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

Hi to everyone

I am a member of an AS rehabilitation group. I have spoken to many of the members and am puzzled by the different reactions to the subject of diet. Those interested are a minority, albeit often a very passionate one. Among the rest are those who have had AS for tens of years and are adamant that diet makes no difference to their symptoms. I am convinced that if their experience of reaction to diet was anything like mine they could not be unaware of its significance. I think some, at least, are just different.

If I am right, the AS grouping includes 2 sub-groups which have totally different reactions to diet (echidnas with other ant-eaters?). Clearly any study of reaction to diet which lumps the two together will produce no meaningful results. Such studies could then be used to dismiss diet as not significant in AS as the medical establishment does. For the same reason the statement on the AS Dietary Primer page on this website that "...a diet low in starch..... will likely become the preferential treatment (of AS) in the near future." is unlikely to prove true.

It is obvious that a similar study of Kickas members would produce a totally different outcome. As long as the 2 sub-groups described above are differentiated by symptoms only the medical establishment will not take diet seriously. On the other hand, if the diet sensitive AS sufferers are proven medically different in some way their separate study would then be justified.

What better study group would you find than Kickas members? If the administrators of this website, with their Email address resources, could be persuaded to conduct a comprehensive survey of AS members it might just be possible to identify such a medical difference.

I look forward to any comments.

Wally.

Hi Wally,

That is a very interesting theory you have and have wondered that myself. Things I was thinking might make a difference if the diet works or not are. The diet appears to work like magic for some and others it is less than amazing.

1. How long you have had untreated AS

2. What joints are affected?

3. What medication you have taken in the past and for how long?

4.What caused your AS to become active or more active. eg> surgery, hormones, trauma, gardia, etc.

5. How long you stayed on the diet and how strict you are with it.

6. Do you have food sensitivities that you are aware of?

I am sure there are many more ideas out there but I think you have asked a good question because maybe if the reasons could be identified it would help the people who the diet doesn't help.


There is no drug stronger than a good attitude.

Hi, Wally:

I have thought about this quite a bit, but have come to a different conclusion based upon my axiom that once in full flare nothing can make it worse. It takes ten days to clear the system of the offending IgA; most people's 'event horizon' is much closer. How many ten day periods does anyone accidentally go without starch? I had the advantage of having fasted for many days (up to 20) and it takes patience. Most of us are not experimental types and all the protesters have to do is ask their doctors about fasting--they will hear the lies they want to hear; the white stick brigade marches onward--destination doesn't matter. The individual might conclude, as an addendum to the Paleolithic diet, that people evolved feasting and then fasting; everything has a natural cycle.

In 20 years and over 450 patients Ebringer did not find one person with AS that was not caused by Klebsiella pneumoniae and those on his unsupervised "eat whatever you want but try and follow my London AS Diet" had a greater than 98% success rate (by "success" I mean that those with elevated ESR had significant lowered values after 9 months--the slope was in the right direction, but some were still too high to actually notice much improvement). Within the kickas community, many people who are B27 negative have found that reducing starches improves their condition and also people who's ESRs do not increase have noticed some improvement in symptoms on the LSD or NSD.

Those who do not respond well to total starch exclusion seem to have candidiasis as a severe complicating factor. There may be other factors, but that is probably the most common. Most cases of this are subclinical, especially in the context of suffering from AS as a primary condition.

A valid experimental design could not be achieved using a subjective poll; there are too many flaws.

What you have found are people who have already been messed up (by a combination of drugs and AS) and just feel that food is the last good sensation they get from life. Much of their pains are skeletal, and their desire not to change is the result of recalcitrant thinking and attitudes which caused some of the original problem in the first place. There are some people who will not allow themselves to be helped by diet and there is not a thing you can do to change that fact; it is Newton's Third Law (or karma) perfectly fulfilled by the First Law (inertia). Do I know this? I was there myself and recognize it better after many years of suffering.

I hope everyone gets better, but I understand that some prefer to wait for that magic pill that can reverse improper lifestyle choices. And I do hope that pill comes in time, while I know that everything comes with a trade-off whether there are obvious or intended consequences or not.

