Kickas.org Forums Treatments, Drugs and Alternatives NSD and diet-related; Failures of NSD/LSD ?

Hi, bettyrawker:

I have written to Dr. McDougall and received kind reply.

We totally DISAGREE about AS; he knows absolutely NOTHING about this disease.

What he is spreading is the same vegetarian misunderstanding that damaged me (I was a vegetarian for 22 years because I had a type of 'rheumatoid' arthritis!).

So while I agree with Wayne Green and possibly Yourself about the value of RAW FOODS, I cannot endorse anything or anyone that so blindly ignores real results in favor of opinion: The battle we are fighting is very real and not just something that can be fixed with even megatons of the rhetoric that 'seems' right.

HEALTH,
John

WELCOME, pspondylitis:

Not everyone here at KickAS embraces the NSD and many do not agree with the basic mechanism, however, in a poll over 75% believe that there is enough of a connection between starches and AS activity that they do eat more "AS-aware" than otherwise.

Most of the die-hard NSDers do not require more studies.

And I have done enough research to conclude that this wheel has been invented MANY times throughout history--many books unconnected in space and time, tout the dietary control of AS.

Additionally, regarding the specific pathogen connection, I have tested upon myself the use of antibiotics in the control of AS symptoms and had immediate and wondrous results and have communicated this with over 200 other people with AS worldwide, the majority of whom have used both diet and antibiotics to their considerable advantage during the previous nearly 14 years.

Chelsea gave You the best specific answers, so I am in full alignment with others echoing approval, but I wanted to let You know, additionally that others with PsA (also B27 negative) have found relief through diet. Loz (our previous Chief Admin) had underlying celiac, so treated his PsA by eliminating gluten from his diet (which NSD would automatically do, but is much more onerous than need be in his case), but others have used antibiotics with some setbacks yet better to have that experience. I have come to believe that there is another germ involved in PsA, also a gut resident and also a starch-lover and milk fermenter.

This treatment should help very much--and much more and effective than the medical guilds now offer as it treats the cause, not just chasing around symptoms.

You are welcome to write to me if You would like the antibiotic protocol I used. The Road Back Foundation has a list of local physicians who are amenable to prescribing antibiotics for rheumatic conditions; these things are best used under some professional guidance of course.

Eventually, the medical industry will catch up with the medical science, but until then we must use ourselves as our own test subjects, creating enough anecdotal information to allow the guilds to take notice if they want to, but we do not need any further convincing and diet is such an easy thing to do (in a way) that a person with AS NOT trying it would be making a terrible mistake, but the idea is that we are allowed to make mistakes, but we want everyone to at least know the REAL 'facts' about AS.

You can make the connection between food and disease process, as I did, by fasting, long-term. It will be obvious. This reminds me of one member for which the diet did not work--and I really believe him, that he tried the strictest possible diet in earnest because he FASTED and got better, but ANYTHING he ate caused him to flare. It was impossible! I could not figure it out then and I don't have a very good explanation for it now, but here goes: He came back over a year later and the NSD now worked for him because he had found through hair analysis his mercury levels were very elevated and CHELATION helped rid him of this curse.

I never mentioned that I got chelated to help get myself out of a very severe flare while I was moving house. And until then, I never thought this had any consequence, long-term, on my own condition. So I'm for full-disclosure now.

I wish You HEALTH, by whatever means You choose,
John

Hi Dragon Slayer,

I hear ya. I will be sure not to mention Dr. McDougall again in these forums. I was just using the Dr. McDougall as an example that eliminating certain foods from the diet, and/or doing a juice fast as I currently am, has shown improvements/results in those with Arthritis. I don't think by any means his way is the end all / be all, but I do think it showcases examples of where dairy can still cause AS symptoms to flare up, and I think the reason a lot of people don't see improvement right away when going Starch free is because they are still consumeing dairy. I noticed the person who started this topic had gone 4 days w/o improvement, and I was just hoping they might see evidence in those studies to consider also removing dairy for the trial phase of their diet if they haven't already.

When I first started the SCDiet years ago, I finally realized long into it that the darn dairy was holding me back, even though I did the whole 24 hour yogurt protocol.

