Kickas.org Forums Treatments, Drugs and Alternatives NSD and diet-related; NSD Diet Success, Head Count

Hi there everyone,

I wonder if we can have a headcount of people on this site who have had some degree of success with the no starch diet. It seems to be quite a hot topic here and beyond anecdotes, but do we know what percentage of people here have actually had long term success with this diet to the point of stopping NSAID's.

For each person, It'd be nice to know:

1) Have you had
a) no
b) any
c) some
d) great success
with any dietary modification?

2) Did your diet exclude
a) all starch?
b) refined sugar?
c) dairy?
d) a, b and c above?
e) other, modified NSD?


I, for one, tried a no starch, no yeast, no dairy, and no nightshade diet in 1999 with no reduction in pain. I also took part in two clinical studies for Enbrel for a few months with no improvements.


Health to your backs!

Mo

1d, 2a, no longer need NSAIDs.

...if they be strong or able to endure physic, yet it brings them to an ill habit, they make their bodies no better than apothecaries' shops; this and such-like infirmities must needs follow.

In the past here were my NSD observations:
1. e -- inconsitent results (ups and downs ). pls see the thread krishna
2. a

Cyrus,
1d and 2a and no milkproducts except fermented ones. So I do eat cheeses and yogurt. I started 1 1/2 years ago, although I feel a lot better and made progress in a lot of areas I still need some NSAID intake at the moment though greatly reduced (1/4). Or does that put me in the 1c category (no problems with that).
Gerard

"Walk gently, breathe peacefully, laugh hysterically." -Nelson Mandela-

1-d, 2-a, no longer need NSAIDs.

Paul

The concept is only controversial over on the other side for some people with guilt complexes. Honestly, I do not care if they want to eat batterdipped fried Twinkies for breakfast, lunch, and dinner, more power to them. Now, if some idiot who is actually a pharmaceutical ad rep wants to insinuate I should take a very expensive, dangerous drug so I can eat batterdipped fried Twinkies for breakfast, lunch, and dinner, or I am a fool, that person and I may be engaging in an exchange of words that will not be pleasant.

People should eat what they need to to survive.

I'm not straight NSD, I ate a little rice last night, so flog me. I'm also not completely drugless, I will take a single serving of something over the counter 2 to 3 times a week, usually on weekends. I don't feel guilty about that, either. There is quite a difference between taking prescription strength NSAIDS daily at the recomended dosage and a single 200 mg ibuprofen for sports (or fun ranching activities like irrigation work) so my knee does not blow up and my neck does not start spasming. I stretch and exercise religiously. I am not pain free. I am functional beyond anything I imagined 5 years ago.

1 -d, great success with the diet.

2-d and e.


I avoid wheat breads and glutens, as much food starch as I can(that crap is EVERYWHERE), almost all sugar, and lactose in dairy. I still eat some hard cheeses. I know I have a reactive form of arthritis and also respond positively to antibiotics. I'm happy something works because my kidneys and liver cannot tolerate many prescription drugs AND I have allergies and asthma, I am damn lucky I can at least take a little otc stuff. When I take NSAIDS daily, their effect quickly wears off and they begin to have bad side effects for me.

I wouldn't assume for a second what I do would work for any body. But maybe some body.

Hi Mo,

Great question. While some seem to have amazing success with the diet others do not. I am in the do not category. I have been on the NSD for 23 weeks now and no dairy (except for the occasional indulgence) I have limited success. I havn't actually tested it so I am guessing I would be a lot worse if not on it. I have noticed that when I have eaten the occasional ice cream I had a huge increase in pain. That is one of the reasons I think I would be worse off if not on the diet. Since being on it my cholesterol level has gone up but I have lost about 8-10lbs so that helps to motivate me to stay on it. I am also on sulfasalazine and a daily NSAID. I have greatly reduced my sugar intake but would not say eliminated sugar altogether. I plan on staying on it and asking for a stronger drug than sulfasalazine my next rhuemy appt. Hoping to find something to stop this disease. How long were you on the diet? How long were you on enbrel?

Deborah

There is no drug stronger than a good attitude.

