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

Hello everyone,
had a very good conversation with my Rheumy today. For the first time I talked to her about the NSD and she encouraged me.
She said that she had never heard of it but that I should keep doing if I think it is making me feel better.
She said that there is a lot of things that are not scientifically prooven but can be done to lower the symptoms and as the NSD has no side effects, "keep doing and tell me the results". She also said that after such a long time taking NSAID she was going to recomend me to take biologicals but after seeing me decided to wait and see how much I can improove in a few more months.

Hey Leovix, that is really great that your rheumy is supportive of trying the diet. Nice to know there are some open-minded rheumies out there after all!

That is so awesome! I am hoping for the same results on my next visit!

I find it so hard to believe that there are rheumatologists out there who have 'never heard of' the low starch diet.

Do they not do any reading etc about AS and other diseases in which they specialise?

I mean, if they know about it but don't necessarily support it then fine, but I find it very surprising when they have not heard of it at all.

I agree Philsta.

Even when googling scientific terms you can be directed to Kickas.
Even a cursory glance at Kickas will indicate many people are helped to varying degrees by removing starch from their diet.

To discount their experiences as nothing more than a placebo effect is disrespectful - to say the least.

Not to even know of the diet doesn't say much ....

I can't wait for the day when modern medicine announces its 'discovery' of the LSD/NSD.

You are lucky to have someone willing to go along with it. I agree too that it is shocking that the majority of Rheumys havent heard of the diet. Mine just looked pityingly at me, which made it worse considering Ebringer discovered the link with starch in the UK.

I have found on my attempts to discuss diet with anyone that the nurses in the background seem more receptive/interested. I have only seen the Rheumy consultant once, all other times I have seen one of his minions. She had never heard of it but did look slightly more curious and is allowing me to continue with the diet and not go on medication just yet with the proviso that if I get worse then I would.

When I go in a few weeks time I am going armed with print outs to give her. If I can make one person more aware maybe it would eventually have an effect. That is if the printouts don't just end up in the bin which I suspect they would if I gave them to the consultant. I suspect he knew of it but was of the opinion that it doesn't work. Unfortunately the area we live in is less likely to have people who would be able to stick to it/spend the time on it for good results especially when little guidance is probably given.

The NHS leaflet I was given about AS only includes a few words about diet 'eat anything, especially protein such as meat and fish'!!!!!

I am also telling everyone I know what I am doing and that it makes a difference in the hope it will raise awareness. Unfortunately most people look sympathetically at you (poor dear you cant make a difference with diet). However maybe just maybe if they come across/know someone who is suffering they might remember that there is something that might help.

The real truth is , that the diet is not proven. It is entirely possible, that the many "success" stories are actually people who may have gone into a state of remission/ burn out anyway. I am not saying that this is what is happening, all I am saying is that it is quite possible. Spondylitis symptoms come and go for many of us. For an example, about ? three years ago , I developed jaw pain for about a week, when even eating was painful. I have never had it again for three years, so that symptom has gone into "remission". So if I was studying the effect of coffee and jaw pain, and stopped coffee at that time, I might have concluded wrongly that avoiding coffee has prevented jaw pain. The NS / LS diet is NOT harmless. If it is a placebo, then a lot of people are adding to their burden of AS by having a difficult diet, with potential other problems such as increased risk of cancer in the gut etc. There is a lot of work left to be done to prove this diet.

I really need you to explain to me how this diet is harmful. You keep posting this constantly and yet no one is twisting your arm to use NS/LS. The REAL TRUTH is from what little you posted on what you're eating....it's processed and not remotely even close to what I eat. Which is vegs, fruits,nuts,fish,chicken, meat...please explain to me how this is bad for me???

http://blogs.discovermagazine.com/crux/2...-are-all-wrong/

I'll say it again...I am so sorry you don't feel this WOE works for you...It seems to work for so many others, as they relate their stories here...why do you feel the need to try to scare them with your idea of how they eat??

