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

Heh all,

Well my story so far….

I was diagnosed in 2003 after many many visits to different doctors throughout the years trying to work out where this pain in my Butt came from (SI’s of course)

All through my teens I had lower back pain (lumbar) I thought it was windsurfing. I was always a very active person. Fit. I had no idea. I started taking nsaids – loved it… made me feel normal…I didn’t know what I was doing to myself.

I worked in mining…its what we do over here in nor west Oz.. I grew up in it...born to it..

Doing 12 hour shifts when I was in my mid 20’s running up and down stairs in a processing plant…then it started to really hit…I started to limp… pain in my left hip you see. The guys used to say to me “I’d hate to see you when you are 40” I started getting scared. I couldn’t work HARD like I used to…

Doctor after doctor – checking me for prostate cancer – you boys out there know the test?? Lol. Then I was sent to a rheumy, had a blood test, x-ray… bam…”you’ve got AS my boy…!!!” On your bike and…all you can do about it is take Voltaren…. Nothing else (honestly that’s the feedback/advice I got from the rheumy here in Perth!!! That’s it – no recommendation for a stretching regime or anything) haven’t seen a rheumy since.

So…I took the drugs. I would mark the days on the calendar how many pills I would pop in a day…I was up to four a day and it would fill every day of the month… I have never liked pills of any sort. Even panadol was something I didn’t take.

I had the pains that everyone else here has had I’m sure…couldn’t sleep, couldn’t roll over in bed without screaming out loud – even making it to the loo was just toooo hard.
I kept working somehow… and they closed the plant where I worked. I moved on…got another job in a control room (think Homer Simpson)

Plenty of time to research the net. I came across KickAS and read and read and read. I feel like I know all of you here (in the diet section anyway) I started cutting back on the “problem foods” it worked. Took a while…but it really works!!! I had kinda drawn a connection myself years before. As I had noticed on days that I didn’t eat anything I would feel good – but of course, I had no direction, no explanation.

I’ve been almost in remission this year up till now …then it came back…this is my first day job that I’ve had in more than 10 years (maybe there is a sunlight connection hey Krishna??) So, back to the diet – seeya later AS – I’ve really noticed however that since I’ve started supplementing in the last week its taken off in leaps and bounds – go!!! Home made yogurt/glutamine/fish oil/zinc!!! Supplementing is the other link in the chain – heal that gut!!!

Thank you all here at KickAS…you saved me!!! Thank you.

Geoff

I can't believe I didn't post this earlier -

First big flare was 7 years ago - took 9 months to even guess at what it was, but then it went into remission. It slowly started to creep back over the last few years, until this winter it got out of control and I was starting to lose functionality. Everything became very difficult, whether getting out of bed, a chair, a car... Even breathing hurt sometimes. I spent months reading everything I could about AS and the treatments that people have used. I tried all kinds of stuff to no avail, but was aware that the NSD should do some good. Initially I went on NSD with little success because it turned out I was popping all kinds of starchy supplements and didn't know it! Later I doscovered that things like beef and eggs, which I was allergic too as a child, also seemed to set of the AS monster, at least in a mild way. Sooo- 6 months NSD later, with no eggs or beef, very little dairy other than butter, and I am almost pain free!

I have lost weight and am more active than before and honestly feel better physically than before the diet began.

I no longer take any pills at ALL for AS - it was tough but I finally got off NSAIDS which really seem to make the disease worse, IMHO.

I feel lucky to have found this site and the people on it - I have my life back in a big way and I plan on kicking AS for a long time to come. It still lingers in the wings, waiting to bite me if I stray from the diet but I know what to do now.

One piece of advice I can give to people trying the NSD: Be very very strict about it. It may not work at all unless you do - sometimes even small things like spices (most of which are starchy) and garlic can set you off and then it will seem like NSD does you no good. It sounds nuts, but I would suggest trying something like nothing but bacon and eggs(no pepper!) for 2 weeks...And cut out everything else, even supplements! Just drink water. You will get used to the lack of carbs after a few days and it will be a much more fair test of how food affects the AS. (it will also be easy to plan, and even though it seems like its unhealthy, a few weeks wont hurt you) - its important to have some success in the beginning so you will know you are on the right track. Then you can add more to your diet and you will *know* how to get back on track if something goes wrong.

Go out and kick some!

Very encouraging and very uplifting. Thanks guys and God bless you.

