Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group head on question

Rene,

And, the preceding message, personally attacking the poster, is why Billy will hear little said against the NSD theory on KickAS. That and the owner of this web site was "saved" by it.

Thus, people can advocate ignoring medical advice with impunity, but God help you if you are "anti-diet" (as defined as being other than 100% in favor of it 100% curing everyone who precisely does it just so). Rather than anti-diet, I like to think that I am pro-science.

No need for facts on KickAS, however, when you have the playground bullies to enforce your "truth".

Best regards,

jcwinnie

Hi,
Did not by any means meant to imply that your positive results "are placebo" in any way. THis diet may very well work for you. It may work for many others. However, eliminating sugar from one's diet also has helped many with arthritis who still keep starch in their diets. My comments were meant to emphasize that there are many "theories" or possible explanations as to what AS and other disease are triggerred by. NSD is not the be all to end all. Sorry, but that is how I see it. I truly feel that people would be better helped by being encouraged to look at all triggers in their diet, for some it may be dairy for some sugar or for some starch rather than only encouraging people on this site to do the NSD approach. Sorry, but the NSD approach is simply that one approach among many. Just as there are many theories in the medical field as to the etiology of these diseases. This does not mean that your positive results are not a direct result of NSD. They likely are a direct result of NSD for you! But not everyone will respond. It is the same as why some respond to MTx, some to Enbrel some not all etc... I am well aware that the "established" medical profession does not uniformly endorse any diet per say, suagr, gluten free or NSD. The medical profession is a little behind on embracing alternative treatements. I simply feel that this site can be biased, at times, in endorsing NSD when there are other avenues that may be just as viable.


Rene a.k.a Julie
Kodi

Thanks Winnie!
Enjoyed the picture!!
It is difficult for people not to be emotional as those who have been helped by this approach are eager to encourage others to try it. Also, many times we are told by physicians that what we find works or doesn't work, diet etc. is "not possilbe" by our doctors. Thus, people get defensive very quickly when we challenge an apporach they are convinced works for them. I have always said that this diet may very well work for some poeple. Also those who have a background in pure research will understand that sometimes other confounding factors can influence results or contribute to results; weight loss as an example.

Rene a.k.a Julie
Kodi

Hi Julie and jcwinnie, I knew this thread would get interesting......

You've hit the nail on the head, Julie. It's certainly true that because of seeing the relief this diet has brought my husband Jon it has made me very eager to suggest it to others to try out. I stress SUGGEST. It makes me cry when I read of some people here who are on a list of medications as long as my arm and yet are still suffering so badly with no relief in sight. Perhaps the diet won't work for them, but what if it did? What if it helped even 30%? Wouldn't it be worth it? Is there anything wrong with suggesting it as an option to people? All kinds of suggestions are made on this website - meds, alternatives like acupunture, probiotics as well as the diet.

A lot of people seem to dismiss the diet out of hand without even giving it a go, which is very sad to me. Perhaps I will stop advocating it in my posts as I have been lately, esp if I am going to be labelled as a bully who promotes ignoring doctor's advice.

I certainly am not anti-doctors or anti-medication. I do not advocate ingnoring doctor's advice. In fact, my husband is on the NSD with his rhuematologist's blessing. Jon still takes his Bextra. Our view was that if the diet could help reduce the inflammation and necessitate less medication that would be great. I am certainly not saying taking meds is bad or wrong just that if it can be avoided by a simple diet change, then why not do that? If it doesn't work, well at least it was one avenue that was explored and it can be ticked off the list of things to try. On to the next.

All I am saying is to everyone that can - TRY the diet. Continue taking your meds while you do this. If it doesn't work after a few months then give up and try whatever other means possible to get relief. If a miracle drug comes out tomorrow to cure AS with minimal side effects, I will be the first in the queue for Jon.

OK, that's my speech done
Chelsea

Edited by Kiwi on 11/10/04 04:45 PM (server time).

Hi Chelsea,
I absolutely think that people should try this diet. (I don't think Winnie was referring to you in the bully part). I totally think people should encourage people to try what has worked for them as well as other approaches. If people find they can drop meds due to positive effects from the NSD that is wonderful! However, not everyone will benefit in my opinion as I do not believe that NSD is going to be the answer for everyone and I think what JCwinnie and I were getting at is that sometimes people tend to relay the NSD approach as THE approach that will work for everyone. I still believe that for some starch may be the trigger and for others eliminating other sources of agitation to the body (sugar, or dairy) may result in a better result or none at all. All I meant is that every individual is different and I have doubts that NSD would work for everyone. Also, I see your point that many people choose not to try the diet in full for many reasons. But there is not much anyone can do about that as people have to decide for themselves to try something or not. And it is hard to give up "comfort" foods or make radical changes in diet (as is evident with the obesity epidemic in our country).
Keep encouraging others to try what has helped for your husband! I only meant that not all will see those same positive results no matter how hard they try to do the diet correctly , in my opinion.
Take care

Rene a.k.a Julie
Kodi

Hi Rene,

I think me and you are totally on the same wavelength . I also don't think this diet will work for everyone, in fact I know it doesn't. Much like yourself, I see that many people do have sucess with it so it seems sensible to recommend something that has already helped people. I suppose that's why there seems to be a lot of bias here towards it - because of the positive results many have had. There's got to be something to that, right? Not that it's "the be all and end all" and nothing else should be considered but that there's definately something there to suggest it could work.

It's interesting what you mention about sugar and dairy because some on the NSD (incl my Jon) don't progress much until they also eliminate/restrict these. If you have a read in the NSD forum you will see that many are doing this already as well as the NSD so there is definately something to what you were saying about different triggers/agitators for people.

I just hope one day the scientists can get to the bottom of it for sure and we can be rid of it!!

All the best to you,
Chelsea

Hi Chelsea,

The NSD diet did not work for me and I am B27+. I was on it 12 months I lost 10kg and my ESR did not drop I have also tryed fasting but this did not help, but I think why this diet works for some people and not for others could be how you got AS.
In my case it was not from illness or accident I was about 10 years old and started to get pain down the back of my legs and later on stiffness at the age of 16 I could hardly walk, dx at age 17 just from a plain X-ray and blood test.
No food makes any difference to my AS but low starch helps my bowel pain!

Adriaan

Julie,

what I was struck by in your post was the implication that all the theories had the same value. But as you know a theory only starts to stand up and walk when its implications are verified by experiment. The klebsiella molecular mimicry theory behind the diet now has a considerable body of published evidence to support it to the extent that the textbooks dealing with the etiology now discuss it and reference the research papers in considerable detail. So I felt that saying it had no more going for it than any other theory was a bit flip, that's all.

And what's he then that says I play the villain
When this advice is free I give and honest

Hi,

Sorry for jumping in but I've noticed some very respectable sites also stating more and more about diet and bowel flora in both SpA and IBD.

Even the local pharmacist journals are really going on about it and they tend to be progessive here they really pitched in to get enbrel and remicade listed for AS.

I do n't think it will work for everyone but not everyone has the same disease and there'sub groups of the diseases. My plaecebo effect lasted on and off from 1988. I just think I was lucky and something worked that kept me off meds and relatively healthy for much longer than if I'd not stopped those foods, probably on new hips by now and in a much worse state elsewhere.

So for newbies or others who are having a bad time and having trouble with drugs it may be something to try that reduces pain, fusion and cuts back on meds.....

You should visit my house after I've eaten pizza, you know which room I'll be in.....wish it still worked as well and for everyone.

David