Please forgive me for highjacking your thread Leovix. I have my GP's ok and my Rhumy's ok. So far after 5 months, and a few set backs (due to what I ingested...I know this because I removed all Starch and had some sneek back in without realizing it) for me my pain is staying at a manageable 1-2 and not the 7-9 it was. I can sit, lay, stand, (with no pain) and even take the dogs for a walk again.

For me the diet is proven, it appears to me you do not believe fellow Kickers when you state "entirely possible" or "quite possible".

A coincidental remission/placebo effect cannot explain when I mistakenly ate starch several months after being pain free on diet as I did not know corn and bananas were starchy or sausages could have modified starch fillers.... I was a single male that knew nothing of cooking/nutrition/diet when I started diet.

This also does not explain after 5 years on diet when I moved to Argentina and my wife and her family began cooking for me and I would flare only to ask afterwards what was in a sause or the like and learn it was something starchy. They are now well aware of many foods on my no list they thought were fine.

Those are 2 distinct episodes I unknowningly failed starch tests... that does not include the many times I have tried to reincorporate some more easily digested starch as I heal my intestines to see if I can.

If you lived in my boby for several months you would not be questioning the diet as you do as you could perform all the tests you want. To me that shows a lack of faith in your fellow Kickers who have found something that works. That is my real truth.

Take care,

Tim

The diet is also one of the healthiest diets one can possibly eat.

It is incredibly nutritionally dense. If performed properly, there is no known nutrient that the low starch diet is deficient in. It is high in fibre. It excludes nearly all processed food and is therefore low in salt, preservatives and trans-fats. It will lower cholesterol. It can be made low in carbohydrates if so desired, but that is not necessary. It will prevent diabetes.

Several MDs (2 GPs, 2 rhuems) have verified this for me.


I was skeptical like you, only about half a year ago. Then I turned off my computer, and gave the diet an honest shot for myself. I now take zero medication and am fully functional and 90% pain free. Provided I stick to the diet.

Hi, pspondylitis:

REAL TRUTH?

Well, You can SAY whatever You want, but the FACTS are the diet IS proven clinically, and endorsed by the scientific community at large, albeit rejected by almost the entire medical industry because of objections such as Yours.

If a person has AS and wants to overcome the disease, they can try many things. But they actually WILL TRY many things, including the advice of physicians who do not know what to do or what to say to encourage their patients to PREVENT DAMAGE.

The NSD is hard for some and impossible for others. If it "might not work" for You that is the risk You would be up against. You can sabotage Your own results, if You prefer not sticking with such a severe regimen for life--but You will have only Yourself to contend with. In the end it is just You and either a massive raging monster or a minor nuisance--it shall be whatever You make of it. There will be no din of the discussion, and once the damage is done it is permanent and You will be stuck with that.

But it will always be YOUR choice.

You are not offering anything tangible, but only complaining about things we have all complained about, while distorting the facts about the diet. As Tim has pointed out, we each have a ROUND TRIP with this thing--we can go back to having AS symptoms whenever we want, so the specious bit about placebo effect or remission (MY "REMISSION" has lasted 14 years now) is just more whining.

There is NO INCREASED RISK of CANCER OF THE GUT from NSD.
NONE ZIP ZERO.

Why do You make such a statement? I want You to back this up with facts; provide Your sources and they must real cases, not inferential speculations.

If You do not want to do the diet, by all means PLEASE do not do it--You will only FAIL and cry it "...did not work for me," and the last thing we need is more false claims against this miserable regimen. But that will be Your own karma.

So either 'GIT 'ER DONE' or get out of the way because we have seen Your kind before, and it does nobody any good to hear the made up crap like NSD causes cancer. Yeah Okay it kills babies, too. Better not eat an Eskimo diet while preggers so Okay we get it, there were never any healthy Inuit newborns.

I hope You find peace and HEALTH, by the most suitable way for Yourself,

John

just wanting to make sure that i'm interpreting this correctly. in order to claim that NSD could potentially cause an increased risk of cancer it (quite rightly) requires facts and sources and not just speculation, but in order to prove that it doesn't, no evidence is necessary as long as you make emphatic statements in capital letters.

i think that this quote sums it up well - "While it certainly is correct to state that there is no evidence that a low-carbohydrate diet increases cancer risk, it is also correct to state that there is no evidence that a low-carbohydrate does not increase cancer risk." - http://onlinelibrary.wiley.com/doi/10.11...tomisedMessage=

What part of No Starch/Low Starch is low Carb?

