to fit me . I am estimating I have acheived a 80% reduction in pain and now only need to take something for pain an average of 3 times a week instead of 3-4 times a day !

Thanks
Jim

Thank you for compiling the list of people who are doing the Low/no starch diet.

I haven't been here for some time. I've had a great deal of success with the no starch diet. I thought I would tell my story in the hopes that someone who may now be going through what I went through can see some hope instead of pain.

About 6 years ago I started showing some symptoms of the disease. I noticed that I wasn't recovering quickly from sports related injuries. I was in my late twenties and I thought it must be aging. I had incredible pain in my feet, in my heels and the balls of me feet. I was in the army and I thought I was going to have to quit because I couldn't march. The pain subsided and I continued my athletic life. The next year I developed incredible leg cramps and shin splints. They were so bad one day I almost couldn't walk home from my run. The shin splints refused to go away; they resisted stretching, medication and rehab. I used to be a runner and now I couldn't run for the bus without feeling pain. I had to quit most sports including downhill mountain biking. I continued to travel, rock climb, and ride my bicycle. I limited the distance I would walk, the steepness of the hill I would ride my bike on and I wouldn't run. Rock climbing seemed to be OK because I was using my arms and I could play hockey once a week (instead of 3). The pain in my feet returned along with cramps in my legs. Then I developed incredible pain in my elbows. I was previously able to support all my body weight with one arm without breaking a sweat, I doubled the grip strength requirements for the military, if I could get my fingers on something (like a door frame) I could pull myself up and over with ease. Suddenly I couldn't hang from my arms or take a slap shot in hockey. I couldn't even pick up my kindergarten students without pain in my arms (I'm a teacher now).

I was terribly confused. I was healthy and athletic, but everything I was good at, every strength was being stolen. There seemed to be no reason, the doctors had no clue. I refused to stop living a healthy life. I continued to commute on my bike.

I once trudged 65 KM through the Canadian shield in two easy days, hiked uphill 8 hours just so I could get one fresh run through pristine snow on my snowboard, took my bike on 5 hour rides through mountain single track just because it was so damned fun. Now I was relegated to flat pavement and short trips. One day on a simple easy little ride on pavement 2 hours from home I noticed something very strange. To this day I can't explain the overwhelming feeling of dread. I felt some pain un my knees, but worse than the pain was the incredible fear I suddenly felt about being 2 hours from my house. I was in the middle of the city, on flat ground with the greatest invention ever beneath my seat. My steed, my mountain bike and I was terrified. I rode home as slowly as I could and attempted to go to sleep.

I woke up the next morning in incredible pain. My hands hurt in very specific places, my knees where swollen and very painful to touch, my feet ached, every old injury seemed to be screaming at me. My head was foggy like I had been drinking, I felt a little dizzy. I had such a hard time getting out of bed, even my warm shower hurt my knees. The warm water seemed to increase the inflammation. I hobbled to work and I could barely walk up the flight of stairs.

I dreaded going out, I dreaded waking up, I dreaded sitting at home alone with my active past floating through my head, tormenting me with every thing I had suddenly lost. I dreaded Saturday the most. What was once my day of action and adventure, was now my day of depression and T.V.

My girlfriend broke up with me because she said I was too negative....Girlfriend number two gone while every sport I loved was being stolen by some unseen menace. My life felt like Hell.

I secretly wished I had cancer so they could cut one of my legs off and I could go on living my life. I could ski with a prosthetic, but as it was I couldn't do anything, shopping was frightening. No one had any sympathy, they would say horrible things like 'You're getting old, live with it' 'It could be worse, it could be cancer' 'Hey, your not dying'.

I wished I would die. I couldn't imagine a life like this. I saw James Brown live in concert the year before he died and he looked so much healthier than I. I struggled to stand and watch him perform. He was 73 and I was 32.

I finally got diagnosed with AS. It turns out I don't have the genetic marker, but my cousin suffers from Rheumatoid Arthritis. My Doctors told me to rest, I bought a motorcycle to replace my bicycle. I had to pull my leg over the seat with my arm and balancing my little 125cc bike at red lights really hurt. They tried various meds until they finally tried Celebrex, Dmards and steroids. I was never happy with the results. I wanted to ski again, but my Doctor just kept telling me that I had a disease and I should accept it. There is no cure he told me, this is the best we have for you. I was furious.