A year and a half ago I was at the end of my rope. Couldn't sleep, couldn't walk straight, mornings were hell. My neck was almost completely immobile, my back spasms were unbearable, my whole body would seize up, I couldn't breathe, life was miserable. I had gained 30 lbs from inactivity, I was popping several Aleve tablets each day just to make it thru the work day. I endured the stupid comments from my co-workers about how old I seemed. I wasted thousands of dollars on chiro visits and physical therapy. I was sinking into depression because no one knew what was wrong with me and I felt helpless.

Finally I went to a new doctor to get some blood work done out of desperation. He took some x-rays and a couple days later I was diagnosed with AS. Reading about spinal fusion scared me to death. I used to be athletic, I raced Mtn bikes, I played basketball and tennis. Now I was overweight and doomed to be on expensive medicine or be crippled.

Then I found this site, I read about the diet, I got Carol Sinclair's book, I had hope! I started the diet, I had some bumps along the way, I had some bad flares and made some stupid decisions, but after a few months I finally got used to my new lifestyle. I started working out EVERY day, whatever I could do. I think weight training is VERY beneficial, especially back exercises. I lost the 30 lbs I had gained by drinking lots of water and avoiding starches and most carbs in general. I took vitamins and fish oil. I started doing yoga in the mornings. I work around the house instead of sitting in front of the tv or computer.

Now, I am pain free. I don't take any meds, not even tylenol. I have packed on a lot of muscle in the gym, I can turn my neck like a normal person, I can do sit ups, I can wrestle with my kid, I can practice martial arts, a couple weeks ago I rode over 50 trail miles on my mtn bike in one day and I am training to start racing again next season. Along with exercise, the No Starch Diet has given me my life back! I miss the junk food and bread, but all I have to do is remember the sad, broken down man I used to be.

I don't post very often on this page but I read every post and I am very grateful for those who take the time to answer questions and help others. If you are reading this and are thinking about trying to diet, I encourage to get a gym membership right away and make that a part of your new lifestyle, anything you can do is better than nothing. Stay in motion, stick to diet for a couple months before you dismiss it. It takes time, but once you have your life back it is totally worth it. Jason M.

This was very encouraging, thanks.

Wow, what do you eat, if you are allergic to meat, eggs and dairy? That on top of NSD leaves only leafy veggies!

This was most helpful!

Hi,
Good success story.

Jay

It was February 8, 2006, my daughter Jenny's 13th birthday. My son Danny had been suffering from sciatica, limping and in terrible pain for a few days. It wasn't the first time he had sciatica. He had epidural steroid shots with a pain management doctor, Dr. S, at least 4 times that I can remember. This particular event seemed different. He came home from work and was in unbearable pain. He couldn't walk, sit, or lay down without overwhelming pain. Somehow he managed to go to dinner, as to not spoil his sister's birthday.

That night, there was no relief from the many Advil pills that he popped in his mouth, to try to control the pain. Actually, Advil had become a nightly ritual as well as an all day ritual too. He couldn't cope without it. The next day, we went to the hospital for 4 days. Saw every doctor imaginable. He was given very strong intravenous pain meds, so at least he could sit still without pain. After 4 days, over $4,000.00 of hospital bills {after insurance}, and no diagnosis, we went home.

Danny did go for another epidural steroid, but this time, the doctor gave him the shot, more for his lower back, which was where the pain had now seemed to be concentrated. He recommended he see a sports medicine doctor. So off we went to yet another doctor to see if we could get a diagnosis.

Dr T. examined Danny, and proclaimed, "I think you have Ankylosing Spondylitis". AS is an autoimmune disease for which there is no cure. Thanks doc, we might as well throw in the towel. We came home , looked up AS online, and then really got depressed. When the doctor got the blood tests and the MRI results, he confirmed his diagnosis. He told us we would be better off seeing a Rheumatologist.

With Dr. T's recommendation, we found Dr. A, a Rheumatologist. Wasn't thrilled {understatement},with the lack of personality from this "excellent doctor". Dr. A had no compassion. He was quite dismissive and slightly uninterested in Danny's condition. In a monotone voice, he told Danny that if the pain became unbearable, there were other pain medication choices, but there were very bad side effects to these medications. Otherwise, there is no other treatment. I remember the look on Danny's face. It seemed hopeless. He said to me, "Mom, I can't live with this pain." As a mother, my heart broke. The last thing a parent wants to hear is that their child has an incurable painful disease.