"According to the label, when consuming 2,000 calories daily, your carbohydrates should come in at 300 grams. If your daily intake is more like 2,500 calories, then shoot for 375 grams. Both will put your carbohydrate intake at 60 percent of your calories"


http://www.lowcarbyummies.com/carbohydrate-counter-chart.htm

http://blogs.discovermagazine.com/crux/2...-are-all-wrong/

I've taken the time to read your link. I respectfully request you do the same for the above.

The part where people already on NSD or LSD also start restricting fruit/sugar intake. I don't know what percentage of people this is but it seems to be fairly common. I agree with you that NSD isn't necessarily low carb if fruit/sugar intake is increased and Ebringer's original LSD doesn't have to be low carb either especially as patients were instructed to increase consumption of fruit, beans and peas.

Ebringer however still referred to his LSD as low carb - "A simple "low carbohydrate diet" was devised, the main emphasis being in advising AS patients to significantly reduce their intake of bread, potatoes, cakes and pasta"." - The Use of a Low Starch Diet in the Treatment of Patients Suffering from Ankylosing Spondylitis, Clinical rheumatology 1996.

JUST ABSOLUTE BABBLE! This could have come out of D.C. it is so ridiculous. Yeah, Thanks for the "contribution."

(caps for You, jroc)

i do not think it was ridiculous of the authors to point out that because the subject hasn't been studied, and there is no evidence on which to base a conclusion, that using an absence of evidence as evidence of absence argument can be used by both sides, and in both cases is equally absurd. the authors would find your statement "There is NO INCREASED RISK of CANCER OF THE GUT from NSD. NONE ZIP ZERO" to be somewhat puzzling considering the lack of evidence on the subject and would no doubt wonder how you were able to arrive at such a strong conclusion barring some kind of omniscient supernatural abilities.

Again where does it say to not take in Fruit? Many fruits are cold stored and then it can become an issue as for the starch content. Sugar, it is all relative to the individual, but a report recently released on 60 minutes states no more than 100 grms for adult women and 150 grams for adult men.

http://www.cbsnews.com/video/watch/?id=7403942n&tag=cbsnewsMainColumnArea.10

As for bread, pasta, cake, potato,other high starch vegs and things that have added starch... lets say you have a hot poker (500 degrees hot) and you place it on your arm and it burns you....would you take that poker to your arm again, and again and again?

See I knew I had issues with these things years ago and to be quit frank I truly now believe I had a hysterectomy due to my gut issues when I was 37 yrs old ( I am now gasp...52), they just don't move through my gut the way they do for others. I have ended up in the hospital to many times to count due to gut pain and place on IV antibiotics. Oh, yes the doctors also wanted to take the lower part of my colon due to the "pain" and number of flares (I figured since my hysterectomy went so well, I'd jump all over that....not). I stopped eating things that seemed to bloat and take 5-7 days or more to pass through my system. In 1997-98 I found by eating things that included high carbs (the above mentioned: pasta, potato, cake, et el, caused me to become depressed within hours of eating as well. I was so desprate to not feel this way I stumbled on the Drs. Heller WOE. Which seem to help some but not always. Then I heard about Atkins (from my forward thinking Doctor...who I miss terribly, since she is now teaching) which starts one out on very low carbs and adds foods in increments to see what foods are at issue. By elemenating things and slowly adding back things over time, I figured out which/what caused my gut pain and able to stay out of the hospital to a 1x a yr or every 2 yr(Yippy no colostomy). Mind you I know I can have 1/2 of a very small potato maybe once a month and have little to no issues. I also know I can go to Europe and have some bread, but not here in the USA... But I also know (now) that if I have home made butternut squash soup, it will lay me on the ground for a week in pain.

Not until well over 3.5 yrs of 7-9 pain (back,buttock,shoulder,hands) did I even figure out there could be a starch connection....So...I will try to stay away from the hot poker for now.

