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Joined: Jan 2012
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Leovix Offline OP
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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.

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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!


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


Iritis first diagnosed in 1991, presently recurrent and steroid resistant.
Tested HLA B27 positive in 1996.
AS diagnosed October of 2011.

Putting most of my eggs in the NSD and exercise basket, using only TENS, massage, heat and ice, and NSAIDS (sparingly) for pain. Drops for iritis as flare necessitates. Looking back I feel I would have been diagnosed with AS years ago, if I had found a rheumy earlier than 2011.
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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.

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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.


Dx Oct 2006 B27+ undifferentiated spondlyarthropathy (uSpA) with mild sebhorrhoeic dermatitis and mild Inflammatory Bowel Disease (IBD) controlled by NSD since 2007.
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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.


NSD almost all the way
No dairy hard cheeses occasionally and homemade ghee
Still trying to work out what makes me tick and what makes me drop

'Chew your drinks and drink your foods'
'Let your knife & fork do the work of your teeth and let your teeth do the work of your stomach'
Mahatma Gandhi
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Originally Posted By: DavidP
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.



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.

Last edited by pspondylitis; 04/06/12 10:40 AM.

Age 56. Psoriatic spondylitis. HLA B27 negative. MRI negative.
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Quote:


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.

Last edited by Alida1; 04/07/12 01:01 AM.

Where your mind goes your life follows
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manage with diet and supplements
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Originally Posted By: pspondylitis

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.


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


AS may win some battles, but I will win the war.

KONK - Keep ON Kicking
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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.

Last edited by marb; 04/06/12 10:27 PM.
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