Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Diet worked for me!!!

After an inspiring and affirming dialogue with John the DragonSlayer, I have decided to share my story on this forum.

I have been symptom free (without drugs) for 1.5 years now. I will tell you what I’ve done, but first a bit of background.

My initial bout of symptoms hit hard at age 31 in November of 2002. The circumstances may be relevant. My wife was pregnant with our first child, I had just begun my legal career and was in the midst of my 1st killer stressful trial, and we had just relocated to Vancouver, Canada and moved into a new home.

My symptoms (sever painful stiffness in the mid-thorasic spine) would wake me up at about 4am…so I could sleep no more…I’d get out of bed and struggle to straighten my spine…a hot shower and stretching helped a bit but the pain and stiffness lingered through the day. It felt like my spine was a collapsible garden chair that was collapsing on itself. It made me feel like crying the whole time…feelings of grief…because the mid thorasic region was right in front of my heart…my breathing was compromised too…muscularly.

I was diagnosed with AS based on a positive gene test (HBLA or whatever) and my rheumy wanted me to have a sacrum xray but I refused so as to protect myself from radiation. I have no sacrum symptoms. The diagnosis stood anyways. I have been turned down since for disability insurance.

My rheumy referred me to a main stream physio for an education session. This physio was not encouraging and told me to do my exercise and take my NSAIDS. The physio referred in passing to the kickas.org website and the Ebringer starch diet theory but he told me he thought it was bogus.

I had no faith in my physio nor my rheumy so I immediately surfed kickas.org with an interest in whatever they were disinterested in. This was about 6 months since the onset of my symptoms. I was interested to discover the no starch diet and I went on it diligently. My symptoms disappeared and have only resurfaced on isolated occasions in association with my lapse from the diet.

There are some other things that I do that may or may not have contributed to my remission. I take at lunch time fish oil tabs, vit E and sellenium.

At bed time I take curcumin, bromelin and ginger (three separate pills) all of which are anti inflammatory. These supplements were suggested by Dr. Andrew Weil in his book Spontaneous Healing in the section that deals with autoimmune diseases.

I remain heavy on the probiotic…I took a liquid acidophilus beer like brew for a while but now I just try to get as much yogurt and saurkraut as I can. I believe that a good healthy bacterial population in the gut is key.

I also did a lot of exercise and yoga but I’ve slacked off considerably and it hasn’t affected my remission. I should get back on that routine for other reasons.

The other thing is this: since the onset of my symptoms, my wife would rub a special oil brew into my back every night. She would warm up the oil in a little candle device before rubbing it on. The oil was made by brewing in a big pot a gallon of olive oil with a considerable amount of marijuanna shwag and also we added a bit of this and that…some stuff to make it smell nice and a bottle of castor oil. I did the oil for about 6 months diligently and stopped once I’d achieved remission.

What do I eat? I eat loads of Quinoi….it is made just like rice and I use it as if it was rice…I melt cheese on it, I have it with spaghetti sauce on top, I combine it with just about everything….it is really nutricious and feels starchy but for some reason it doesn’t cause a flare up….perhaps the klebs just don’t like it. Each grain tends to retain its individual structure when it gets wet and doesn’t turn into a mush. Love it.

With the quinoi, I do not miss rice nor bread nor pasta because I can sub it in accordingly.

I eat lots of almonds…for breakfast in yogurt, for snacks with chocolate…and I even put marmite on the almonds for a salty snack.

My symptoms have been largely gone but they resurface occassionally and I suspect certain foods in my diet as follows.

I had a relapse in symptoms for two days in a row recently which I related to a big bowls of thick pureed yam soup each day. While I eat baked yams from time to time without problems…this pureed yam soup caused problems…the increased surface area and the quantity of porridge like slosh cause problems. Again this affirmed that the no starch diet is critical.

I drink soy milk but not the products with carrogeanan which I also suspect in relation to mild resurfacing of symptoms. Just from my experience.

Like I said, I believe a healthy good bacterial population is the diet is key. I have had resumed symptoms in relation to eating chicken in certain circumstances. My sense is that the bacteria inherent in the chicken meat competes with the good bacteria in my gut and disrupts the flora - leading to a resumption in symptoms. This seems to happen particularly when the chicken in not fresh out of the oven, grill or pan...ie when it has cooled, or been processed, etc. I now exclude chicken from my diet, which is a big sacrifice.