I started listening to my body in my late 30's, I really listen to my body now. If my going through this helps just one person start listening to their body...I will feel I have kept someone from going through what I've had to go through.

Really, pspondylitis? You're going to claim that NSD/LSD causes stomach cancer? This is quite laughable in my opinion. I don't have the time nor energy to look for studies to back this up, but it's all pretty much common sense...Let's take a look at a few alternate things and tell me these haven't been proven to cause cancer or other horrible diseases:

First up on our list is...PROCESSED foods. Hmm, I think we can all agree that the vast majority of processed, pre-made foods on the SAD (Standard American Diet) is enough to cause a lot of people a lot of different types of cancers and diseases. My diet includes ZERO processed foods. Everything that goes into my mouth is processed my own damn self and is nothing but what comes straight from Mother Earth. From grapes, strawberries, pineapple, kale, spinach, a variety of lettuces, avocados, broccoli, nuts, and eggs, none has ever gone through any type of processing plant really, has never been touched by a machine except maybe slicing my free range organic meats, has never been altered in any way to zap the nutrients out of of it, etc, etc...nope don't think the SAD diet has a stronghold against cancer over MY diet.

Ok, next up on our list is: NSAIDS. Do I even need to go into explanation on this terrible, manufactured by humans, drug? I don't know if they have or haven't been proven to cause cancer, but we all know the serious side effects attributed to this nasty drug. Can you believe that even in a terrible flare which I just experienced due to eating starches, ahem, I didn't take one NSAID, stayed on a strict NSD, and used ice packs on my SI's and the pain and inflammation is almost completely gone today? My flare started on Tuesday. That's pretty incredible. Usually my flares last at least 2 weeks...and my flares are the kind where you can't even flinch in bed without extreme agony, can't get up off the toilet without my husband helping, and can barely start walking by noon. Yep this flare I had this week was a walk in the park, all due to ice packs and strict NSD.

Last but certainly not least we have Biologics. Just do your research and you'll see these awesome Immunosuppressents can actually cause....Hey! Cancer! That's probably one of the main reasons I refuse to take these and instead, wait for it: follow this terrible, crappy cancer-inducing diet. Why is there no one over in the main forum spreading the news that Biologics cause cancer?!?! Geez!

Yeah, I think I'll try a diet that 100% comes from Mother Earth and in my opinion is the way god intended for us to eat. Thanks for your insight pspondylitis, but your scares of cancer due to my eating habits don't do anything for me. I'm more worried about YOU, and any potential newbies that see your post.

Lauren S. we really need a thumbs up button on each post....because you are so right on target.

Haha, I agree. We need a "like" button like on Facebook!

I should have said, " could be harmful". Now you ask for evidence. Resistant starch reaches the large intestine. It may be protective from cancer. In just a few minutes of searching, I have found this study paper that shows that starches may protect against DNA damage in the gut ....."
resistant starch DNA protection

and here is another , saying health benefits of whole grains

health benefits of whole grains

This is only after ten minutes of looking, there could be many more papers.

So there are potential benefits to starch as well. So the question of whether the low starch diets are real or simply people having natural remissions, is all the more important to question ...

I completely disagree with this statement. Please do a literature search on Pubmed, and you will not find any papers that repeat the success of the original study. As you know, scientific proof is based on different groups testing out the idea. So how can you say scientific community has endorsed it. Who has endorsed it? You will find that all the papers are from one team, i.e. Dr. Erbinger. Please give us the links to any other papers that clinically prove that the starch diet works.

I don't mean to sound rude, but it seems to me that you are just not getting it. Several of us have stated that we are free from our symptoms as long as remain strict on the diet....which is called being in remission. Anytime you aren't experiencing your AS pains is called remission, however it happens, by means of diet, drugs, or your body naturally doing it itself.

As far as your statements of us just experiencing placebo, how do you explain that we are symptom free, as you are calling a placebo, but then the next time we eat starch either intentionally or unintentionally, our symptoms return. It is clearly not placebo, rather a cause and effect.

If you believe grains are good for you, then good for you! There have been a lot of studies claiming this or that is good for you, then at some point they turn around and change their mind.

