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#465443 - 03/22/12 05:07 PM Failures of NSD/LSD ?
pspondylitis Offline
Journeyman_AS_Kicker

Registered: 03/18/12
Posts: 123
I think to have a balanced view of this diet, we also need information from those in whom the diet has failed.

Please note, I am not here to bash this diet. I am here, because like you , I am desperate for something to work. However, I think we need to have a open mind about this diet. Most importantly , we need to hear about successes, but also failures as well.

I do not think the low / no starch diet is something without risks.

First of all, it is an extremely difficult diet to follow, as most on this forum will agree. It can lower ones quality of life, because the diet is so restrictive. So in addition to the spinal disease , one may suffer more unnecessarily if the diet is a mere placebo.

Secondly, I do not know what side effects the diet might increase. I.e. I find myself eating much more meat and eggs, with my fiber content decreasing. So, for example, does the diet increase the risk of cancer ?

Thirdly, if you do a medical literature search , there are no new studies on this diet, either to prove or disprove it.

The billion dollar question is, is it the diet that makes one feel better or is it the simple variation in the disease that makes one feel better, i.e. the symptoms would have improved, even without the diet.

This is a very important question, because if the diet does not work, then there are many out there who could be having a natural improvement in their disease and could eat whatever they want. (i.e. they are unnecessarily restricting their diet.)

It is unlikely that there will ever be the money needed for this diet to be investigated strictly. On the other hand , this forum is a valuable resource to collect data about this diet. We need to hear both, the success and failures of this diet. The reporting of BOTH of these needs to be encouraged. Only then can we hope to make any sense on the diet.

I repeat , I am not trying to destroy this diet and make people suffer. All I want to know is the truth, so that if it works, the sacrifice is worth it, or if it doesn't, at least people can enjoy good food. The bottom line, I really hope people will post details of both ,success stories and failure stories.

I myself an starting the diet. So far, I am four days into the diet, and there has been no reduction in the intensity of the flare. Let us see what happens.....
_________________________
Age 52. Psoriatic spondylitis. HLA B27 negative. MRI negative.

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#465460 - 03/22/12 07:03 PM Re: Failures of NSD/LSD ? [Re: pspondylitis]
Kiwi Offline


Registered: 07/26/04
Posts: 1934
Loc: Auckland, New Zealand
Originally Posted By: pspondylitis
First of all, it is an extremely difficult diet to follow, as most on this forum will agree. It can lower ones quality of life, because the diet is so restrictive. So in addition to the spinal disease , one may suffer more unnecessarily if the diet is a mere placebo.


It's true it's a real life change to follow this diet. Although my husband Jon has been on it for 8 years now and we don't find it difficult at all - it's a way of life now. So give yourself time and you'll get used to it. The diet doesn't have to be restrictive..just cutting out starch only leaves loads and loads of food out there. You just have to rediscover it.

I can tell you right now that there is no way this is a placebo....can a placebo last 8 years? As soon as Jon wavers from the diet his AS symptoms rear their ugly head again so we are confident that the NSD is what is keep his AS as bay.

I wholeheartedly DISAGREE with the notion that it lowers quality of life. There is more to life than eating donuts. Jon has gotten his quality of life back through this diet...not lost it. He can walk, run, work etc etc all the things AS took away he has gotten back. But what a bummer he can't eat french fries? Honestly, it doesn't compare....not an issue.


Originally Posted By: pspondylitis
Secondly, I do not know what side effects the diet might increase. I.e. I find myself eating much more meat and eggs, with my fiber content decreasing. So, for example, does the diet increase the risk of cancer ?


There are ways to combat the fibre issue if you do a little more research. You should actually still be eating plenty of fibre in the form of fruit and veg but if you need more then you can bake with coconut flour which is 38.5% fibre (wheat bran is 27%). I think actually the NSD may be higher in fibre than the average highly processed fake food diet that many people seem to get by on these days (not saying that is you at all, just the average Jo Bloggs).

Side effects of meds used long term are more scary to me.

Originally Posted By: pspondylitis
Thirdly, if you do a medical literature search , there are no new studies on this diet, either to prove or disprove it.


Personally, I don't care what medical literature is out there on this subject but maybe that's just me. I don't actually care why or how it works....I just know that it does. I'll go along with the kleb theory for now as it seems logical. Seeing my husband going from literally not being able to walk due to his AS symptoms to being back to work full time and now barely even registering that he has AS is enough to convince me on a daily basis that this diet works for him....whatever the reason is. Kicking the pain meds for good was a great thing too.

Originally Posted By: pspondylitis
The billion dollar question is, is it the diet that makes one feel better or is it the simple variation in the disease that makes one feel better, i.e. the symptoms would have improved, even without the diet.


