Kickas.org Forums Treatments, Drugs and Alternatives NSD and diet-related; link to interesting discussion about NSD

If you skip over the first few paragraphs of verbal abuse, I think there was some interesting information there.

But, I think the important thing about the diet is that is works differently for everyone - just as everyone's AS is personal to them.

I do not need to go dariy free to get pain free for example. This guy was adamant that you should be - I think he is wrong about that.

Some people don't even need to go starch free, just reducing the amount they eat gets them pain free.

I would also like to add that Dr Ebringers diet recommends increasing your milk products!

He also advocates low-starch unless your AS is "active" in which case no-starch is advisable.

I follow Dr Ebringer's advice since he was the one who diagnosed me with AS and he was the one who got me into remission (within the 3 months) for the last 10 years.

I am following his advice again because I am having a flare up - and it is working. I don't find cutting out dairy to be relevant at all to me.

Although some of what this guy said was good info and advice - did you notice how badly it went down with other members?

I think it is very negative advertising for the diet - because it is insulting and patronising - even to those who do the diet!!!

Sharing the diet should be positive, informative and pressure free. It's all about spreading the word and letting people decide for themselves.

Apart from anything else, the diet is hard - you have a withdrawal period like giving up smoking or drinking! You get headaches and feel ill to start with (starch is totally addictive), so people have to be committed for it to be a success. If they are going to be committed it has to be their own choice, it has to come from them.

This diet has been a life-saver for me and I want to tell everyone about it - I would never force it down their throat like that guy did though.

Hey Jet - I did not read thru the entire thing but I'm familiar with the heated debates on that site. Have you spent much time on the site. My doc suggested SAA for information to help me understand what I have. So I checked it regularly, along with kickas for insight, suggestions, possible treatment and to feel not so lost and alone. The people posting most often at the time of my visits were not very positive about nsd- some allowed that they heard it helped others, while others told newcomers it was a waste of time and unhealthy. Some were kind enough to suggest this wonderful site if one was truly interested. Me being a meek soul would pm newcomers who asked about diet or alternatives to medication because I couldn't stand the attitude, there's enough internally negativity that comes with this disease, Finally, i stopped visiting.
- I needed hope. Interestingly enough, that's the theme of their new video. I'm trying to be positive, but the video was awfully depressing. I'm guessing its to drive donations and provide awareness - it didn't mention treatments of any kind unless I missed something.
these are just my thoughts

I also wanted to add that it may have been "pushy" in reaction to some of the naysayers - some of what I read really got nasty, and I wasn't even around during the posts you provided

Thank goodness for KickAS. I find SAA boards/forum very off-putting. I have thought about registering on many occasions, basically to call out two characters who I believe to be some sort of plants with ulterior motives. Any time anything but medication is offered, those two are quick to respond and discount the alternative. Any alternative. Infuriating. Again, thank goodness for KickAS.

Jay - I've also wondered about a couple of posters - thought maybe they worked for a pharmaceutical. hmmm

Dragonslayer on this site I believe was the original poster you refer to. yes he comes on very strong and I believe it hits many the wrong way unfortunately. it was 4 years ago as well.

Look at the recent heated discussion on this board when those who do not do reduced starch diets are called soft in the head. the boards are not that different, except here the diet section is broken out and that avoids a lot of the problems. I think the history of KickAS is full of those discussions.

I find info on the SAA site that is not present on Kickas. Both serve a very important function. Kickas Is the board while the board on the SAA site in not really the focus of the organization and only a side bar. That organization serves us well in other capacities. I loved the SAA video they put out to first responders on how to treat spondys with fused necks and backs. That will save a few lives. I also love the webinars they sponsor around the country with doctors and patients sharing treatment advice.

While the focus of the boards are very different I am a supporter of the SAA as a whole and the work they do to help cure this disease. They recruited the docs and got the ball rolling on the new genetic research on AS that may bve a benefit to all one day. meanwhile the other arthritis groups pretty much ignore AS.