The only way Danny could deal with the pain the following year was to take lots and lots of Advil. He went for his check-ups with the Rheumatalogist. Same disinterested ,emotionally removed interaction with this "excellent doctor". We would ask him the same questions each visit. Is there a cure? Was there an alternative medicine? Is there a special diet? The answer was always NO, NO, NO.

Danny kept refusing the stronger pain medication out of fear of the side effects.

I became obsessed with finding information online that could help him deal with the pain from AS. My search was long and extensive. Then one day, I came across KickAS.org. This is where the clouds parted, and the sun came shinning through!

I am skeptical about forums. I wasn't sure that the information on KickAs was valid, so I read all the information available on this web site, and also read the daily discussions.

No Starch Diet? Why didn't the doctor tell us about that? I called the doctor to ask him about the No Starch Diet. He advised me against it. Even went as far as saying it was dangerous. That the diet lacked an important food group and that Danny would become deficient in many important vitamins and minerals. I continued to read on this new web site KICKAS.org. Dr. A had not offered us any hope, yet I was reading about people who were responding to this diet. And they were still healthy after years of being on this diet. So maybe there was hope?

I told Danny about the web site and the diet. He glanced at the web site, and told me there was NO WAY he would do that diet. I decided not to push the diet on him. I continued to read on and join the free forum, so that I could post our questions. I would say" Danny, I got responses to our questons, do you want to hear what the people on this site are saying?" He would always say, "Sure".Then I would read the responses to our questions, from these incredible, thoughtful, caring, and brilliant people.

Jan 23, 2009 was a very painful day for Danny. He had been suffering for about a week with neck, upper and lower back pain. He was going beyond his pain tolerance level. He said to me, " I want to try that No Starch Diet and I also want to try to eliminate dairy." Wow! He was ready and so was I. We really wanted to believe it would work.

I bought iodine to test all the food. Looked up what foods he could eat on the kickAS web site, and then, we were off and running.

After about 4 days on the diet, Danny became very angry and depressed. He said," There is nothing on this diet to eat. I can even eat in a restaurant. I won't live this way". But some inner voice kept telling him,maybe this diet might work.

No Starch, No Dairy! Lots of cooking and reading on my part. Lots of guidance from the KickAS, support, recipes, alternative medicine, and even jokes.

One week later, Danny says to me,"I THINK THIS DIET IS WORKING. MY PAIN IS WAY DOWN. THIS DIET IS NOT HARD TO FOLLOW. IF MY PAIN GOES AWAY I CAN DO THIS'. What? Did I hear correctly? Are you kidding me? You feel better? You could continue on this diet? What happened to the anger? Were we really onto something here?

The questions started to flow from us on this web site. The people on this site are extraordinary. All of our questions were answered. Although some people had different opinions on their remedies, all had respect for each other's view points. The people on KickAS are so well informed, caring and nurturing. There are many ways that people treat their AS, because not all AS sufferers have the same symptoms. We took from this site what seemed to work for us, AND IT DID! There are many alternative methods that other people have responded to. We wouldn't hesitate to try those ideas if need be.

After 5 months, the pain level had dropped from a 10 to a 3. Still had some light pain with stiffness. Continuing to be encouraged by the wonderful people on KickAS, we knew to forge on. Everyone who had success with this diet, had different time spans of when they got relief.

On this web site I also read about Apple Cider Vinegar/with mother. People reported that it was giving them relief to stiffness and pain. So once again, I approached Danny with this, too simple, idea. How about trying apple cider vinegar in water? His response once again was "NO WAY". Not surprised, I tried it myself. It seemed to immediately relieve my arthritis pain. Was this real? Was I imagining this was helping me? So I insisted that Danny try it once. I showed him that I drank it, and that it wasn't bad tasting. Once again, he thought his mother was crazy, but agreed to try it. That was the first night he slept PAIN FREE. He said, "Could it be the vinegar?". Not yet convinced, he tried it every night for a week. Same reaction. No Pain, No Advil. It seemed to be the ingredient he needed for his stiffness.

It is over 6 months that Danny started the No Starch, No Dairy diet. One month on Apple Cider Vinegar/with mother.

FOR THE LAST WEEK, DANNY HAS BEEN PAIN FREE! YES, I REPEAT, PAIN FREE!

Nothing short of a MIRACLE.

A heartfelt thank you to all the wonderful people at KickAS. You all have made a difference in giving Danny back the quality of life that he and everyone else deserves.

