Kickas.org Forums Treatments, Drugs and Alternatives NSD and diet-related; NSD/LSD: The facts?

Hi All,

I'm new here, and I must say it's great to find such a wealth of information.

However, reading through this forum does give the impression that there is still some debate regarding NSD/LSD, so I'd like to try and clarify the some of the points I've picked up in these threads.

So, how accurate a reflection of the situation are the following statements:

1. The scientific basis for the NSD/LSD diet consists only of the research carried out by Dr. Erbinger.

2. Dr. Erbinger's research has not been subject to the widely accepted scientific process of peer review.

3. There are a large number of people who assert that NSD/LSD has been effective for them.

4. For some of those people a very strict zero starch policy is the only thing that works.

5. For some, merely reducing the amount of starch can help.

6. There is some suggestion that avoiding dairy is also helpful in some cases.


I would be grateful for a point by point discussion, and I suspect that others would find this helpful too.

Could I ask that we keep this thread strictly fact based - there is plenty of opportunity for opinion elsewhere on this forum.

Hello and welcome

I joined a couple of months ago, and am a No Starch Dieter.
I don't know the answer to all your questions but will give it a go!

1. I don't know any other scientific evidence other than stated by you.

2. No, Ebringer's research is not widely accepted.

3. Yes, there are testiments that NSD/LSD work for some people (myself included) and there are testiments that they do not work.

4. Yes, some people have a strict zero starch policy (I do at the moment - any little bit I eat has an painful effect on me)

5. Yes, some people only reduce starch and seem to find benefit. Some find once a strict policy of zero starch gets their AS into remission, then a Low Starch diet can be followed with caution.

6. Yes, many say that going starch free reduces pain and stiffness to a point and dairy makes up the difference.

Some also cut out sugar.

These are just my thoughts - I am open to correction if anyone thinks I am off the mark!

I have picked up that questions about diet made in the diet section will be well recieved, don't worry.

I think that dieters are in the minority as far as treatment options for AS go. It certainly sparks quite a debate. But I think the important thing is to find something that works for you and not worry about what others think (I mean others in general - family, friends, doctors whoever) whether you choose diet, medication, alternative therapies or a combination etc.

When you have an incurrble chronic condition, I guess there is a lot open for discussion and speculation.

Hope you get some more interesting replies than mine!! Lol!
Take care and happy researching

I am doing NSD for two month, and some of my answers are based on the general impression I have from everything I've read so far from other people experiences.


1. Not sure, even if Dr. Ebringer research is the one that comes up.

2. Not sure, but I think it was not accepted

3. Yes, many people have had very positive results with the diet

4. Yes, diferent bodys, diferent needs, diferent reaction. This doesn't seem to be forever. After the gut starts to heal, some starchy foods can be tolerated usually

5. Yes, again, it depends on your body, and maybe on how advanced the desease is. Some people only cut some starchy foods with good results.

6. Yes. Many people are allergic to dairy (not only people with AS) so avoiding dairy can be helpful if your body is a bit lazy with lactose. Same with sugar. But I guess one will never now until the body is pain free, so it's all about testing.

Hope it helps

1. FALSE: Numerous groups (Ebringer included) have found the association, with increased levels of Klebsiella in the stool, raised anti-bodies to Klebsiella found ONLY when AS is active. There is only one group that failed to find the association on anti-klebsiella antibodies and they did not determine the disease activity of the AS patienst (same with 2 groups that faield to find it in the stool). Ebrigner and all the groups that have found the association all made sure the pateitns had raised ESR/CRP, in fact hey also tested AS patietns with low ESR/CRP(ie non active AS) and they do not show raised anti-bodies.
2.FALSE: All the papers published are in peer review scientific journals, what is true is that high quality studies on the effectivenes of the diet have not been done. This is becuase no one will fund it. Anti-TNF drugs are very very profitable. Ebringer has treated over 450 patietns at the AS clinic in London (until its funding was cut), he reports that over half of these no longer require medication. (Note his diet is far less strict the the carol sinclair version).
Points 3-6 have been covered already

meds treat the symptoms, the diet treats the cause (Klebsiella)

good reading is:
Ankylosing Spondylitis is linked to Klebsiella: The evidence Clin Rheumatol 26:858-864 2007 Ebringer A et al.

Akylosing spondylitis, HLA B27 and Klebsiella - An overview: Proposal for early diagnosis and treatment. Current Rheumatology reviews 2006, 2, 55-68. Ebringer A et al.

Ankylosing Spondylitis and diet: Ebringer and Wilson In: Food allergy adn intolerance 2nd Ed; Eds Brostoff and Challacombe

Good luck
Simon
PS I have all the literature, if you are in UK I can mail it to you
bilco101@yahoo.co.uk

Hello Bilco
Interesting to read your far superior knowledge to mine!
Didn't know that "peer review" was scientific journal! DOH!