What I did was stop listening to what other people, doctors, governments, pharmaceuticals, and others and instead started listening to MY BODY. I eat things that don't make me hurt and avoid things that do. That simple. Do I really care what the long term health risks are (I know there are none). NO, because I am pain free and have been for a while now ever since starting the diet. THAT'S what matters to me. And I did it without drugs and doctors. End of story.

I should have mentioned , that I meant colon cancer. I also should have mentioned "may increase risk of cancer". That is a serious mistake on my part.

Now the question is, can low starch diets increase risk of cancer ? Who knows, but, it is a possibility. Look at this link, which says that starch may have a protective effect.

benefits of resistant starch

What I meant to say , is that if starch diet is a placebo diet, then there is actual harm continuing it.

well. then don't. continue it. if you feel better and safer that way. that's all.

This board about sharing thoughts, not only discussing about oneself only. Unless the moderators of this forum think free thinking is not permitted in this board. I am continuing the diet, to see what effect it has.

then you should pay attention to what people tell you in that other thread regarding your diet.
Stop eating processed foods for one.
If i would eat sausages i would be on feet every 3 a.m. in the morning. From the pain, that is.

Some people may see NSD as something like: iodine turns black - don't eat. if not, eat it... it's not so simple. there's more than no starch for some of us. at least for me there is.

did you kept a food&health journal? did you rotate your foods at least 3 days to see if there's something offending in there?

and if you're doing something you're convinced it will not work, and it seems to me that you're convinced... why doing it at all?

I am my own litmus test, as to how going NS is for me. For every study you can pull up/out...I and others can pull up ones that disagree. I don't see moderators doing anything negative, unlike you who seems to love to take a bucket of cold water and dump it on someone who is trying NS/LS....Share all you want...on a thread you start..don't high jack someone elses thread.

I agree with Alinus....why bother when you have already decided it won't work for you?

On the other hand, the standard medical studies are being done on people who eat more processed food, which raises risk of DNA damage to begin with. If one can afford to eat fruit, vegetables, and meat from more naturally-raised livestock, then there are less toxins for your body to have to deal with (less but not none, some toxins are intrinsic to the food rather than manufactured pesticides and preservatives).

In fact, for those of us living in the United States, a leader in introducing new chemicals and genetic alterations to the food supply... the typical diet seems to be really, really bad for cancer risk. So being forced to stay away from conventional foods may actually be a blessing in disguise.

"Correlation is not causation but with the Centers for Disease Control now reporting that cancer is the leading cause of death by disease in children under the age of fifteen, that there has been a 265% increase in the rates of hospitalizations related to food allergic reaction, it is worth noting that 'no evidence of harm' is not the same as 'evidence of no harm.'
http://www.robynobrien.com/_blog/Articles_From_Past_to_Present/post/An_Idea_Worth_Spreading,_A_Dialogue_Worth_Having/

Yes but if you stopped drinking coffee and ALL your symptoms subsided or reduced significantly and only reappeared when you again drank coffee and this happened repeatedly...well then you might be onto something! This is what occurs when people do the NSD and it works for them.

I can understand your skepticism, as I felt a little bit this way when my husband Jon first started the diet. But the proof is in the pudding as they say and 8 years on he is still doing well as long as he sticks to the diet. When he strays (knowingly or accidentaly) his symptoms come back so it's not placebo. I don't think a placebo could last 8 years? I know the mind is powerful but that's bit much! Also prediet his AS was showing no signs of slowing down but was very aggressive and spreading throughout his body so a spontaneous remission seems unlikely. And actually even now I wouldn't say he is in remission. Remission is a complete absence of disease activity but his disease is still active. He still has daily low level pain 1st thing in the morning but not enough to need meds and it doesn't interfere with any aspects of his life.

I know some people talk about natural remission but from what I've seen on KickAS it isn't that common. Most remissions I have read about are drug induced and maintained (come off the drugs come out of remission) or diet induce and maintained. And from what I understand "burn out" when it does happen usually occurs after AS has finished ravishing the body and extensive fusion has occurred. Symptoms tend to move around the body when the disease is active. Having a knee inflamed and then it go down but then the neck is in trouble...well I wouldn't say that's remission as the disease is still active and affecting the body elsewhere which is typical of AS.



