Kickas.org Forums Treatments, Drugs and Alternatives NSD and diet-related; Two AS Sub-groups?

Wally as Sue says, the variables are many and i think you are an exception - most people do not have the handle on their reactions like you and zark. I was lucky to recognize the Pizza - iritis connection for myself, but it still took me ages to focus on it as a healing exercise.
Unfortunately, for most people the drugs (NSAIDs) actually do work and symptoms are masked - they only see what they need to address.
Of those eight at the table, one says he has tried it (Jim) but i'm not sure with what conviction. There are so many obstacles and automatic disbelief that it takes self indications like yours and mine, blind faith or simply last chance motivation to actually give it a good tryout. Many people feel they are so disadvantaged by having the disease in the first place that they are simply not going to sacrifice any life style value at all. Like this...(200kB)
A student here struggling to finish his degree told me his health story "you probably don't know about it - it's called spondylitis" Surprised him a little. Anyway he is young, big, strong, poor and lives on pasta and rice dishes with a little bit of meat or veggies for flavour. He said he simply couldn't afford my diet of fish/chicken/fat with veggies/condiments only there to provide vitamins and enzymes, enzymes, variety and spice - no cheap energy of complex carbos.
Starch is cheap.
(and nasty)
I wouldn't like to say there's two groups and like John i'm sure most people will get some benefit from no starch, but what some don't find are all the other things that affect them and exactly what they are prepared to do or sacrifice to fix it.
As you know i'm keen on a survey for things objective like blood type, B27 status, B7 status would be handy too, family history, gastric history, infection history.
Oh and a top to bottom photo of the entire gastric tract......

Ted

Wally so long as you're gonna think in terms of us and them it doesn't help anyone.

Deborah,
I recall someone suggested that dinosaur wasn't on the stone age man diet!

This thread is a little confused because the suggestion that the diet should work for us follows from the scientifically / experimentally established knowledge that AS patients have elevated levels of klebs specific IgA, that starch foods are inadequately digested and that klebs just love it. The scientifically logical progression is to test this suggestion with a controlled dietary trial, but this the funding agencies have declined to do. The science is good so far, but until the trial, people can say, like kids, 'it ain't proven', 'there is no proof' etc. That is what the rheumies bleat.

So I think it wrong to suggest at this stage there are two distinct AS sub groups because then you are introducing another unknown etiology to confuse things when there are simpler explanations why diet doesn't work for a minority, such as GI tract damage, candidiasis and misdiagnosis. If the trial didn't give a positive result then OK, look elsewhere.

This we prescribe though no physician . . .
Our doctors say this is no month to bleed. (Rich. II)

John,
Sorry for the possible confusion. I more than completely agree with you that there is a recent rise in the consumption of refined grains in the Northern European group. I had in my mind the findings of the oldest AS fused spines in the early agricultural South American civilisations some 6000 years ago and the rise of agriculture that generally started some 8000 years ago. It would be interesting to investigate if there is a rise in AS (and arthritis and gout)in the Northern European group based on archeological finds in more recent times. The few articles I found seem to point in that direction. It should also be interesting if there is a rise in sufferers in recent Dx's but I'm afraid that the problems in diagnosis of AS are so big that no reasonable figure could be gotten out of that.
Gerard

"That we become twice as old now as a century ago is the work of plumbers, not doctors" -Midas Dekkers-

Hi Wind_rider

I am sorry I didn't make myself clear. You described what seemed a direct cause and effect scenario. You took something - a bag of french fries - and then got neck-lock. The point I was attempting to make was that the french fries-flare connection, perhaps repeated many times over years for someone with a long AS history, would surely be obvious. There may be some Kickas members whose change in symptoms due to diet is subtle and perhaps not easy to identify. In my case it is so direct as to be obvious. I thought you were describing something similar but perhaps I was wrong.

I don't characterise those non-diet AS people as stubborn, unintelligent and ignorant. They have a sickness and would want to do anything which could relieve their symptoms just as would the diet-AS people. It is just they respect their doctors' opinions that diet is not a major factor and they see no evidence to contradict this. I believe if they had the same experience of taking certain food and getting a flare as I do they would soon see the link. My assumption was that the fact they saw no evidence to support diet as a factor was proof they didn't have a similar experience (I incorrectly used the word 'symptoms' here).