I personally feel that the answer is no...it's not natural variation in the disease that is making people feel better. It's the diet. Like I said, if Jon strays from it his AS symptoms return with a roar. I hope that you are someone that responds well to the diet and that you will find this answer for yourself also.




Originally Posted By: pspondylitis
I myself an starting the diet. So far, I am four days into the diet, and there has been no reduction in the intensity of the flare. Let us see what happens.....


Well, I'm not surprised as 4 days is way too soon to expect noticeable results. It's typically a gradual improvement for people over the course of months not days. Often in the first couple of months people are still trying to figure out exactly what is and isn't starchy and are often still eating starch without realising it hence inhibiting their progress. So give it a good proper try (be sure not to cheat and also test with iodine so you can be confident you are not unknowingly sabotaging yourself by eating starches) and see how you feel after 3 months. So keep an open mind and don't expect a miracle cure. The diet is a management tool for AS just like the meds are. You may get to remission or you may just get enough improvement to come off your meds or to reduce them.

You may find it helpful to get a copy of Carol Sinclair's book The IBS Low Starch Diet if you haven't already got one. Good for newbies. You may also find this a good starting point if you haven't already seen it: NSD Food Guide

I understand your skepticism as I was the same 8 years ago.

All the best


Edited by Kiwi (03/22/12 07:07 PM)
_________________________
Chelsea smile


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#465469 - 03/23/12 01:15 AM Re: Failures of NSD/LSD ? [Re: pspondylitis]
chicharito Offline
Apprentice_AS_Kicker

Registered: 11/02/11
Posts: 95
Loc: Mexico
It works. It cannot be coincidence, so if you are tired of your pain give it a try.

You won't know until you try it.

You can get plenty of fiber if you want, in fact you will benefit a lot from it. I get it from avocados, prunes, apples and raw broccoli mostly.

I understand that you are thinking that you've got enough with the pain already, and restricting you from eating comfort foods sucks, but you'll get used to it and you wont miss starch after a while.

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#465470 - 03/23/12 02:26 AM Re: Failures of NSD/LSD ? [Re: pspondylitis]
Alinus Offline
Ninja_AS_Kicker

Registered: 01/09/10
Posts: 839
Loc: Romania, Suceava
@pspondylitis
good questions smile

@kiwi
good answers smile
_________________________
34. Some rheumys say AS stage 1-2 some others say USpA
Also UC - rectocolitis.

UC curently in remission since feb 2011.
AS/USpA remission march-aug 2011. Flare - sept-nov 2011 (antibiotics). Remission now...

Modified NSD/SCD. Cook your own !
____________________________________________________________
Mesalazine-Salofalk 500 mg/day

And the list of my medication has become verry short after some years on this diet smile

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#465471 - 03/23/12 02:27 AM Re: Failures of NSD/LSD ? [Re: pspondylitis]
Grumpyally Offline
Black_Belt_AS_Kicker

Registered: 01/24/12
Posts: 419
Loc: UK
I agree with the others, it works so long as you are strict and adhere to it. For some of those people for whom it doesn't work it could be just down to the difficulty of sticking to it. I think when you are free of pain it feels much worse when it comes back again so it could seem as though there is no improvement. Also there is something called a 'herxheimer reaction' where you feel worse before you feel better as a reaction to eloiminating the bad stuff. You should aim for the majority of what you eat to be fruit and veg. The cancer risks increase if you eat lots of meat etc aim for at least a 60/40 split fruit veg to other stuff even better if you can make it 80/20.

There are many people who follow this type of diet purely for other reasons the way vegetarians dont eat meat. Look up Paleo or raw foodies some who dont eat meat at all, for example and you will find many who testify to that making a difference to their health (many starting from no known health problems).

It is hard and seems restrictive at first but when you get into it and with the web being so full of information you will soon find lots of recipes and info to help you along the way.

I do find that sometimes you feel as though you are in a completely different 'world' to most people you know, you on the one hand eating healthily and everyone else eating all the processed stuff and hardly any fruit and veg. I try to look upon it as I am eating far better than them for my body as opposed to watching them eat something I can't with jealousy. (not always easy mind)
_________________________
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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#465474 - 03/23/12 03:55 AM Re: Failures of NSD/LSD ? [Re: Alinus]
MollyC1i Offline
Very_Addicted_to_AS_Kickin

Registered: 01/21/04
Posts: 9841
Loc: Brittany, France (since Nov 08...
Quote (Alinus) :@pspondylitis
good questions

@kiwi
good answers

---------------#

In total agreement - and emphasise, excellent response from kiwi
_________________________
MollyC1i - Riding OutAS

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#465476 - 03/23/12 04:40 AM Re: Failures of NSD/LSD ? [Re: pspondylitis]
The_Inflammator Offline
First_Degree_AS_Kicker

Registered: 06/27/11
Posts: 155
Loc: Northern Virginia
I'll admit it. It worked fully for me but I couldn't maintain it. It was too restrictive in carbs and energy and made me feel like crap in every other way besides AS pain. A long lifetime of that is just too much.

