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I think you're right. Testing for the Anti Kleb IgA is the crucial test. Testing the amount of klebs in the stool is not a very good test as an AS patient could have the same amount as a regular person (or much less if they are on LSD or NSD). It is the increased permeability of the gut that exposes the klebs to the immune system that is the crucial factor.

(%kleb in gut flora) x (%gut permeability) = IgA
This should approximate the level of disease activity. If it doesn't then the theory has some holes in it.

NSD can work for some
LSD can work for others
We have evidence that diet 'can' and 'does' work for patients (evidence here on KA in abundance)

Put aside the kleb, and the ESP etc etc. A 'detemined' study as to ITS 'working', that is: LSD/NSD diet *working*, would and of itself surely be the first step?

So. Define the 'diet' itself. Use broad base to define. Implement 'A' study under 'clinic conditions', for, say, 4 months? Observe. Document.

Difficult to do Molly as someone else said (I think it was Kat) unless you lock everyone up in a hospital for the time they're on the diet. You can't get a clinical study out of people feeding themselves.

In the minds of most Rheumatolgists the studies of LSD have been done and they have failed. Most of their income is derived from the ongoing monitoring of seriously dangerous drugs which disable/suppress the immune system.
No amount of further dietary studies will change their minds one iota.
Ultimately a irrefutable scientific proof of pathogenesis will show that at least for a proportion of AS patients a NSD will be efficaceous; but even then the medical profession will resist it because their number one priority is themselves.
The patients runs a distant second (or maybe last).
If it all possible I want nothing to do with them!

David

Hey Ianna
I read that NASS are allegedly money driven, but taking your money without asking is a bit much!!!!!!! LOL!
I'm sure it' just a mistake!

I'm sure it was a mistake.

Hugs,

Thats what they all say

Hi Wendy

I know what you're saying about the difficulties with clinical studdies - but other diseases are controlled by diet - take diabetes for example or even Chronn's (I have a friend who controls that by diet on the advice of her doctor). So why does everyone have such a problem with the effect of Starch on AS patients?

I saw a program on TV last week which said that the Kleb bacteria (as well as E-coli and some other bacteria) feed on undigested food in the gut. If it can be proved that Kleb feeds specifically on Starch - it is a known fact that Kleb mimics the HLA-B27 antigen and that a huge percentage of AS sufferers are HLA-B27+ - why is it so hard to make the final and logical step that a starch free diet could significantly improve the condition of an AS patient?

Not everyone who has diabetes can control it by diet alone - but many can. It makes me SO mad that the medical profession can dismiss something so important.

Anyone who has or knows anyone with AS or any other related diesease knows that just treating the SYMPTOMS of these diseases IS NOT GOOD ENOUGH! They are so damaging and quality-of-life threatening.

I went from being a 24year old CRIPPLED with pain to a 24year old pain free and completely mobile again within 3 months on the NSD.

It doesn't help everyone but it DOES help lots of people and should be taken seriously.

Sorry to get so crazy!! - But I am so passionate about this subject I don't know whether to scream or cry my eyes out with frustration!

The problem is, Tinkerbell, that not everyone has that kind of success going NSD. Some of us respond very well to a LS diet. Some don't respond either way. It's just like every other treatment for AS. I have no doubt that some people with AS have a kleb-related trigger, but I do not believe we all do. Nor do I believe that kleb p. is the absolute cause of AS. There are too many other variables, most of them still sadly misunderstood.

You have found the treatment that will probably be key to controlling your disease for the rest of your life. That is such a revelation, I know. It's like a miracle when we are able to live our lives without our most constant companion, pain. Most of us find that a mix of several treatment types is the way to go. Most certainly, I have.

As for doctors, I think they are slowly coming around to the idea of using diet as a potential treatment component. It's going to take time for the idea to take, but as more of us have frank and open discussions with our rheumies about using diet and how good we feel having eliminated most or all starch from our diets, the more may come around. But whether or not you will ever convince them all that kleb. p. is the be all, end all? They will have to find the evidence much more varied and compelling than it currently is.

Hugs,

Hi Tinkerbell,

I think the reason the medical profession has such a hard time accepting the diet is because of the difficulties of doing a clinical study which, as I mentioned in my earlier post, is almost impossible to do using the standards that medical research requires.

I agree that, just like in diabetes, the diet is by far a better way of managing AS than by drugs alone. I guess one of the difficulties is that the cause of diabetes has been figured out and there's a good understanding of the function of the pancreas, insulin and the response to sugar in the diet. Unfortunately, for AS, it's not so clear cut. There are plenty of people who do not respond to the diet and there's also the complication of people who have multiple autoimmune disorders as well as those who are HLAB27 negative. In other words, there's probably more to the story than just the klebs.

However, I think it's an excellent idea for anyone diagnosed with AS to give the diet a really good try because if it works, what a relief, especially as all the drugs are so scary.

I tried the diet myself for about six weeks when I thought I had AS. I had no improvement but was then given a diagnosis of RA. There's no evidence to suggest the diet works for RA so I stopped it then - especially as it's such a challenge to follow.

I'm really glad it worked for you.