Kickas.org Forums Treatments, Drugs and Alternatives NSD and diet-related; No/Low Starch Diet Success Stories

First of all, Kiwi, thank you for your gracious reply.
I am writing this post with a request to you as moderator. I believe that kickas.org is a great forum. However, I believe that the NS diet section is not a balanced forum. The sticky posts at the top are all pro diet, perhaps reflecting the beliefs of the moderators, who have had good experiences of the diet. But in my opinion, the forum does not promote a balanced view, because all the other posts get pushed down, leaving the NSD success stories at the top. While I am sure the moderators have had excellent results with the diet, there are also others who have followed it meticulously and not have had good results (e.g. jroc). That feedback is as important to get as the success stories. In my opinion, the forum can be balanced if non success stories are also given prominence. In this respect, I would like to formally ask you and other moderators to consider making my post , "Failures of NSD/ LST" a sticky post, since it already has 85 responses and 1700 views. If it is made sticky , then those visiting this forum will have equal exposure to two routes. If they want to hear success stories, then they can visit the already sticky topic, .. success stories. On the other hand, if they want to hear the failures /reasons for failure, they can click on the Failures of NSD/LSD post , which if made sticky, would also be at the top. In my opinion, balanced discussion is vital if we are to explore and refine this diet for the benefit of all who suffer. In its present state, the board is biased, i.e. encourages positive replies, but does not actively encourage negative reports. A balanced board, in my opinion would serve all of us better. In this respect, please consider my request to make the non success section also sticky. Thank you.

Hi pspondylitis,

I'd like to reply to your request, since I can appreciate your misunderstanding.

The purpose of the NSD and Diet-related Forum, together with the Diet-specific Recipes Forum is not to provide a 'balanced' view but rather to offer an area dedicated to those interested in supporting each other in a diet approach to the treatment of their AS. You may find the biologics forum equally biased.

Within the context of a site with multiple forums available, providing similar dedicated areas of support to those interested in a wide variety of treatment approaches, KickAS.org offers the best patient to patient support (imo) where we can share with, and learn from, the experience of others coping with AS.

Set-backs and failures, for those who have not found success with any given treatment are discussed in every forum on KA, but KA is all about support and highlighting what works and celebrating each others successes. I fail to see how making any of our failures into sticky posts will serve to encourage anyone to carry on their fight to find the best way to manage their disease. We've all probably experienced enough failures in our lives.

Spirited and constructive debate is both healthy and welcome in all forums of course, as long as we continue to be mindful and considerate of each others treatment preferences, personal experiences, and opinions.

It seems you have been involved in some very balanced and open discussions regarding the merits of NSD and the scientific research behind it. That you may not find many like-minded viewpoints within this forum, should probably not come as a surprise.

Thank you for your input - we hope you will continue to enjoy KA!
mig

Continue your version of No Starch, but don't discredit something you are not even doing correctly (perhaps you've changed your foods, but I'm guessing not).

Dear Mig,

I appreciate you taking time to reply to my request. I understand and accept your decision, though I do not completely agree with it. My main concern is that there may be a group of people on this forum who are in natural remission , who are therefore on a quite restrictive diet unnecessarily , and the diet MAY have unknown side effects ( for example, resistive starches are considered good for colon health). In this context, the forum may unintentionally actually be causing harm. When one is offered a treatment, one needs to balance the advantages versus risks. e.g. the pain relief of NSAIDS versus the risk of gastric bleeding /renal toxicity of NSAIDS. Most doctors (those doing their job correctly) would be expected to tell you both, the positive and negative, and let you decide, after all it is your body, not theirs. However, if you look at the diet section of kickas, you will see that the design of the forum encourages success stories, which therefore gives less exposure to failure stories. In that sense, the forum is not being supportive to those AS sufferers who want to hear both sides of the coin before embarking on the diet. It is like a doctor telling that NSAIDS will relieve your pain, but not telling you about gastric and renal problems. We would consider such a doctor not fit to practice. Now, if you take a look at this forum, that is what it is doing, encouraging one side of the story only. Perhaps a suggestion that may work would be to have a sticky topic titled simply "Ongoing diet reports". That way, everyone will be encouraged to write their story, without the emotive term "failure". Please do not take my comments as being non appreciative of your and others hard work. It is great that people like yourself spend so much of your personal time to help others. You and me are speaking from the same side of the fence, i.e. we both want to support AS sufferers. What we disagree is only on how best to do it.