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#465478 - 03/23/12 05:10 AM Re: Failures of NSD/LSD ? [Re: pspondylitis]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 21346
Loc: Upstate NY
i had food allergen / sensitivity testing done. i am severely sensitive to casein (in dairy, presumably cow in particular). and somewhat sensitive to eggs (both the whites (proteins) and yolk.

thus until i eliminated dairy (maybe just cow) and eggs from my diet, no diet could work for me.

i am currently on a LSD and off eggs and dairy.

i am better in between flares, but still flare.

NSD plus no eggs or dairy? maybe.

thus maybe the NSD doesn't work for some because they are still eating things that their body elicits an inflammatory response to. like me with the casein.

and a low starch diet is very easy, IMHO. not much food that i "miss". there is a huge world of veggies out there. and i love fish and seafood. and adore fruit. and nothing like a good cup of tea to soothe the soul. other than the occasional french fry craving, i really don't miss the starches.


as for a "healthy" way to eat LSD / NSD? of course i think we all have a different definition of healthy, but my thoughts on it:

instead of adding in lots of red meat, animal fats, i focus on fish and chicken and turkey and a little grass fed beef, limited red meat. i do eat nuts. then i load up on veggies and eat fruit in moderation. my "fat" of choice is olive oil. some coconut. for a treat i eat coconut milk or nut milk "ice cream". so i've tried to just add in foods that are considered "healthier" by the majority. though the paleo diet would argue that there is nothing wrong with the red meat, i'm in the other camp, but that's just me.


Edited by Sue22 (03/23/12 05:16 AM)
_________________________

sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)

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#465492 - 03/23/12 09:34 AM Re: Failures of NSD/LSD ? [Re: pspondylitis]
bettyrawker Offline
Magical_AS_Kicker

Registered: 03/12/12
Posts: 751
Loc: Oregon
Hi pspondylitis,

This video was done my a doctor who beat her auto-immune MS disease with the LSD/Paleo diet is amazing proof that the right diet can beat an auto-immune disease. http://www.youtube.com/watch?feature=player_embedded&v=KLjgBLwH3Wc (this same doctor is also doing clinical trials on the amazing effects of diet used to fight disease)

I am excited to hear about your expereinces & successes with diet! After spending years reading about & experiencing the effects of diet on disease, I also highly encourage you to avoid any dairy products while you test out the NSD diet for yourself. If you truly want to see progress, just say no to milk for at least the intro phases, and later you can decide if you can add it back in or not.

Best of Luck!
-Andrea


Edited by bettyrawker (03/23/12 01:15 PM)
_________________________
I'm now a KICK AS (and Kick IBD) success story!! After going low starch Paleo to heal my gut, I can now eat nearly all starches, grains & foods without inflammation, flare-ups, or pain. I used a modified SCD diet approach (minus dairy! plus cacao ♥). Cheers to healing & thriving again! I blog at http://www.forestandfauna.com/about/

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#465497 - 03/23/12 09:48 AM Re: Failures of NSD/LSD ? [Re: pspondylitis]
Alida1 Offline
First_Degree_AS_Kicker

Registered: 09/07/11
Posts: 166
@pspondylitis....3/4 of what I eat is vegs and fruits the other 1/4 is nuts, fish, chicken or red meat (occassionally). My blood levels are favorable. I would even place my blood levels against anyones who eats a "modern diet" any day of the week. If it is not fresh, I will not eat it. So no packaged or made by others for me, the exception is smoked salmon and harring in white wine vinegar and some dried fruits.

Do I become frustrated that I watch my husband and others eat things I can not, yes. Have I cried out because it feels so unfair not to be able to eat some certain thing, yes. I have caved now a couple of times. As I did this past weekend while visiting my father. We always go to a Seafood place near his home, I always order a platter that is fried (this is a 1 or 2 times a year thing). The last time we visited I ordered it broiled, not my cup of tea. This time I ordered it fried. Today I stand here in pain. It is not worth going from a pain level of 1-2 back to a 7-9, no matter what the food is. Next time I will order it broiled.

It may have been easier for me because I had eaten low carb and gluten free for years, so I was already off of pasta, bread, wheat products in the past. Now granted over the 3+ yrs I was in such terrible pain, I had stopped eating this way...go figure.

If you can't eat NS/LS by choice (because you can't give up ------) that's one thing or if it really does not work for you, that's totally different.

Every day people are told they need to make changes in the way they eat, and exercise more or xyz will happen. Every day people make choices not to listen to their doctors and end up using HBP meds, diabetes meds, statins and the list goes on.

@Kiwi...though I have only been doing NS since Novemeber...What you said is so right on the money.
_________________________
Where your mind goes your life follows

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