I finally found someone who claimed he cured himself with a non starch diet and he recommended I visit this site. I cut out all starch, all sugar, and limited coffee and alcohol. I ate mostly raw vegetables (lots of them), egg whites, tuna, pork or chicken. I lost a lot of weight (which I honestly didn't need to do). Within a month I no longer had any aches in my hands. I was absolutely religious about the diet and within 4 months I was able to return skiing. The first day I had some pain and I worried that because of the damage done to my joints I would always have some pain. By the fourth time I went skiing I was 100% pain free and skiing on groomed runs at my top speed and intensity. My bike is now fixed up and ready for spring and I have plans to start riding. I'm trying to take it one step at a time, trying to ease back into sports. I hope to be able to return to a complete active lifestyle, complete with treks in Nepal, mountain biking downhill, touring on my motorcycle, and back country skiing. I'm not sure I will take up running again, we'll see.

The diet is free, no meds to buy, no doctor to see and I feel healthier than ever. I suddenly have my life returned to me and I can't express how happy I feel. I suddenly have a future again.....I now rip past those people who told me I was getting old. Don’t' accept this disease and don't accept the comments of any doctor who tells you to accept it. Growl at it and starve the [**BLEEP**] out of it.

Thanks to all the people at Kick AS who gave me advice and let me know they understood my pain. I really needed it, it saved my life. I hope anyone who needs advice from me now will send me a message. There is far more hope available than what doctors can prescribe. Kick AS!

Continued,

Well it has been some time since I wrote my triumphant success story. Initially I had great success with the diet. If I fell off the diet, the symptoms would usually re-appear. I feel that the diet helped me get better results than only the medication. I cut down the medication dramatically and have actually cut it out all together. I still keep some around for days when I may have eaten too much starch or done too much. I have stalled somewhat and I haven't returned to the level of activity that I had hoped. I have actually started eating starch again. I felt like I was starving myself. I still eat low starch, along with more vegetables, less refined sugar, limited alcohol and reduced acids (I keep antacids around too). I can't seem to shake some of the long term damage caused by the disease and from time to time (very rarely) I suffer from some minor inflammation. I'm still working on getting better and I still feel as if I'm improving. I find some starch is better than others. Starches mixed with rich or oily foods seem to cause the most problems, plain starch (brown rice) seems to be the best.

I'm even going to acupuncture (including the injection of bee's venom) which seems to be reducing some of the aches in my body (I still have persistent morning stiffness and aches that the low starch diet didn't seem to have much effect on).

I'm guilty of the infraction Tim described in his first post to this thread - discovered the NSD, it worked, so stopped coming here for help. However I felt an obligation to come back and share my experience in the hope that it may help and inspire others.

I was diagnosed with seronegative spondyloarthropathy in the summer of 2004 at the age of 44. My symptoms were comparatively mild - lower back stiffness and pain in the hips, especially when seated too long. My doctor prescribed various NSAIDs, and I eventually settled on diclofenac. For the first half a year, I thought things were pretty well under control, since I could feel fairly good after taking 50 to 100 mg of diclofenac. The routine was that I would take some medication, feel decent for a day, maybe two, then the pain and stiffness would return to the point where I felt I needed to take more pills. During this time I also read a lot on the web about this disease and its treatment, and learned that chronic use of NSAIDs was likely to lead to bleeding ulcers and other problems. Somewhere along the way, I came across KickAS and the no-starch diet. I consider myself a logical, scientific person, not some new-age health-food holistic-healing nut, and scoffed at the notion that a diet could help an auto-immune arthritis. I disregarded the NSD and went back to reading more “scholarly” articles about AS on the web.

Over the next half a year, my symptoms gradually worsened. My hip pain was now chronic, causing pain with each step. I could feel stiffness creeping into my neck and shoulders. Back stiffness was quite pronounced. I had to stand frequently during the day at work to alleviate the pain from sitting. I began to get depressed wondering what I would be like in 5, 10, 20 years.

Within a month of my diagnosis, I began daily charting of my pain levels, medications, exercise habits, anything I could think of that may have had an effect on how I felt. Typically I took diclofenac every day or every other day.

I eventually wandered back to KickAS and the NSD forum and started reading posts. It was such a radical diet, especially since I existed on breads, pasta and cereal, that it took a couple months to convince myself to try it. I gave it a casual one-week shot and proclaimed that it didn't work, not actually sure that I wanted it to since I couldn't imagine giving up all those wonderful, starchy foods.

Another few months passed with continual worsening of my symptoms. I did more reading of NSD posts on this forum, including some of the scientific theory behind it: Klebsiella in my gut feed on the undigested starches. My immune system is confused between klebsiella and my own body's cells due to molecular mimicry. Starve out the klebs via the NSD and the pain and inflammation decreases.