This is where we may have to agree to disagree. I do not believe the NSD is harmful in any way. When I look at Jon's diet now compared to his diet before there is just no comparison. He eats fruit and veg, meat, eggs, coconut flour and some dairy in the form of yoghurt and hard cheese. Very little processed food except for a bit of mayo here and there and such like. We don't actually find the diet difficult at all. Previously he was 20kg overweight and ate the typical diet of processed foods and refined starches with lots of bread, cakes etc etc. And his diet is not low carb as he still consumes fruit and sugar (in moderation) in the form of baking done with coconut flour (which is very high fibre BTW). So I don't believe he is in any danger of possible perceived risks from a low carb diet.

Of course whole grains are good for us (not that the average Jo Bloggs diet contains many but that's another topic!) and the NSD may not be the 'ideal' diet but Jon had a choice and neither one was great...take a cocktails of meds with their side effects (prednisone, NSAIDS, methotextrate etc) and hope they help without causing too much trouble or do this diet and hope it helps (without causing too much trouble). And it has .

It is true that the diet hasn't been proved scientifically by anyone other than Ebringer. Perhaps one day it will be and maybe it will turn out to be another reason that it works other than the Kleb theory, who knows. But in the meantime we just have Ebringer's theory to go on and a few other leads and much anecdotal evidence. For me, that's enough, along with seeing Jon's health and quality of life returned. Perhaps it's not enough for you and that's OK.

If you want to prove to yourself the connection between diet and AS symptoms then I would suggest a simple fast for 2 or 3 days. Some people do a fruit and water fast (just be sure the fruit tests OK). This has always been the quickest way out of a flare for Jon and it may help you also. He would usually do it with green seedless grapes but these can cause diarrhea for some people if they eat too many.

All the best

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.

Seems I am not the only one. Where and when did I say “ALL?”

I have found what ABSOLUTELY works for me. This information has helped HUNDREDS of others. Some few (in fact VERY few) have not had these stellar results, but I don’t penalize those who were helped, could be helped, and will be helped in the future by keeping quiet just because a couple of people were not helped. The CAVEAT is always there: This is ONE option that will either work for you or it will not. The NEXT STEP is NOT to abandon the potential root cause in digestive issues, but to continue their consideration.

The next step in eliminating the potential for alimentary tract involvement in your disease process is to FAST; water-only. To be fair and scientific about your methods, keep great records of every issue during the fast; there are some very obvious things that happen each of the first four days of the fast that one can only discover by doing.

So although we welcome open discussion about results, we have to set up some basic guidelines that are not as subjective and faulty as “Oh, I tried the diet a whole 41 hours and 26 minutes and it did not work for me. I even ate eggplant instead of bread!”

More and more I think about this and those people who are indicators, should establish a baseline ESR before going on the NSD and have it measured again, six months along. And the diet review is essential; so many people do not know that something as simple and common as caramel is not allowed, and fresh fruits should be tested. It can take many months just to learn what is allowed on the diet and another six months to personalize by finding what we each might react to uniquely: We must make the diet work for ourselves; nobody can provide a one-size-fits-all magic formula. Sometimes dairy affects one person and other times it is nightshade group plants. And other factors are things like the drugs that are still being consumed while attempting the regimen: So many of these are used with the purpose of reducing pain, but when on the diet we need that pain to tell us how effective the diet is, or notify us when we have slipped up.

So, while I value each and every person’s opinions, even those who do not agree with me, I have been at this long enough to have seen the NSD work in the majority of those who tried it in earnest, and often received letters from those who were not that serious about the diet saying that although they believe in it—the total abstention from starches was just too difficult for them. Some need that Holy Host (Communion wafer), others need their daily bread, some even complain that the NSD is too expensive and they need to eat cheaper foods! Believe that some people even claim their diabetes prevents them from NOT eating starch! So, there is nothing I can do about such people; they have been INFORMED and that is our goal—the rest is absolutely up to the individual and it is now and should remain a personal choice.