Hey, Bluesinlondon:




This depends upon what a person calls "scientific." Non-scientists who are anti-diet try and use "scientific" criteria to dismiss the efficacy of diet in treating AS. However, a person with some scientific training and better to have some background in understanding Bayesian statistics (in this case subsequent observations continually alter the weight of conclusions, based upon original rigorous testing), better appreciates the nature of the data at hand.

The fact that Giraud Campbell, D.O. did not call his regimen "No-Starch" (and he treated "Marie-Strumpell's" patients), does not mean it was not NSD. His keen observations "unscientific?" "anecdotal?" But it was Professor (in this case an instructor of instructors of physicians) Ebringer who later came up with the explanations.

Subsequently and fully independent of Ebringer were Carol Sinclair (treating IBS although this was her main feature of AS), Jackie LeTissier (using "Hay" method of food combining), Dr. Jean Seignalet, also successfully treated AS with diet, and there are even many others beyond these.

Individually, these are "claims" but pieced together they are certainly better "scientific" proof than serendipity. Professor Ebringer's work is making it into the textbooks, so eventually the medical community will be more familiar with diet related to AS, but it will take Max Planck's axiom to fix things--"A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die, and a new generation grows up that is familiar with it."




False. All of his published papers have been peer-reviewed to be accepted into the best medical journals of our day. His opponents publish their detractions in glossy pharmaceutical industry-funded publications that are named and "look" like real medical journals but are really faked stealthy advertising. No peer review of opponents to diet.

He has probably published ten papers on primary diet in treating AS and had references to diet in over sixty peer-reviewed and published papers.



Yes. Regret some of them leave KickAS as they no longer "need" us, but we have some of their success stories here, thanks to Tim.



Not necessarily. I was one of those strict people at first, but found what "works" by testing Ebringer's assertion--that a bacterium is the cause of AS. ANTIBIOTICS work, fasting works. I never thought that in this lifetime I would find the answer as to why long-term fasting always took my symptoms away or especially how fasting could ever be related to antibiotics.



For everyone with AS, merely reducing the amount of starch will help, albeit whether it is "perceptible" is another story. When there are actual numbers (ESR for example) that can be read, it takes some of the subjectivity away.



For some people, until the tract is better healed, (and these are usually people who are very sensitive to any level of starch in their diets), they do not handle more complex sugars like lactose and galactose because these are similar to starches and enter the bowel so the bacterium can feed upon these just as well as starch.

I was in this category, and got my AS fully under control without any drugs (no antibiotics, also) using strict NSD plus dairy elimination.

The caveat is that I had previously used antibiotics and purposefully taken down bacterial colonies, so my long-standing AS was in a state of 'deconstruction.' This is one reason I believe that everyone with AS >5 years duration should be treated with bactericical agents while being strict with starch-exclusion (so that resistive strains are not "selected-out"); it takes down colonies that can exist outside the intestinal tract, perhaps even to the extent that a constant flux of AS-genic bacteria are released (dead) and trigger a reaction that is independent of diet.

WELCOME to KickAS,
John

ASking questions such as you ask is a great idea. Nobody should accept something at face value and should thoroughly investigate a treatment option before they start it.

Personally I am not waiting for the medical community to "prove" something to me. They simply are not interested in most treatment options. I work in a major hosptital and witness the training doctors recieve. It is very strict, very fact based and very drug oriented. They then reguritate this back on society and call themselves the ultimate experts.

The fact is Rhuematology as it stands is simply a symptom supressor. The more you visit the doctor, the more drugs you take the sicker you will be. You may start out with arthritis but end up with much worse.

Dont get me wrong it it wasnt for TNF inhibitors I wouldnt be standing tall today. But like most drugs they have stopped working. Thankfully I believe TNF inhibitors are much safer on the body as a whole then NSAIDS or steroids. Those drugs cannot be taken for long periods of time. They are simply not specific enough.

Those that take responsibility for their own health will experiment with different treatment options. The NSD diet is proven to work from people who follow it and as John has pointed out it has scientific backing.

Keep asking questions though. Through the process you will get the answers you feel comfortable with.

Well thanks everybody, I think this has cleared a few things up for me, and hopefully for others too.

Just to recap/update then...

1. A number of research groups have found a connection with Starch and AS that suggests NSD/LSD could be beneficial to sufferers.

2. These groups have published their findings in credible peer-reviewed scientific journals.

3. There has not, as yet, been a sufficiently 'high quality' scientific study to put the debate beyond doubt.

4. There is substantial personal testimony, on this forum and elsewhere, to the effect that NSD/LSD has helped sufferers, and some people also assert that eliminating diary has also been helpful.

Is this a fair summary of the situation?

for me it is.