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#465603 - 03/25/12 05:03 AM Re: Failures of NSD/LSD ? [Re: pspondylitis]
chicharito Offline
Apprentice_AS_Kicker

Registered: 11/02/11
Posts: 95
Loc: Mexico
Originally Posted By: pspondylitis
Originally Posted By: SJLC
[quote=Dotyisle]
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.


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 ?


I don't know exactly how it works, but it works.

I believe John could explain it better, but if I had to give it a try, the answer to your question would be like this: the Klebs might detect the starch (too little for you might be a world of food for a colony of bacteria) and produce the enzyme to digest it; the enzyme is detected by the immune system and it produces a 100% full response to it, because it's still in overdrive.

Or it could be 100 times more complicated or in a 1000 different ways.

Give it some time. If saying goodbye to starch is too much for you there are some biological drugs that help many who don't want to stop eating the way they do.

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#465607 - 03/25/12 05:42 AM Re: Failures of NSD/LSD ? [Re: pspondylitis]
jroc Offline
Commanding_AS_Kicker

Registered: 10/30/08
Posts: 682
Loc: New Zealand
hi pspondylitis, i admire the scientific rigour that you bring to your investigation of diet and AS. you may find this post interesting - http://www.kickas.org/ubbthreads/ubbthreads.php?ubb=showflat&Number=465605#Post465605

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#465608 - 03/25/12 06:09 AM Re: Failures of NSD/LSD ? [Re: lar84]
pspondylitis Offline
Journeyman_AS_Kicker

Registered: 03/18/12
Posts: 101
Originally Posted By: lar84
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.


I think that there is no doubt people with different pain levels on this forum. However, I am quite sure, that all have or have had significant pain, otherwise why bother registering with a forum! What brings us here is the debilitating effects of this disease and our desperate attempts to find help. All treatments, medical or alternative, rely on risks versus benefits or put in another way, suffering due to diet versus suffering removed by diet. The problem for many I suspect, is that they are wary of how much benefit the diet actually brings.
_________________________
Most likely psoriatic spondylitis. HLA - .

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#465610 - 03/25/12 06:19 AM Re: Failures of NSD/LSD ? [Re: jroc]
MollyC1i Offline
Very_Addicted_to_AS_Kickin

Registered: 01/21/04
Posts: 8600
Loc: Brittany, France (since Nov 08...
Interesting post jroc - now waiting for John (DragonSlayer) to pop in -
_________________________
MollyC1i - Riding OutAS

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#465612 - 03/25/12 07:15 AM Re: Failures of NSD/LSD ? [Re: MollyC1i]
DavidP Offline
Warrior_AS_Kicker

Registered: 09/24/07
Posts: 468
Loc: Sale, Victoria, Australia
A recent 2012 paper entitled 'The interplay between endoplasmic reticulum stress and inflammation'

http://www.nature.com/icb/journal/v90/n3/full/icb2011112a.html

"Bone and joint diseases
The main interest around ER stress in bone and joint inflammation centres around misfolding of MHC protein encoded by the HLA-B27 allele, which is tightly linked to the development of ankylosing spondylitis. Whilst originally this association pointed to the development of autoimmunity against HLA-B27 presented peptides, attention is now turning to the role of ER stress in the development of inflammation, which in this disease often also involves the intestine. Misfolding of HLA-B27 in macrophages activates the UPR, resulting in increased production of IFN-Beta, IL-23, and if ER stress is more severe, IL-12. Thus it appears that misfolding of HLA-B27 may be central to the development of this auto-inflammatory disease with other environmental and genetic factors determining whether a HLA-B27 individual will develop disease. Given the prediposition to misfolding, and the links between inflammation and ER stress, it is interesting to speculate whether infections, perhaps in the gut, could be important environmental triggers for the spondylarthropathies."

And elsewhere "The intestine, lined by an enormous surface area of rapidly renewing epithelium, is exposed to complex populations of microbes, and therefore has a well-controlled continuous mucosal immune response to non-pathogenic microbes while retaining capability to respond strongly to pathogens. The incidence of IBD, Crohn's disease, and UC, is progressively increasing in the developed world, paralleling the increase in autoimmune disease. Although the major target of immune responses in IBD appears to be the gut microbes rather than self antigens, IBD shares many immunological and genetic features with autoimmune diseases. Genome wide association studies have identified many common alleles with typically weak contributions to IBD risk, many of which overlap with other auto-inflammatory and autoimmune disease."
_________________________
Dx Oct 2006 B27+ undifferentiated spondlyarthropathy (uSpA) with mild sebhorrhoeic dermatitis and mild Inflammatory Bowel Disease (IBD) controlled by NSD since 2007.

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#465617 - 03/25/12 07:38 AM Re: Failures of NSD/LSD ? [Re: pspondylitis]
Alinus Offline
Magical_AS_Kicker

Registered: 01/09/10
Posts: 795
Loc: Romania, Suceava
in my opinion for most of us there is more than starch involved. and there is more than Kb involved.
cutting starch though improved my condition.

i believe that with AS we enter a chain of causality that triggers more than anti-kb response from us - take beer for example - there's no starch in it - but i do flare - always - if i have it. what's inside beer? can yeast cause trouble? so fast? 12-24 hours? probably... because i am always reaction to it. always

take sugar - that for me always causes a flare. take oranges...flare.

it's not always starch i believe and i have more than a dozen NSD legal foods that will put me in a flare. but the biggest flares i've had - both gut and joints - came from it.

the problem is you cannot approach this diet only with scientific methods. no starch it's not a one for all method, to be measured in statistical data. you must tweak it to your needs. if you will spend some time reading this forum you will see that there's not one person who uses the same diet. but the main principle remains - to lower starch (there could be a point in the fact that in lowering starch you will be eating more "natural" non processed foods, no additives and maybe this is helping too).

you're not the only one who did not respond to diet immediately. some did respond after some time- weeks, months, some never did.