Think about when we have ABSOLUTE PROOF of the diet: Could our state then try and control what we are eating to keep us from becoming disabled? Although we should do this voluntarily as we are interested in our own health—the appetite is something hard to fight in people who are independent and also somewhat willful. Besides, my damage will not happen for many years—but AS is a freight train that has jumped track; it will sneak up on You and not be stopped so easily.

Purchase the Alternative Medicine Guide to Arthritis, I purchased it at Barnes and Noble 10 years ago when started looking at diet and alternatives when medications did in my liver.

That may offer you some different information you may want to put to trial as well.

Oh dear pspondylitis...I fear you are already lost. As you have been told repeatedly one month on the diet is not enough to expect results (esp as there have been some problem foods in your diet pointed out to you by other members). It took 3 months for me and my husband Jon just to figure out exactly what was and wasn't starchy and what he could and couldn't tolerate. Taking the antibiotic amoxiclav for one week will also not make a dent as this antibiotic is not effective against AS from my husband's experience.

A fast really would be your best bet at this stage to prove to yourself the diet/gut connection with AS....whatever the reason/theory behind it whether it be kleb, leaky gut or something else. When Jon first did a fast when his AS was really bad he actually jogged to the letter box on the 3rd day.....something that would have been impossible a few days earlier. That helped him see once and for all that what he ate really did affect his symptoms.

I predict you will be returning to you normal diet very shortly and that's OK as there are many other options for AS treatment....the biologics being one of the most successful. So I hope you will be able to try one of those. But I don't feel you can truthfully go around stating "the diet did'nt work for me" as you have neither done it properly or for long enough.

I wish you all the best in your search for an effective way to manage your AS.

i'm interpreting from this that simple starch restriction alone in the absence of other dietary changes does not usually have the desired effect. i think that is perfectly understandable and what would be expected given the complexity of dietary factors that can contribute to AS.

and sometimes its fruits or refined sugars, nuts, red meat, eggs, soy, shellfish, fried foods, raw vegetables, cooked vegetables, soluble fibre, insoluble fibre, spices, vinegar, alcohol, yeasts, coffee, tea, certain food additives and chemicals etc. on the other side of the coin some people seem to find that some starches don't cause them any problems such as rice.

my question is at what point does it stop becoming a low/no starch diet and start becoming an 'avoid whatever food gives you crook guts and makes your AS worse' diet? people seem to be having limited success with the former, and greater success with the latter. you could even call it the DOGMA diet (Don't Obliterate Gastrointestinal-tract with Mastication-induced Aggravation). Or perhaps the DEAF diet where you stop listening to anything your doctor says and just Don't Eat Aggravating Foods

I think the humour is lost on you psondylitis.

As a confirmed athiest, sceptic and natural dissenter I find it amusing to see myself painted as a disciple of some sort!

Give the diet a fair go. If it works great. If it doesn't no worries. Try something else. But be fair to yourself and others. Your diet does not even approach NSD. Feel free to criticise the LSD if you must.

In a few minutes I will do something I do not believe in...I will put steroid drops in my eyes. I will fast until after lunch as I do every day and continue to eat NSD. I have no articles of faith. Just simple pragmatism.

Keith

hi keith, i can't speak for pspondylitis but just wanted to clarify that my tongue in cheek comments were intended for John (he has a very thick skin (almost dragon like) and enjoys a good laugh) and not the vast majority of those who practice NSD that have a balanced perspective on diet and AS.

Wow, I could not have said that any better! Seriously, if you read the forums around here and believe it all, you'd die of starvation with the restrictions! In fact, I'm doing my best to try and gain weight due to the restrictions I'm currently under.

I'm doing what I should have done from the start - extensive food allergy tests. Yes, I paid some $$$, but I'll at least know what foods might not play well with me and I don't need to keep guessing (and paying with pain). If anyone is interested, I'll have the results in 3 weeks.