Dear Pspondylitis
Honestly mate I just don't get it.

I rarely post because I am in the early stages of the diet. I began the diet in December 2009 and since then there has been steady improvement. Sometimes I have made incredible progress (the first 3 days of NSD, adopting the Paleo Autoimmune Protocol etc...) other times I have had set backs. Fortunately for me my set backs diminish in intensity and duration over time.

Take for example 2012. I have had two mild cases of iritis. I could panic, say it doesn't work or I could remind myself that I am so much better off than I was in 2011, 2010 and 2009. In other words I have a sense of perspective that is grounded on empirical data arrived through experimentation. There is no placebo effect. “I eat starch my pain exists” (Des-Starch). Stop trying to convince others that our remission is in our minds! It is not. Or if it is, good for us! Peace to all.

The main forum is the space for debate about the diet. The NSD forum is for people to exchange ideas, support each other and hopefully achieve some benefits in terms of pain. Feel free to debate the diet. There is ample room in the main forum.

You CANNOT claim the diet does not work until you have tried it for a significant period of time, say a year. I understand this is a leap of faith to adhere to something that does not provide tangible benefits. Fine. Don't do it. However, do not devalue the experimentation of others and their bodies' expression of their endeavours.

It may well be that the diet does not work for everyone. Point taken. I accept that. Others may require other interventions. However, for those of use who respond to dietary measures and objectify hope through their own actions: let us be. I do not postulate that the diet works for everyone. I do not devalue those who say the diet does not work. I can only draw from my own experiences and say time is an essential pillar of the diet. Some are in too much pain to wait to see if it works. Perhaps for others it will never work. I respect their decision to seek other measures. There are no absolutes other than our own reality.

So to summarise. Do it or don't. Challenge the diet as much as you like but maybe use the correct forum. Leave the NSD forum to NSDers. We know the risks but we are also acutely aware of the sense of powerlessness that AS can constitute. The diet places "doing" at the centre of our AS pathology. We like it. It may not be perfect, it may not work universally, but for some of us it has been a life changer.

Come back 6 months or so from now and say it was all a waste of time. Until then trust in your fellow KickASers experiences. Do it or don’t.

"The history of all hitherto interventions is the history of the starch struggles"
Karl Starch, " Community Forum Manifesto."

Keith (NSD/Paleo dieter)

"The diet places "doing" at the centre of our AS pathology."

Exactly.

Time is absolutely a major component of feeling better by 'change-of-diet'.
I'm a year into a auto immune protocol diet, and I'd say 70% better at this point, 50% if I exert myself by attempting an activity (short hike, run, or bike ride).

My focus last year was to just get back into the workforce. That took 5 months on the diet.

This year I'll be working on adding muscle mass, increasing activity levels / working on the fatigue-factor, which is still a big problem for me when attempting exercise, or having accessive pressure on upper back (commuting by car!).

I become frustrated these days, since I don't see great improvements 'anymore', until I check myself, thinking "I rode a bike today for 1.5hrs". Wouldn't have had the energy for that 6 months ago. I'm stiff and in pain 3 days later - but hopefully this will improve too, over time....

1. If you read my post you will realise that my main request is that by making "diet success" stories a sticky topic, the forum is only encouraging positive reports. That in my mind is wrong, as it prevents one from judging the diet fully. If you look at the biologics part of this forum, you don't find a sticky topic saying "Success stories of biologics", and therefore , I believe that that segment is more unbiased. Progress will only come from looking at things objectively, not emotionally.