@jroc.
i've read your (redirected) post just after i've written mine. you always have the skill to put in better words and back up with data what i was trying to say based on my personal experience:)


Edited by Alinus (03/25/12 07:44 AM)
_________________________
33. Some rheumys say AS stage 1-2 some others say USpA
Also UC - rectocolitis.

UC curently in remission since feb 2011.
AS/USpA remission march-aug 2011. Flare - sept-nov 2011 (antibiotics). Remission now...

Modified NSD/SCD. Cook your own !
____________________________________________________________
Mesalazine-Salofalk 1000mg/day
Cymbalta - Antidepressant-30 mg/day. Now 30 mg once in two days and hoping to drop it in half a year.

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#465620 - 03/25/12 08:12 AM Re: Failures of NSD/LSD ? [Re: DavidP]
MollyC1i Offline
Very_Addicted_to_AS_Kickin

Registered: 01/21/04
Posts: 8600
Loc: Brittany, France (since Nov 08...
Interesting link David - in fact, have posted comments to one amazing glaucoma group, FitEyes - what a source of information. One of the ophthalmologists in this particular ophthalmic field, who is a member of the group, finds that many of her patients have/suffer from an autoimmune disease - this is apart from the 'usual' diabetic retinopathy.

Apart from Uveitis, rheumatologists do not seem interested in eye problems... I think it would be of clinical benefit for rheumatologists to record ALL eye problems with ALL their patients - that way a 'positive' (or otherwise) linkage could be determined with the ophthalmologists. Yes?

(I am going to suggest this with my two most favourite rheumatologists - both UK. But anyone else?)

Molly C (France)
Keeping on Keeping on (as we all do - innit?)
_________________________
MollyC1i - Riding OutAS

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#465624 - 03/25/12 11:39 AM Re: Failures of NSD/LSD ? [Re: pspondylitis]
DragonSlayer Offline
AS Czar

Registered: 09/05/01
Posts: 5129
Loc: So Cal (high chaparral)
Hi, pspondylitis:

Quote:
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


Nobody is bashing "science!"

We might complain a bit about physicians, who are NOT SCIENTISTS, btw (despite the 'doctor' moniker).

It is science that explained the connection between diet and AS. Until then it was merely anecdotal. And science explains the mechanism behind AS, whether non-scientists (doctors) accept the facts or not.

We have used scientific methods to great advantage, and will continue to do so.

Let me give You a story about a dog with AS: Diagnosed with canine ankylosing spondylitis by a brilliant veterinarian, but the dog owner knew exactly what to do, and changed that dog's diet. Dog got better. Was that the vaunted placebo effect?

I do not deny the placebo effect is a real thing, but in the case of diet, I feel there is an opposition effect--NOBODY wants this thing to work, and we secretly HOPE IT DOES NOT WORK and that we can claim "Yeah, it may work for some but...it did not work for me!"

We who were at the end of drug use, and at the end of our vision, have had to work, sometimes extra-hard, to make the diet work for us. It is not easy, but I took that a step further and especially in order to prove or disprove for myself, the germ connection. Early into strictest diet I began taking antibiotics and within four days (an important cycle in AS) I knew that this combination of therapies was the right and probably best way to treat this disease.

If You are restricting Your diet so much, You perhaps have not studied what can be eaten on NSD. I suggest You order Carol Sinclair's book and if in a flare, You could fast while waiting for delivery.

It is far better to DO than DEBATE; these are all questions we each have for ourselves--a part of our inner dialogue that is answered quickly, once we begin to observe our own results.

Good Luck to You,
John
_________________________
HANLON'S RAZOR: Never attribute to malice that which can be explained by stupidity.

Important AS Resources

RED ARROW --> Philippines

Professor Ebringer: On Diet and AS;


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#465625 - 03/25/12 11:41 AM Re: Failures of NSD/LSD ? [Re: pspondylitis]
Jaybird Offline
Silver_AS_Kicker

Registered: 03/23/07
Posts: 1458
Loc: The Matrix
pspondylitis,

I can only sit here in awe reading this:

Quote:
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 ?).


Quote:
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).


Granted, two different entities, but it is confounding that these statements appear as part of the same argument.

Additionally, Google (or any other search engine) doesn't trump everything. That vanilla powder could very well have had something starchy added to it, therefore the sensitive individual reacted.

Make sure your bacon doesn't have some sort of starchy additive. That will stifle your progress, no doubt. The grapes may be problematic too if you are sensitive to sugar. A dash of humility may not be a bad addition though.
_________________________
Kind Regards,
Jay

Almost all of us long for peace and freedom; but very few of us have much enthusiasm for the thoughts, feelings, and actions that make for peace and freedom. - Aldous Huxley

Was the government to prescribe to us our medicine and diet, our bodies would be in such keeping as our souls are now. - Thomas Jefferson

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#465626 - 03/25/12 11:56 AM Re: Failures of NSD/LSD ? [Re: Jaybird]
pspondylitis Offline
Journeyman_AS_Kicker

Registered: 03/18/12
Posts: 101
First of all, let me apologise if you felt that I was trying to humiliate anyone. That is certainly not the case. All I am trying to do is to try and understand this diet and ask questions. Medical/ scientific progression happens only with questioning. Sometimes this may appear as being condescending. I am just trying to understand how minute quantities of starch can destroy the diet.
_________________________
Most likely psoriatic spondylitis. HLA - .

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