Yep it can get a bit like that brian. Sometimes people just get impatient and start cutting out all kinds of extra things to try and speed up the process instead of just sticking with no starch and giving it some time ie months instead of weeks. All Jon has done for the last 8 years is no starch and no dairy (altho he has now been able to add some dairy back in). That was enough. None of this cut out red meat, sugar, fruit etc etc etc. It can get a bit crazy when things get that restrictive and not healthy either in my opinion. But some people swear by it and really do feel better when they go to those extremes oddly enough.

Each to their own I guess

Absolutely no problem jroc. I was tongue in cheek to!

I don't know if it's true that more have success with the latter type of diet - may well be but it's pretty hard to quantify. I think with these types of forums you do attract worse cases. eg on the main forum there are some people that are really suffering bad cases of AS and they really need a forum like this to help cope. However, out in the world there are thousands of more mild cases that are managing to cope day by day and don't really need a support forum like KA. So reading the main forum can be a bit scary sometimes but it's often reflecting some worse case scenarios that are not always typical.

Same with the diet forum...there are loads of readers and not a lot of posters. I have seen success stories posted by members I've never heard of who hardly posted if at all - just came, read, did the plain old no starch diet, felt better and left to go live their lives with reduced pain. Then you have those who struggle with the diet and they tend to post more and ask more questions and need more than simple no starch.

So I'm not sure we can quantify how many are having success with a straight no starch diet or how many have to significantly tweak the diet to make it work for them.

Agreed. I think that is part of what pspondylitis was trying to point out. If we had an unbiased method of accurately keeping records of what dietary modification people tried and recorded their progress then it would be easier to quantify the results to see what the big picture looks like.

Something along those lines has been attempted previously. Here are the 2009 kickas diet poll results from - https://www.kickas.org/ubbthreads/ubbthreads.php?ubb=showflat&Number=353219#Post353219

I tried the diet and it worked immediately - 21%
I follow the diet, but had to “make it work” for me and even had to eliminate dairy - 18%
I follow my own modified LSD, because it helps to some extent- 28%
I tried the strictest diet for almost 1 month, and found cleansing diets and fasting helps - 4%
I tried the strictest diet for 3 months and it did not seem to help at all - 14%
I have no interest in this method of treatment - 15%

In that particular survey the non-responders and modified dieters outnumber straight NSD responders by a ratio of 3:1. Torturing the data another way, of those who experimented with diet - 84% reported improvement, a very promising statistic. As you pointed out there are numerous problems with these type of surveys such as selection bias, response bias, question bias and various others.

First pound for pound eating healthy costs less. Buy when in season and when on sale or purchase large quantity and freeze. The past year we have lived in the Deep South, our grocery bill actually increase 50% (for produce, meats, whole grain bread for my dh, et el) though we keep getting told the cost of living is much lower. Now mind you the chips,coke,crackers,cakes and highly produced foods are very, very cheap per package ( but not if you take it pound for pound, but americans just don't shop that way usually, it's more pkg cost (groceries) or pmt cost [ie cars, mortgages]). Produce here looks like what I would throw out in Washington State. Many people here grow their own vegs, which I do in Washington as well. But even when we have lived in Asia or other areas in the world the amount of processed foods were minimal compared to the USA...only here can you get 100's of different kinds breads,cereals, chips, canned goods, It's to bad we as a country don't see the correlation to these and health.

I am not being forced to stay away from the above mentioned foods or any foods..I make a choice and have always made these choices. I was brought up with parents who didn't allow these things into our home (except whole grain bread), everything was homemade, there was always at least 2 vegtables, boiled potatos were served at every meal and some meat on the table for dinner, we immigrated to the USA when I was 9. This WOE is still how I do things and how my parents do things. Prepackaged foods were a occassional treat..maybe 1 a month or every other month. I never had McD...until gasp..I was 19 yrs old. In my life maybe I've eaten fast food 3-4 times per year. Now I never eat at these places. I make enough food so my dh goes with a lunch for work every day (when I worked (retired last year), I would cook enough every Sunday for the entire work week lunches for both of us and dinners), just adding fresh vegs every day).

BTW..breathing is really bad for cancer risk as well.

Again, it's a choice. Now I choose to remove starch from my diet due to the pain of AS