Best Regards,
John

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

Hi Wally,
I like the comprehensive survey idea. If kickas.org organizers could not conduct the survey, I can spend some time and organize a web site. As Deborah/John pointed out, we need to be very specific in the questions (to minimize any opinion/bias):

Just a thought for the format:

Most recent flare:
Lab Diagnosis: AS ( SI Fusion level, kp level,) IBD, gut inflammation, thyriod disorders, MS, ...
Duration: days ...
Pain locations: back neck shoulders hip knee foot ankle ...
Range of motion(?) Touch feet, Run, walk, neck movement, ....
ESR reading before: after: ...
CRP reading before: after: ..
TSR reading before: after:
Candida, yeast:
kp:
BP:
Cholestrol:
.....
. . .
Diet NSD LSD Atkins fasting xx days None
Medications: NSAIDS anti-TNF ....
Supplements: omega-3/6, ginger ....

Prior flare up:


Family history:
....


Rgds.,
Krishna

Since the medical establishment does not take me seriously I don't see why I should take them seriously on the topic of diet.

The other problem is that we basically have a very....obscure disease. Or rather, a complex of obscure diseases, some of which will respond better than others to diet. I think the diet won't work without antibiotic therapy. I think also there is more than one trigger for the disease.
Nobody's going to get any prestige from fixing us. And no drug company will ever profit.

Look at Type II Diabetes (adult onset) for comparison. Oh, the med-estab just falls all over themselves on that one. ERLWAE, as Rox says, erlwae! erlwae! Eat Right Lose Weight And Exercise. What's the difference? There's enough of them seen that they wear their disease on their sleeves. And their thighs. They wouldn't give a rat's patootie if there were only a few hundred diabetics in this country. What if Mr. Average Physician only saw one type II diabetic a year and one year it's a chubby one and the next year not? Do you think he'd be able to figure out it was diet related?

Heck no!!!!

With my family history,they do test my blood sugar all the time, and they never find a thing wrong. Yet I have never been asked the $10 million dollar question...what are you doing that prevents you from developing the disease?

I looked at the risk factors when I was much younger and decided to go for the "healthier" lifestyle. Do I think every body can do this? No. You have to get pretty sick, and oddly enough, it helps to have bad role models sometimes. But some people mistake my lifestyle as a moral judgement of theirs, which I don't quite get, when they learn I do not drink alcohol or smoke. Oh geez, I can't do that crap with this body I'm stuck in.

If someone wants to compare family members, I have a smoking and drinking sister who is developing IBS but has not gone diabetic yet but has been warned by her doctor that she will eventually. She's also normal weight, like me. But I doubt that we are "sexy" enough for the medical establishment to be interested in as to why one of us has a piece of junk for a cervical spine and the other one has a cranky set of intestines. Ya know, gotta cure cancer and Sars and all that good stuff first.


I am just very happy I am sensitive enough to the sensations created by my body that I could tell there was a link between my food choices and my physical reactions before I found this site, I just could not make sense of it. I knew I reacted very poorly to sugar and fried foods. I suspect that most people on prescription strength quantities of NSAIDS are rendered oblivious to this. I also suspect there is a strong cultural bias against changing diet for a lot of people. I respect that. Your tastes for food are created at a very young age, in fact, they may be influenced by what your mother ate during pregnancy. The problem with doctors is that they are the survivors of the winnowing process that is our culture. Do you think there are many doctors that get sick on DOUGHNUTS? Have neck lock from a bag of french fries and a cheeseburger on a white bread bun? Since almost none of them have or ever will, why should any of them believe us? Doctors are, from their incredibly busy schedules, my guess, not exactly the poster children for healthy diets. They thrive in spite of them.

After all, they learn what they think from other doctors and the drug manufaturers, not us, and what they eat does not make them stiff or cause their eyes to inflame.

I have been pondering this quite a bit lately and sorry to ramble on for so long.

I recently received an e-mail from someone who had suggested to the administrator of the National Ankylosing Spondylytis Society (UK) web site that he should start a new forum for diet; the previously polite correspondence came to an abrupt halt, he received no reply! Not because the doctor who advises NASS is indifferent to diet, but because he seems to be a long time opponent of the starch free diet. The controlled clinical trial will be over dead bodies . . .