I also do not believe the medical profession is entirely disfunctional. We all know of historic examples when the current teaching on a certain illness was wrong but new research, new medical minds etc. eventually found the truth. I am sure there are young doctors and medical research scientists who would love to make their names by proving their profession was wrong by establishing the diet-AS link if they could.

I don't pretend any medical knowledge. My suggestion of 'two AS sub-groups' is based on judging the players involved and logic. It depends on -

- believing those (the majority) who see no diet link after many years with the disease. They're not all stupid.
- the assumption that if the link was as universal to all AS patients as many claim by now it would have been accepted by the medical profession.

The alternative argument - that the AS-diet link is common to all AS sufferers - also depends on assumptions.

- That the medical profession does not have the ability to recognize what is claimed is self-evident.
- That the non-diet AS people are not as clever in reading their bodies as Kickas members. They can live with the disease for decades and never notice the connection.

You may well be right. I just don't accept the certainty of your case. What if the vast majority of Kickas members turned out to have, say, blood type 'A'. Who knows what a survey would show. This website has brought together a unique group of people from all over the world because of their common disease and the belief in the AS-diet link. What else do they have in common?

Hi Ted

Please see what I wrote to Wind-rider. It's not that I don't believe your arguments. I just think there has to be some uncertainty.

On the one hand you have the medical profession and the majority of AS sufferers who think we are all a lot of nutters. On the other you have a minority who believe the medical profession can't accept the obvious and who also think the majority of people with AS are not as smart as they are. The 'Two AS sub-groups' suggestion is something of a middle road.

OK so the diet-AS connection is not as obvious in all AS sufferers as it is with me. You know there are those among the majority who now do not take NSAID and yet still don't see the diet-AS connection.I think it is a bit arrogant to assume they are all wrong. My way accepts both.

If I shouldn't generalize on my experience perhaps you shouldn't generalize on your poor student. Food is not the most expensive item in most peoples' budget. Paying more for food to improve your condition is something the majority would go for. I still think the main reason the non-diet people don't accept the AS-diet connection is because they believe their doctors and don't see any contrary evidence.

Wally

Hi Wally,

It's not just diet that can be a relevant-to-NSD and contentious-to-everything issue here Wally - try looking at exercise compliance - it doesn't always happen. Ditto smoking, which tons of research has shown to exacerbate chronic pain.

(Health) Locus of Control is a huge factor, and probably the only one that would *neatly* result in two distinct groups. (Helpful Hint: don't even go there - not unless you want your AS flamed big style )

Compliance to the NSD would be a big issue in researching it, and something that difficult to factor in. Whilst I'd be happy for them to feed me through a nasogastric tube maybe even parenterally, sod it, bung a catheter in as well whatever it takes to get some credibility into the results....but at the end of the day the sad thing/fact of the matter is that even if research showed 100% unequivocal results for the diet and it was promoted Atkins-style with NSD products/shops a-plenty and with Tampax-style advertising of the fact, there would not be 100% uptake of it.


Well, I'm getting a bit distracted now by imagery of an NSD advert - thoughts of Bilko rollerblading in white pants, or would it be abseiling?? Sorry Bill - but at least I didn't say hotpants )

Take care,

Jan

The first and best victory is to conquer self

— Plato

Hey, Ted:

Let's get your impoverished student fasting; it is the ultimate for both savings and saving from AS symptoms. Will send you new chapters on topic if you want. Before the NSD I got myself into remission quite regularly by fasting--shame on me for ever going to those doctors! Certainly, it takes more dedication than average but one cannot really afford, no matter how impecunious, to allow AS to cause the still more expensive problems later on--pay a pauper's pittance now or a regal ransom later. It would be instructive to meet us side-by-side (I use George and myself; I'm a hunchback with zero neck articulation after more than a decade more of starch ignorance than George, who is thankfully almost normal and plays golf nearly every day). It helps to have the comparative examples.

Great cartoon; I'll certainly eat pizza before going to the gallows

Best to You,
John



A punk stopped me on the street and said: "You got a light Mack?"

Hi Wally and all,

I thought it may be interesting for you to hear and possibly(?) even understand my rational as one of those non-diet AS sufferers of 22 yrs.