Understand that I am not condemning SAA and any of it's offerings. I personally choose not to follow their offerings, advice, etc, but have no issue with the work they do or individuals that look to that organization as a resource. My reservations were with a few of the posters and the speed at which they dismiss anything outside of medication as ineffective. Really, the overall feel or attitude of that board is rather unflattering (to put it nicely).

I disagree that the boards are not different. The majority of the participants on that site appear to be a bunch of weak-minded individuals who show little incentive to try and help themselves and are only reliant on their white coated false prophets. My perception of the members here is that the vast majority are willing to attempt to employ a wide array of methods to try and help themselves. Perhaps this commentary doesn't sit well with some. My advice. Ignore it. Similar to the "soft in the head" post, it is likely to offend. Did the "soft in the head" post lack tact? Yes. However, I have been of the same sentiment as that original poster. It has sometimes been hard to comprehend how individuals appear to be unwilling to try and help themselves. However, I then understand that I really don't know what that individual is truly dealing with (i.e. walking a mile in their shoes). Therefore, I just ignore serial complainers/whiners. Pretty simple.

Do my comments lack tact? Likely. Those that want to be offended will be; those that don't will not waste their time, will ignore me, and will move on to more important things. Another health related forum on which I participate has an ignore button. Perhaps this site will one day too.

Wow, wow, and double wow. I cease to be amazed at how sensitive people are when you try to take away their bread!! You'd think John had just told some of those guys he'd just had an innappropriate evening with their mother!

Maybe its because I naturally run from uncomfortable confrontations. I read stuff on the net ALL THE TIME that I don't agree with, but I don't jump on my soapbox and shout the person down. It's their opinion. Everybody's got one, and that's OK.

One thing that Dragonslayer mentioned on there is that Giardia could bring on AS. I posted this earlier in the shout box, sorry to repeat, but at 19 my bf(now hubby) "tried" to teach me how to water ski in the beautiful Snake River. Hour after hour he drug me up and down a relatively calm stretch of river and MAN did I drink alot of it!! lol

John is so calm now too. He reminds me of a seasoned Zen Master who calmly lets things roll off when he gets attacked. Meanwhile me and my buddy Darryn still get a little hot under the collar trying to defend it! lol Darryn you can tell me to htfu anytime I step out of line on my NSD. Hillarious.

This is a great place. I love the people who do the NSD. And I love the people who don't. We are like a big, dysfunctional family full of characters of every sort, and I love it!

-Donette

p.s. John's post mentioned a laxative effect, I know coconut flour helps, and someone mentioned psyllium, but what ELSE is there to speed things along while on NSD? When I get constipated my AS flares terribly, I suppose its like an all-night or 24 hour buffet for the Klebs. Sorry for the visual.

Hi Tink,

It is true that it is often mentioned here about cutting out dairy along with starch. Certainly with my husband Jon his progress on the diet really leapt ahead when he cut out dairy and he flares from it even today if he has too much of it. This seems to be something experienced by many other members also. Jon can get away with a bit of chocolate and small amounts of hard cheese but that's it.

Also, if Jon followed Ebringer's advice to simply reduce starch and to increase dairy he would be in a wheelchair today. We all seem to have different starch tolerance levels and Jon's tolerance is very low. A "Low" starch diet would have no effect on him...it has to be "No". Ebringer also promoted low starch along with a DMARD like sulphasalazine. So if you're not going to take meds of any kind then a stricter diet is usually necessary.

You are so lucky that a 3 month stint on the diet put you into a 10 year remission...that is certainly the exception, not the rule!

When Jon goes super strict on the diet his pain gets down pretty much to nil. So you would think then he could relax for a while to Low starch...but no. The moment he relaxes just a little it all comes back. We are still waiting for the elusive day when his as wont be "active" and he can revert to a low starch diet.

All the best