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

PS - I must apologise, I have just re-read the posts and the administrator did reply. He said that other scientists had not been able to verify Ebringer's scientific results, which is a lie, they have been repeated in some 18 different countries.

Edited by bilko on 11/20/03 03:48 AM (server time).

Any rhuematologist I ever mentioned the NSD say they do not promote excluding any one food group from your diet. To this date I have seen 4 rhuematologists. And I have excluded two food groups so I just keep my mouth shut, especially since I do not have the results to back up my claim. The only exception to this is my GP who encourages everyone, not just AS pts. to give up all starchy food. He is a step ahead them all. I still can't convince him of the kleib theory though.

There is no drug stronger than a good attitude.

I have to say I stick around this site cos there's some interesting info gets blown about.
I'm not suffering with AS but possibly do have IBS and some form of arthriticy condition..don't know. For me it's no longer useful to label it... I see it as me being out of balance and know there are several factors which have brought this about, the effect being an inability to absorb starch... and consequences if I do try to! So I'm just in search of a means to rebalance myself...and thereafter to see whether I can then absorb starch or not.

Point is, there are many variables that go to make up a healthy state and many that can precipate an out of balance one, and as John said, everything is cyclical...and takes time (and I'd add rhythmical). Just how any of us is supposed to hold all variables except one..the test variable, constant over a prolonged period...in order to deduce a 'scientific' connection between diet and AS or diet and illhealth generally, is well nigh impossible. We can't hold genetic susceptibility constant, or the myriad facets of lifestyle.

The shere volume of folk...ever increasing... who have linked diet to their condition, and specifically starch, to their illhealth... is 'proof' enough, imho. What the powers that be should be looking at is these numbers...and trying to deduce a common denominator... one which interferes with the life process as a verb, not the factors that seem to affect an almost arbitrary delineation of 'disease types' into specific boxes. This kind of classification is useful as a jumping off point in order to see the wood for the trees. But where is the coming together, the cross referencing...between specialists in different fields and those 'disease types' ? It wouldn't surprise me if that elusive common denominator turned out to be starch (amongst a few others).

What is it about starch... not just the chemical analysis of it virgo non-intacto, after it's been investigated in vitro... not just its normal break down processes when in contact with human digestive enzymes etc (there are 17 steps to this- so lots of possibilitites there for things to freeze up)... but the whole picture including bizarre ideas like it's resonant frequencies.

My twopence.
Sue


PS Just posted this and saw Deborah's message...Deborah...your GP advises ALL patients to give up starchy food?!...VERY interesting...why exactly? Is it his/her theory or where does he/she get the info? Would LOVE to know.

Edited by uksue on 11/19/03 08:53 AM (server time).

Hi Deborah

Thankyou for your suggestions for a survey questionnaire.

I'm glad that someone basically agrees with my suggestion. Along with Kickas members there are also people with AS who are not diet sensitive. There are those in both groups who pour scorn on the other.

On Monday night I had dinner with 8 other AS sufferers, all of whom had been diagnosed many years before me, and I was the only one who believed in diet as a factor in AS. I have not spent any time researching medical studies into the effect of diet on AS so I could not argue when I was berated with tales of such studies which could not establish any link. Of course if this is true it would fit the 'two sub-group' model which I suggested. Along with those hostile to my position were moderates who accepted that I was different to them but were convinced that diet was not a factor in their own AS.

My own condition varies from day to day depending on what I eat and the connection is fairly obvious. However I accept that for some the link may be more subtle.

Regardless of who is right, it still appears useful to have a survey.

Wally

Hi John

I see that you are firmly in the 'We are right and they are wrong.' camp'. I just find it difficult to accept that the only difference between the two groups is the stubborness of the majority to test the AS-diet link. Is Ebringer's study supporting the LSD the only one on the subject. Are there not studies failing to establish the link thus explaining the lack of acceptance by doctors? I intend to do some research on this subject when I get time.

I was not suggesting the survey be subjective only. Medical information such as blood group and results of any tests taken should be included. Ideally such a survey should be guided by a medical professional, perhaps a young one prepared to question the established dogma.

Wally