Sincerely,

Laurie

[This story is submitted by Professor Ebringer on behalf of "Mrs B," who's ESR is documented in the paper "The Use of a Low Starch Diet in the Treatment of Patients Suffering from Ankylosing Spondylitis," available online here in the Technical Papers section of KickAS]

Ms. Judy Beard writes:

It still surprises me that when I was told by the consultant rheumatologist at the Middlesex Hospital back in 1969, at the age of 20 that I had ankylosing spondylitis (AS), the news came as a huge relief. I had never heard of the disease but somehow I felt vindicated. The pain I had experienced over the previous five was not down to “growing pains” nor was it a figment of my imagination for I had been told many times that there was nothing wrong with me that exercise could not cure. It had a name and it was treatable.

To be fair to the medics, diagnostic techniques of such conditions in the late 1960’s were not as well advanced as they are now. It was thought in those days that AS was a disease of young men not women. Nevertheless, at 15, I had low backache, more prominent at night and lasting for several hours. By 17, the pain started to travel from my back to my buttocks and thighs and sometimes I felt it on one side and sometimes on the other. At 19, I had developed muscle stiffness which was worse again during the night and I had acquired a slight stoop in my posture. The muscle stiffness eased in the mornings after exercising.

It was after graduating that my two university flatmates ganged up on me and made me promise to do something about myself when I relocated to London. That is how I came to be at the Middlesex Hospital. On diagnosis I was prescribed phenylbutazone to reduce the backache and a course of physiotherapy to improve my mobility.

By the time I was 25 years old, the pains had spread to my shoulders, ribs and hips. It was then that the hospital confirmed that my ESR (erythrocyte sedimentation rate), a measure of inflammation was 55 units which indicated that the disease was very active. The upper normal level of ESR is 20 units.

It was in 1975, that I found out that I was HLA-B27 positive and that I had inherited the gene from one of my parents. This would explain why my mother’s brother also had AS. I was treated with antibiotics, phenylbutazone and other non-steroidal anti-inflammatory drugs or NSAID’s. Sometimes I felt better but at other times the pains came back. I do remember that in 1976 there was an exceptionally hot summer, and I had never experienced so much pain.

Two years later the pains and stiffness reached my neck which meant the whole of my spine was affected by the condition. I could not turn my head and had to rotate my whole body looking to the right and left when I crossed the street. During my driving test, reversing round a corner proved to be the most difficult manoeuvre, but I passed. Nearly thirty years on, I was amused, when I took part in a fundraising day on a driving test site, to discover that I could reverse a medium-sized truck into a designated parking space without difficulty, relying solely on its huge mirrors. The reason that I could do this was simply that I have had to depend heavily on mirrors ever since I passed my test all those years ago.

In 1983, Dr. Ebringer, who was then my consultant, suggested that I should try a “low starch diet”. Initially I had 3 nutritious meals a day with fruit, vegetables, fish or meat but each had very little starch. The term “low starch diet” meant no bread, no potatoes, no cakes, no pasta and no rice. It was not always easy to stick to this regime but it is now a way of life – with the occasional lapse.

I began to feel better and my friends commented that they had noticed me “running upstairs” something which previously I had been unable to do. A year later my ESR was 15 and I had reduced the painkillers I was taking. The closest underground station to the Middlesex Hospital was Goodge Street on the Northern Line and on one visit to the hospital I walked up the 166 steps of the station, when the lifts were not working, rather than going to the next station and taking the escalator. Proud of this achievement, I mentioned it to Dr. Ebringer and it is written in my hospital notes of 1983.

In 1990 I spent three excellent weeks at the Royal National Hospital for Rheumatic Diseases in Bath. Five hours a day of concentrated physiotherapy and hydrotherapy made me much more mobile.

In 2000, I completed 25 years of attendance, every 4 to 6 months at the “Ankylosing Spondylitis Research Clinic” of the Middlesex Hospital. Since embarking on the “low starch diet” my ESR was never above 20 units in 41 outpatient visits. On two other occasions it was 22 and 23 units respectively.

This account is based on my hospital visits which focussed on the pains and discomfort of having this chronic condition. I am now 57. I have had a good career and now have a demanding job as a director of a well known charity. My spine is fused and the changes are irreversible but I am reasonably straight and so far my general health is excellent perhaps because of my healthy diet. My stiffness improves the more exercises I do and as part of my regime I am glad to go
walking every Easter with my local AS group.

I will never know whether anything could have been done to reduce the effects of the disease in its early stages and I don’t dwell on that. Having ankylosing spondylitis has given me a different life from the one I was expecting but I can honestly say that it has never stopped me doing anything that I have wanted to do.