2. The above point is my main concern. The rest are less important. I do believe that it is possible to have a strong placebo effect when one has a desperate disease like AS. I also believe that there may be many in remission, who are doing the diet unnecessarily. For an example, someone ( I can't remember who) mentioned in a post that they can now eat any starch without effect. To me , that sounds very much like remission. But these are only my thoughts. My main issue is point no. 1.

3. I am not the owner or moderator of this site. I can only voice my concerns, which I have, and it is of course within the rights of the people running the forum to run it as they see fit. I understand that for some, their belief in the starch diet is almost religious, and where questioning it is almost like sacrilege.

1) I think we all get Your point.
2) To find opinions against diet all one has to do is ask most physicians. Yes, they are nearly all frauds who will not take the time to tell us about the dangers of NSAIDs.
3) Suggest You either start Your own website, or stay here to defend Your position and notify every single new diet adherent of YOUR single observations.
4) If Your observations do not change over time, I would suspect the motives behind Your requests: With every post You are losing credibility and by now I much trouble convincing myself that You are even on NSD, but I am TRYING to BELIEVE YOU!

Hi pspondylitis,

In the hope of improving your understanding, allow me to try once more also. KA is not offering a treatment - but offers a *place* for discussion. KA is a shell and home for people to discuss. The site is not offering medical advice, nor are we doctors.

KA's forums did not come to be through top down design but were opened over the years based on interest expressed by it's community. Interest in diet was such that a diet forum was created early on in the history of this site, just as a biologics forum came to be when these newer treatments became available. The volunteer team that helps to oversee the site does not decide on content. Content is created by members. If there had been few successes and multiple failures - this forum surely would have ceased to exist, rather than to flourish as it has. The percentage or balance of thread topics you find on this forum is a direct reflection of the members experiences - if the majority are finding the diet beneficial - that's just a fact!

Re: the successes sticky topic. Again the thread topic was initiated by a long time member of KA. I can't even recall if it was stickied from the beginning or if it kept naturally being bumped up so often that we eventually just stickied it there for convenience. Regardless, if so many had not piled on to add their stories, it would have been un-stickied. You are correct that people find it a source of encouragement!

I absolutely agree that everyone needs to balance the risk versus benefits for themselves, in the context of their own health situation, after doing their own research (using whichever combination of resources they feel are valid) and in consultation with their own physicians. I understand your concern for others, I have felt similar concerns myself in the past on a variety of subjects discussed, however, I fundamentally respect the right of others to make their own choices and decisions.

I'm sure you can appreciate that without a stronger impetus to change a winning formula that has helped so many - this is KA!
mig

Even if the diet works for me, I would still think that it would be good to have a sticky area where people are simply asked to put in their progress.

You use words harshly. Just because you may have had a bad experience of physicians, does not mean that all are fraudulent ! There are plenty of people in this forum who will acknowledge that their physicians are trying to help them, but the tools they have are not many.

I did think briefly about starting a website to see effect of diet and inflammatory disease, or rather a database where people would be encouraged to put in their experiences, positive and negative. While I have some experience running websites, running a database is beyond my ability for now. Also, I believe that kickas has a good collection of people, a valuable resource to tap into if we are to learn about this disease. More websites mushrooming all over the place will only dilute this resource.

Your views seem to be black or white. You cannot entertain any other view, which in my opinion is bad science.

I am going to continue this diet for one more week, with antibiotics now. Right now, there is no significant improvement. If things are no different in one week, I will, in MY opinion consider the diet a failure, since, with the kleb theory, I will expect at least a slight improvement, specially with antibiotic. That is MY opinion, which of course could be wrong.

Whatever the outcome of my diet, I will still believe that kickas should promote people reporting their experiences, positive or negative. Whether that is something you , as the owner of this forum wants, is of course your call.

I have decided, and this will be a relief to many who probably consider me an irritant, that for now, I will refrain from questioning this diet. I will continue to post my progress, but otherwise try and be quiet.

Thank you.