Hi,

1d, 2a.

But I also on LSD most of the time - meaning, I add rice sometimes on my menu.

I am free of NSAID's in two years except one series after back from a month long trip which cause bad flare.

Sinta

Thank you all for your responses. I'd love to hear from more people. Quick responses are fine. I am frankly happy if anyone gets any level of comfort from anything, meds, diet, placebo or voodoo. But it is good to know for sure the condition indeed reacted and that the reaction was a response to say NSD. Just the fact that more than a few people have had good success with NSD is remarkable but it'd be nice to know the percentage is beyond chance. It's much better to have our own data here than believe or disbelieve contradicting papers on the subject.

I was lucky enough to be the only patient for the double blind study for Enbrel at UCLA and hang out with Dr David Yu, a world authority on AS. Neither Dr Yu nor Dr Bulpit at UCLA believed in any dietary roots to AS and Alan Ebringer was viewed as a "creative" kind of a person. Even if Ebringer's theories are all wrong, it is important that some people here seem to be getting some level of relief. I would be more than happy to bring up such cases to Dr Yu, have a teleconference with some of you or possibly set up an independent experiment. One experiment that just now came to my mind would be to send double blind snack bars to a group of people from this site who have had great success with NSD and believe small amounts of starch can induce flares in them. The snacks would be ground up mixtures of various ingredients that may or may not include starch. We would then see to what extent people are capable of guessing the starch composition of the snack bar. Needless to say, we'd hope the pro-NSD folks would not cheat using iodine };^)

As to Deborah's question regarding Enbrel, I was on both the double blind study and the open bottle studies for about three months. I need to find out whether I was on the placebo or the real thing in the first experiment. I just assumed it was placebo from the first week. But in the second test, I was on the real thing.

As far as the NSD diet, I must say I started by cutting out starch, but then read about Candidiasis, Leaky Gut, and finally Jeff Bland's book on nutritioneering, where he suggests avoiding nightshades as well. I found Carol Sinclair's book somewhat annoying. (The material could have been presented better and in less number of pages. The recipes were uncreative and, let's say, British.) I did both Comprehensive Digestive Stool Analysis and Intestinal Permeability tests thru the Great Smokies Laboratory and saw a local nutritionist who is treated like a holistic prophet by her patients. She put me on Collastin plus a strict diet, vitamins, and a regiment of anti-fungal herbs. In retrospect, I think the idea was unfortunately taken to the nth degree such that it was impossible to follow the no starch, no sugar, no red meat, no dairy, no night shades and no yeast (vinegar) diet or afford the long list of supplements. I was on a tofu + greens salad diet for weeks with no improvement. I finally got the nutritionist to okay rice since it supposedly digests faster that other complex carbs and may leave less room for a Leaky Gut situation. This might have been a mistake. I think we were sidetracked from a no starch diet to a no gluten one. I have had quite some pain for the past month and have decided to give NSD another try. I have been on a NSD for the past two weeks with no improvements. I also received a cortisone shot last Tuesday, which does not seem to have made any difference.

I must say despite my nightly and morning stiffness, I have been a good AS case for the 12 years that I have had it. In 2001, I worked out heavily and would dead-lifting 400 lbs. However, I have always been on NSAID's and lately none seem to be doing the trick even at really high doses. I have been on Day-Pro, Indomethacin, Naproxyn, Voltaran, Sulindac, Celebrex, Vioxx, Dolobid, Mobic, Bextra. Most were good for only one year except for the last two that barely helped for a month or two.

If not a coincidence, a course of a Chinese herb branded as "mobility 2" and, at a different time, a
provocative chelation test for heavy metals with DPMS, seemed to reduce the pain quite a bit for a few days. I need to repeat these two experiments to report with certainty. Otherwise, I have learned to "crack" myself and stretch constantly. This brings short-term pain relief and mobility.

So that's my story.


Mo

1 d
2 a, c, e

Only other thing eliminated was NSAIDs.
Time of day for different foods was modified.
Supplements added of course and fermented food as much as possible - mainly for probiotics, but also easier assimilation

Ted