I eat lots of fish...but the kind without mercury content. Salmon is great.

I am so grateful to Dr. E and all on this site for showing me the right way to health…no starch diet. I do not touch NSAIDS and am all the better for it.

All of this affirms that we need to take responsibility for our own health...not to sit passively and swallow the pills they sell us.

THANK YOU DR. E and all on this group who promulgate the info about the diet. You fundamentally changed my life.

Doodie

more about quinoa is at

http://www.wholehealthmd.com/refshelf/foods_view/0,1523,74,00.html

The physio referred in passing to the kickas.org website and the Ebringer starch diet theory but he told me he thought it was bogus.

As they say, all advertising is good advertising and it got you hooked!

And they are talking about this site; we agitators must be rather irritating for them.

And what's he then that says I play the villain
When this advice is free I give and honest

Hi Doodie,

Wow! Thanks for sharing a wonderful story! The Quinoi is interesting. I'll have to look into that more.

Your comments about the chicken are interesting, too. My acupuncturist would say that makes sense because chicken in a yang or heat food, and we already have enough heat. I haven't noticed any problem with chicken, though, and if I tried to combine his suggestions with the NSD, I would be left with nothing to eat so I've just stuck with the NSD.

Best wishes -- and thanks again for posting!

Paula

Great to hear Doodie,

Always good to hear of success stories. I am a strong believer in probiotics as well due to personal observation.

Take care,

Tim

If you get up one more time than you fall, you will make it through - Chinese Proverb

Hi Doodie,

Do you know how difficult it was to not say Howdy instead of Hi?

For your info, there is an AS association in Vancouver that meets every 2 or 3 months and your Physio was a member (and probably still is).

I used to belong to the Group but stopped going as they were collectively against the NSD as well as against a couple of new or ancient techniques that I was using for pain relief.

There are several KickAS members in the lower mainland in case you ever want to meet any of them..

Welcome to KickAS and to the best part of Canada as well.

George

Quinoa is - i believe - pronounced Keenwa? - although if you use this pronunciation everybody looks at you as if you mad! But i was interested in it's usage. It's as starchy as hell and Im perplexed as to how it can be utilised successfully.

Billy

Yes, quinoa is starchy... but it more easily digested than other grains (also a whole grain)... so those that follow low starch may be able to eat it & not notice much stiffness. I will eat it from time to time when I am doing well, rather bland taste in my opinion.

Actually good source of protein.

Tim



If you get up one more time than you fall, you will make it through - Chinese Proverb

The table shows the comparison between rice and quinoa, per 100g.


WhiteRice Quinoa


Carb 79 60
Protein 6 11
Fat 1 5

Quinoa while starchy is still much less starchy than rice. While it wont fit the NSD bill it would still fit the LSD better than rice.

The recommended carb-protein-fat in normal people is 60-30-10, while athletes often go on higher protein at 50-40-10. While attempting to do the NSD, we need to also think that there are very few food choices if carb has to be totally avoided. And totally avoiding carbs may not be practicable or even healthy in the long run. By avoiding carb foods like rice we are not only missing the carbs but a lot of other nutirtion in the rice. Though nutritional supplements can he helpful in this regard. What about the fibre and other stuff that comes with these starchy food? Nature is really mysterious and nutiritional supplements cannot truly balance the rich food we get from vegetables, and of course starchy food like wheat and rice.

If the objective with NSD is to starve or kill the KP, I guess it would work equally well with John's antibiotic protocol and periodic fasting, and coupled with LSD (instead of NSD). Perhaps the 60-30-10 for normal people can be modifed for ASers as 30-50-20, instead of attempting 0-?-?. Too much protein overloads the kidneys and too much fat is also not too good for health. By avoiding carbs in toto, we are forced to take unusally large quantieis of proteins and fats. So I beleive taking some carbs will only benefit those who want to try the diet approach in kicking AS.

Ram






It is everything that we know and know not. It is the absolute entity the closest terrestrial approximation of which is the "infinite" universe.
It is pure knowledge, truth and being infinite. --- from the Upanishads