I am not a dis-believer (as some may think), but to date I have not tried lsd/nsd. When I first came to KA and heard of this no-starch theory I admit to being initially pretty sceptical. The more I read the more I became curious as it seems there are a significant number of people who claim an obvious benefit. I figured something must be happening or why would so many be sooo adamant!

At 21 y/o, I was certainly not educated enough to challenge the considered opinion of a medical specialist, but now at 41 am more that happy to quiz my Rheumy constantly and make him qualify his position and advice. I asked my doc if the bacteria klebsiella was the cause. He said doubtful,... but maybe. He said that 'most' of Rheumatology suspects that it will eventually come down to a bacterial cause but that for now, they do not know which one(s) are responsible. So I continued reading and learning.

Over the summer, John (Dragonslayer) was kind enough to send me more extensive reading material (thanks again John!) and again I took this to my Rheumy. He has gotten to the point where he expects packages of homework! We revisited the discussion on Dr. Ebringer and his papers and he said that his work could never be replicated... could never be proven to be true. He said there were 4-5 attempts in different countries, but none were able to replicate the results. He did make a point of saying that no-one has disproven him either!

So here I am. I've been on nsaids for 22 yrs. I can make no connection from food to flare whatsoever, at least without adopting the diet. If I eat meat and veggies only one night, then meat, potatoes, bread and pie with ice-cream the next,... I'm in the same amount of pain either way. I may seem worse after a low starch day and feel better on a starch-filled day. I believe John's theory... that once in full flare nothing can make it worse may exactly explain my experience. I can however notice a fairly immediate health benefit when excluding diary... which I occasionally do to alleviate sinus pain (especially when I have a cold virus). But this doesn't improve AS pains.

I am not a healthy eater but not a big junk-food junkie either. Most of my diet consists of starch. As I read about the foods you eat, I can't imagine there would be enough to sustain me. Unfortunately, I have never really liked veggies from a very young age and love cereals and breads. I don't eat very much pasta but love rice. Even the few veggies I do like tend to be the starchy ones (to my limited knowledge). I like potatoes, sweet potatoes, corn, snowpeas, squash, cauliflower, and I can eat a little bit of salad (lettuce, peppers, mushies) and force myself to eat a bit of broccoli occasionally. I don't like green as a flavour. Fruits are limited to bananas, apples, plums, melons, pineapple, but I don't eat much citrus and dislike most berries (except blueberries). I like most meat, but really dislike nuts. So you can see it would be extremely challenging for me to eat enough calories.

The obstacle that prevents me from trying even a low starch diet is that I cannot afford to lose weight. I've considered trying an apple fast (when meds fail to cover bad pain) but fear I'd lose too much. I weigh only 112-115 lbs, and I'm 5' 51/2" tall (formerly 5' 8"). Please don't jump all over me and say I will not lose because I do lose weight and far too easily, plus I already feel my weight is on a rather low-unhealthy side. My doc used to ask me if I was anorexic at every appt for years until I explained that if it were true, then I would've disappeared by now. The other big obstacle for me is that I "...just feel that food is the last good sensation I get from life." Okay..not quite... that's a tad exaggerated even for me... but it's close enough.

Anyways, thanks for listening!

mig

Mig, if you have been on NSAID's for 22yrs (a) that's a kind of miracle in itself and (b) it WILL have a huge influence of your gut healing. Also, if I remember rightly, you are an user/advocate of smoking. Can't remember if you exercise much (as in daily??)

(Remember *all* too well your opinion of nurses working with SARS patients - some of whom are suing your government - and may I wish all the very best to them - those that are still alive that is)

So no, you won't notice much difference very quickly if you change your present diet.

When I look back according to some ppl's calculations of success, I was well and truly made up when I got down to Co-Codamol TDS - I was honestly made up at this as I'd never managed it before and it was beyond my wildest dreams!!!

It went much further, and now I rarely have to reach for ANY analgesic....

But hey, how much is that to do with *expectations*?

I expected NOTHING and as far as I'm concerned I got EVERYTHING!!!

Forget diet Mig, if you want to see results quit the fags and get exercising in a pro-AS way as from TODAY - hey, you may even find the desire to alter your diet will follow quite naturally........

All the best to you,

Jan




The first and best victory is to conquer self

— Plato