Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group There is very little evidence diets help AS.

Guys, I distrust big pharma myself, but please get off this thing about not trusting these organizations whose only purpose is to help people with arthritis...namely...US!

Sorry to go on about it, but really, it frustrates the hell out of me.

Well put Sue, couldn't agree more. scientific theory is like a runaway freight train and doesn't easily slow down and change direction. perhaps because the people on the train have to admit that they were wrong or at least not 100% right. the h.pylori example is very appropriate and science is full of theories that were correct and were completely rubbished before eventually being accepted e.g. plate tectonics, health problems from lead, CFC's causing ozone damage etc. I like the quote from Bill Bryson's book "A short history of nearly everything" on how new scientific discoveries are made

"There are three stages in scientific discovery: first, people deny that it is true, then they deny that it is important, finally they credit the wrong person"

It is fairly uncontroversial that type II diabetes has diet as one of the root causes. There have been diet studies done to demonstrate that, at least in early stages, it can be reversed by diet alone.

At Cedar Sinai hospital, the AS rheumetologist happens to share an office area with a nutrition department supporting diabetes patients, who can really use the help from professionals. They also need support from their close family members, or else it is almost impossible. As a result, very few people who actually have type II diabetes have managed to cure themselves by diet -- they are frequently on prescription drugs to control it!

So, suppose for the moment that diet were a significant contributing factor to AS.

In one sense we are in the same boat as the diabetes patients, in that it is very challenging to design a successful diet treatment without the support of experts. Many people will fail, and a few very determined, with very supportive families and/or friends, or perhaps less far-advanced in disease will succeed. So the case-study results will be mixed, which is what I've observed.

Side note: people who succeed at diet while others fail do not have the right to be arrogant about how they have "so much more determination and will-power". Their whole life situation contributed to success as well... for instance they either have a super-dedicated loved one preparing starch-free dairy-free whatever-free meals for them, or they still have sufficient health to be able to shop and cook things from scratch. Also the availability or lack of availability of starch-free produce in local markets could have a big impact on whether you succeed or not. In addition there is the question of how long it takes to respond to diet; those who see even small results in a few weeks have a huge advantage over someone who wouldn't be able to discern any improvement without strict compliance for a whole year.

So, what about the research studies on diet: if diet is a valid approach to treating AS, why isn't anybody publishing papers on it?

Even if diet works, it would still be hard to get the large-scale medical studies going to provide evidence. There are millions of people with diabetes, and governments have pegged it as a high-priority public health issue -- how many people have even heard of AS in comparison?

On the other hand, rheumetologists have heard of AS, and could be doing small-scale studies of diet similar to those old London studies that certain people are getting tired of. Why aren't they?? Doctors are people too, and are influenced by current medical culture and what they were taught in school. Diet treatments were NOT taught much in medical school; they are the realm of nutritionists, not hot-shot arthritis researchers. Biotech is very hot and glamorous, and the lead researcher for the AS study in which I participate is just as turned on by new biologics as I am by elegant software design. At the moment he doesn't want to spend his time designing nutritional studies instead, and figuring out how to recruit enough patients who will actually be compliant day in and day out for months and years at a time. What exactly is his motivation to switch?

Another side note: I have doctors in my family, and a cousin currently in med school. Note that I didn't say they are all in the pockets of the drug manufacturers. Sure drug companies have an influence on mainstream medical knowledge by making it easy to get funding for certain types of studies, but they haven't perfected mind-control or anything.

I do know one doctor who studied at UCLA (very traditional, well-respected medical school) but has sort of a maverick personality and keeps a close watch on "alternative" medicine areas to learn what the mainstream medical practices might be missing. He found that diet is one of those areas, and has incorporated it into his practice. He has had good success in treating many "ADD" (Attention Deficit Disorder) children with diet instead of drugging them like just about every other doctor in our county. He also happens to be my doctor, and his professional opinion on auto-immune arthritis (as a GP, not a specialist) is that:

* the immune system is flared up over some type or types of germs chronically present in the body
* starch-free diet cuts down on a known reservoir of potentially problem-causing germs, especially important if the gut is "leaky"
* finding the right drug to kill the problem germs could also work well, but some bacteria are very tricky about hiding inside cells and are nearly impossible to eradicate (see http://cpnhelp.org/ for example of a tricky bug implicated in some cases of auto-immune diseases such as MS and non-AS arthritis)

So, I've got one "mainstream" doctor who likes to organize big research projects and focuses on high-tech treatment of symptoms rather than exploring causes, and one "maverick" doctor who is interested in exploring diet and antibiotics but only on a patient-by-patient basis -- no interest in organizing research projects, doesn't have time left after his practice and raising his kids. No prospect in sight for getting into a rigorous study on diet, and that is where we all stand right now...

so my question is, if diet is promoted for diabetes, cholesterol, heart disease, insulin resistance, metabolic syndrome, all of these things influencing the other, and if diet has been determined to have an effect on these things, as i think it is safe to say, then how is diet and arthritis any different? why can't it be figured out, to the point of convincing everyone one way or the other? wouldn't the same criteria exist, wouldn't the same kinds of studies answer the question for everyone? i do see the issues others describe. but if its been worked out for other diseases, then why not here, to the point of convincing everyone? and the arguments about vested interests, etc, well, they'd also exist for the other diseases as well. only wondering what the difference is between the difference diseases in regards to diet. in my mind, i don't see any difference.

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