I went back through my year of pain charts and looked at the time that I went the longest without drugs - 6 days - and read in my notes that during that time I'd suffered from a nasty stomach flu that effectively purged my GI tract and prevented me from eating much of anything for several days. But my joints actually felt pretty good. Hmmm, maybe there WAS a connection between the gut and pain...

By now I decided that I needed to give the NSD a real chance. It was September of 2005. I promised myself I would be serious about it for at least 3 months. I would proclaim it successful if I could cut my NSAID use to once a week. I went strict NSD from the beginning. I kept eliminating more and more things from my diet, but still had enough pain to warrant diclofenac every few days. After a month and a half, I eventually hit upon the right combination. I went for a full 2 months without any NSAIDs and felt really pretty good! It was time for some negative reinforcement to prove to myself that this crazy diet was working. A lunchtime trip to the Olive Garden with coworkers for pasta and breadsticks gave me that opportunity. Two days later the pain forced me back on NSAIDs. I've been NSD ever since, for over two years now.

I still keep daily charts of my pain levels, exercise, medications, and now diet. There have been several times when I experienced a return of significant pain and thought the diet wasn't working, only to discover that starch had crept into my diet unknowingly (iodine is a must!) It is a difficult diet to follow and requires a lot of self-discipline. There have been many times when I felt sorry for myself for being deprived of some wonderful foods. I get over my self-pity pretty quickly, though, when I remember that I'm able keep this disease in check. I no longer have chronic pain when I walk. I rarely have to stand during the day anymore to alleviate pain from sitting. My lower back is pretty good in the morning and I can actually bend over the sink to wash my face. I haven't felt any neck or shoulder stiffness in months. I'm not pain-free, but it's very tolerable. I still take diclofenac on occasion, but now measure the time between doses in weeks or months.

Give the NSD an honest try. I’m thankful I did.

Jeanette

Hi everybody!

I haven't written my story earlier as I was planning to do that only when I was totally OK again. Well, now I realize that it would be silly to wait until that as my story is a great success already.

My name is Kaisa and I'm 27 years old. I will start from the beginning as I think that explains a lot..

When I was was 14 years old I went vegetarian and never felt healthy again. I had constant stomach ache and all sorts of IBS symptoms for years and years (that time I could not think it was to do with me being vegetarian). In age of 20 I
had a reactive arthiritis for a year on my right leg joints.
And in age of 23 had great SI pain for a few months. Both times walking was really difficult.

And in age of 25 everything just collapsed. AS came suddenly and was very severe. All my big joints were inflammated, I could not walk (basicly stayed in bed for 5 months)or wash my hair etc. And I was told I made it all up because I was so stressed up prior to all this! Finally they agreed to take some blood tests and found out my inflammation markers were really high. They said I probably have RA and put me on methotrexate, oxiklorin, sulfasalazin, NSAIDs and cortisone.

I’ve studied complementary medicine myself and felt really bad about those drugs. I just thought I had no other option. Well, cortisone naturally helped but also gave me osteopenia. Other drugs just caused nausea and other side effects. Only sz had some good effects, but still I was feeling really bad.

I got AS diagnosis when I was 26, found Kickas a few months later and started the diet the day I found it (October 2006). I already then had limited diet due to IBS: I ate no dairy, fruit, rye or wheat. So I needed to cut off mainly rice and starchy vegetables. The morning stiffness vanished right away but it took about a month before I saw any effect in my pain levels.

I needed to be very strict then (and still do), I couldn’t have even the tiniest amount of starch. I felt pretty good for a few months but then I got quite sick with other kind of symptoms: constant fatigue, nausea and IBS again. I believe I waked candida up by adding foods like dried fruit and berries into my diet. (Apple diet was a killer as candida loves apples..)

It has taken a year to fight with this fungus issue (not only candida I think) but finally things are looking better. I had to go even more strict with my diet. I can hardly have any carbs at all at the moment..but that is an other story. Most importantly NSD works, it saved my life!

I want to thank eveyone at KickAS, you people are great! THANK YOU Tim, John, Chelsea, Rita, Jeanne, Charlie, Ted, Gerard and many many others.

Some things I also want to mention:
*
I was avoiding foods containing sulphur as I thought they fed klebsiella but now I believe my symptoms were die-off reactions from fungus dying. Eg cabbage, broccoli and eggs contain sulphur but they are also strong antifungals.
*
If NSD seems not to be enough, I recommend going to http://health.groups.yahoo.com/group/candidasupport/
There is a wonderful program for healing (not just candida but everything else to do with poor immunity too).
*
If someone feels I could be of any help for them, do not hesitate emailing me.