I will say that for me, Starch Free is the first buildling block in my diet, but from there I had to go to a mostly Raw Veggie & Fruit diet to truly feel alive again. The only issue I have now is not overdoing it on honey & nuts made into raw desserts. I am now doing a juice fast / cleanse that and giving my body a nice chance to heal, and in turn I feel my body thanking me for it!

-Andrea

I second Chelsea's answers. Exactly how I feel on every point.

I hope I don't sound too terribly harsh here, but if one is worrying about the quality of their life diminishing because they can't eat starches versus debilitating AS pain, I really do question the level of pain they are even in. Some people with AS have very mild pain that is just irritating. Maybe the diet at that point would diminish their quality of life. But some people like me had serious debilitating pain that for years took away any quality of life I had. I have my life back, and don't miss the starches.

@bettyrawker,

I viewed that TedX video with the doctor with MS a few weeks ago. Simply amazing. It is a great video. She has a great story.

A doctor advocated the McDougall diet for me. Sounds great in theory. However, I communicated my concerns to that doctor what it might do to my pain levels, stiffness, and inflammation. He wasn't really interested. Dismissive almost. We no longer work together. He was advocating it as a way to combat biofilms to enhance antibiotic response, yet offered me no proof of these biofims, their magnitude, and the impact on my health. I believe in biofilms, but was not willing to follow something he could not prove.

@lar84,

I love, and I mean love, your response regarding not eating starches diminishing the quality of life versus the debilitating pain of AS. So spot on!

I really appreciate the time everyone has taken to answer my queries. Perhaps, someday, if i have the energy, and with everyones cooperation, i can organise a structured questionnaire, so we can collect data about this diet. I also must remember to keep updating my progress on this forum. I really believe, that the more data we can collect, the more we can take this diet forward.

I have been on the No Starch Diet for 10 years now... my how time flies. I agree with other responders..

- Yes restrictive... but after time it is a way of life. I no longer find it restrictive.
- The level of my pain made the decision to change to diet an easy one. I could not imagine living with the pain day to day I had longterm.
- I never like the "placebo" comment personally. Wish those making those comments could live in my body for a year... then they would realize this is no placebo. Pain does not go from 7-8 to a 0-1 because of a placebo. There are enough Success Stories here to put the "Placebo" theory to rest.

Kudos to all the responses.

Tim

I have an anti-success story as evidence against "placebo". My last bout of iritis occurred when I broke my diet without realizing it had happened -- bad stuff was slipped into my customary almond cookies. It was only after my flare started that I discovered my favorite baker had run out of vanilla flavoring and substituted vanilla powder without reading the ingredients carefully enough.

The placebo effect is a very real effect, otherwise, why need the many hundreds of thousands of medical studies using sugar pills etc. The basis of science is on studies design to minimise the placebo effect. I know there are many who bash science, but we must not forget that science is what has discovered HLA B 27, MRI, NSAIDS, biologics etc. Yes, many treatments for AS are far from perfect, but at least there is something to help us. This does NOT mean that your relief is due to the placebo effect. What it means though that more formal data collection in necessary. It is entriely possible that those with success stories are more likely to post on this forum, whereas those who the diet have failed are in no mood to post ....
I am not an expert in data collection, would like to , in the future perhaps design an on line survey where we could collect such data. It will be tough to do, but I feel we owe it to the AS community to try and clarify this diet.

So far I have been on this diet for 1 week, and there is not even a little drop in the flare intensity. I am essentially living on eggs, bacon, and grapes.


Thank you

I am trying to make sense of why so little starch can make the diet fail. It is very likely that only little vanilla powder would be used in cookies ( and does vanilla powder have starch, Google it, many seem to be crushed pure vanilla ?). The low starch diet does not get rid of klebsiella, even in the original studies. As far as I can understand, the starch theory is very different to, say the gluten theory that causes celiac disease. With gluten, gluten directly causes an "allergic" reaction. Therefore, even tiny amounts of gluten can harm the gut in celiacs ( similar to those with nut allergy, one nut or hundred nuts do not make any difference, both amounts can kill). The starch theory is very different. Allergy point of view, the starch itself is harmless. Only by being food for bacteria that starch causes problems. Now the question is , how can say the tiny amount of starch in say a almond cookie or vitamin pill cause an explosion in growth of bacteria ?