Take care everyone!
Love, Kaisa

Hello everybody:
I have been with ankylosing spondylitis about 15 years, the last 9 and diagnosed before and after medical treatment have my EA was always for the worse and the pain shoots, anquilosado (fusing), low labor .......... were on the rise .
As in most cases, I went through multiple treatments of anti-inflammatories, rehabilitations, searching for alternative medicine .... and a continuing process of physical and psychological decay hacian (made) me think to obtain a disability pension for the future.
Everything changed the day I found the English page of a sick www.izorrategui.org
I drew attention to the way they deal with the enfermedád (illness) and soon decided to do the diet, resulted in:
In a few days leave 14 pills sulfasalazine, inacit, voltarén ..... I left two weeks inmobilizado bed, I could volvér (return) to work and make life normál. I have not returned to have outbreaks or inflammation. Evan diet, also excluding potatoes, rice and .... I just helped aloe vera (occasionally) própolis, polem ... Fasting apple once a week, one day a month and three days every six months, I consider indispensable.
I continue my treatment without the support of reumatologo to diet, but if I wish to inform you that in my evolution continues with Radiography (X-rays) and confirming the transfer, I have an analysis for endocrine seguridád (safety) have to be doing the right thing and have no deficiencies in iron, Magnesium .....
Actualidád (actually) I have seen in the last visit to reumatologo, that in his opinion the radiography (X-ray) confirmed that I did what my state external tells me every day that I am in remission and my Radiography (X-ray) of 2000 shows a sacroilitis bilateral grade II / IV, similar to 7 years later, thanks to the diet without starch.
Also, after two years of diet, I still have some results in the analysis that is not possible to detect any abnormality in the food, just the "good" cholesterol that is at 70, so I do not think it necessary to take supplements in food my diet, I emphasize that it is always "my diet," possibly in other cases, with a little more power, with little intake of salads, miél (honey), nuts ...... not happen iguál (the same) and needed help, but taking food rich in iron, magnesium ... etc.todo (everything) should go well.
Regards to all and I hope seguír (to follow the) learning here as a starch diet with bringing in a healthy way.
Any information on the evolution will find me here:
Http://elblogdelalmidon.blogspot.com
Vima

Dotyisle edited some of the Spanish words in () - 2/19/08

Perdonád translation.

Hello, Victor. I'm glad to see you here, in Kickas. Fellow kickers must know that Victor or Vima is a expert on NSD and He is one of most dynamics participants in the spanish forum http://foros.espondilitis.info/, having also his own web site about NSD. Welcome, Victor. I'm sending to you one Private Message.

Pello.

Chimike,
I read your story with great interest as your story is very
similar to mine. I am doing NSD along with some enzymes, Wobenzyme and some other from Japan as well as regular vitamines and mineral supplements. I have not felt so good for years. I'm 62 and have had AS symptoms ever since I returned from a mission trip to India. My stomach was a mess. I lost weight. But I gradually got better. Then the aches and pains came. My neck went stiff and feet decided to get stiff and sore. I kept getting stiffer shoes which was not smart as my feet got more stiff. Now with PT and execise my feet are getting better. The diet has calmed down my neck. Now it's a slow process of regaining strength lost during 2 years of near immobility. Hope all is going well. Take care.
Landis

OK, so it's been a while since I posted my success story here and everything is going great. I pretty much know what i can and can't eat now so consequently, I am mostly pain free. In order to get fit, I have re-discovered cycling, this time on a recumbent bike (Cruzbike) which is great fun and highly recommended, plus our 11 month old loves it in his seat on the back.

Anyway, the reason for my new post. I have come to realise, in my previous post, I have given some bad advice for those starting the diet, which I feel I must correct, I said, "Take a good multi vitamin, and vitamin C".

This (from my experience) has to be corrected to, "DO NOT TAKE MULTI VITAMINS OR VITAMIN C WHEN YOU ARE STATING ON THE DIET.” Why?

After many months of trying various different ‘multi vitamins’ and ‘vitamin C s’, I have not found a single one I can take without trouble, (including the ones naturally sourced from vegetables). I get a very clear and noticeable reaction within 24hours, lasting for at east 48hours every time I take them. This probably was the reason it took me so long to get the diet to work properly originally.
I have to say, I don’t seem to be suffering from any ill effects through lack of vitamins whilst on this diet and in fact, if anything, my resistance to colds etc, seems to have gone up slightly lately.

Wishing you all the very best.
Stuart.