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#244512 - 11/27/12 01:14 PM Re: Sticky wanted on Diet [Re: Chris Miller]
JenInCincy Offline
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Registered: 05/19/08
Posts: 13279
Loc: Cincinnati, OH
No, of course not. You misunderstood what I wrote. I didn't mean that it will never be possible to back up the claims with research. They cannot be backed up at this time by rigorous research that has been conducted and published in peer reviewed scientific journals - because no such research exists. Of course, there is also no published research that shows the diet does NOT work as claimed by some. There is really no scientific data at all - only theories, opinions, and beliefs.

I am not making any claims of fact; I'm not "against" the diet or anything like that. I just think it's important to be clear on the difference between known facts and speculation, wishes, hopes, etc.

Research is definitely needed to provide evidence to support or refute such claims. Until that research exists, however, the statements about the low starch diet are opinions, not facts.
_________________________
Jen, 42, happy partner of James and Moma to Evan, 14, & Lucy, 12.5 (Crohn's dx @ age 3; on Remicade since April 2010.) I take piroxicam, Flexeril, & Nucynta ER nightly. 3 anti-TNFs didn't pan out for me.

"Science is the father of knowledge, but opinion breeds ignorance." -- Hippocrates

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#244540 - 11/28/12 05:15 AM Re: Sticky wanted on Diet [Re: KarenW]
SeanP Offline
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Registered: 04/11/12
Posts: 30
Loc: uk
Hi Karen

I am in the UK and new to this forum.

The UK - NASS Website goes one stage further and follows the line that Jen was alluding to. They actually say that diet cannot be studied!

It says of the Ebringer Research -

"It is difficult to research into diet. When new medicines are tested the researchers might give one group the new medicine and another group a dummy or placebo medicine. Even the doctors treating the patients in the medical trial might not be told which patients are taking the trial medicine and which the dummy medicine so that this knowledge does not influence the results. This is known as a double blind trial. We know from research that double blind trials, in which neither the patient, nor the observer knows which treatment has been given, is the best way to show if a treatment actually works.

However, when researchers experiment with diet and try to look at how diet can influence disease, it is impossible to carry out certain research protocols such as using controls or dummy treatments. Neither the person eating the diet nor the person taking measurements after the diet can be blinded as to which diet has been used. It's also not possible to confirm that someone is sticking rigidly to the diet without any lapses.

For this reason NASS can neither give its sanction nor refute the hypothesis that the low starch diet will help patients with AS. It remains a hotly debated subject among doctors. We do however offer the main principles below. It is always important to check with your doctor or member of the rheumatology team before trying any new diet."


And this is tucked away at the bottom of the NASS pages on diet, underneath their primary advice to eat a balanced diet with grains etc. Their stance on any diet research is effectively condeming any success on diet as 'anecdotal'. In light of the pain being sufferred by 10's possibly 100's of thousands - this is truly criminal.

Even their advice on the NSD is dreadful - 'No restriction on beverages'. Beer and Guiness (grain based) caused my hips to flare for weeks. I just have to live with wine and chocolate for my treats instead grin

We are all being duped in to the authoratative nature of these big budget sometimes 'pharma' backed websites.

I urge anyone reading this to give diet a go - I am not NSD but have had good success on strict elinination of Corn, Wheat, most dairy, barley, rye etc. I do avoid all starches for periods if I have a flare and it works - not always immediately and as Tacticus said on another one of his passionate posts might take 200 hours or more. I recognise that I am one of the lucky ones - and am committed (as I can see others are on this thread) to help others.

If you have Crohns - do NSD or look up SCD. Heal the gut first then work eliminating possible food allergies that you may have developed from the damaged gut.

I have a question for others on the this thread - do you think that there are other factors to the autoimmune than just Klebsiella. From my experience I think there might be other "Molecular Mimicry" responses to food proteins?

My observations are that my ongoing semi-contained now mild AS effect certain joints (back, sometimes ribs, sternum), yet if I ingest wheat it throws lots of other joints and organs off. Dairy attacks my skin.

There is a chap that posted on another site that has a website blog called 100percenthealth.us and he has been eliminating allergies with some success as well as a LSD.

I saw some of Tacticus earlier posts - from back in 2006. Classic work and the softer sell is starting to bite!

Strength to you all - there is not a cure but there is another way!


Edited by SeanP (11/28/12 09:12 AM)
_________________________
Strength to you all! Whatever you try...

About 75% better than the worst I have been... but still flare from time to time - I do NSD or LSD in emergencies but always restrict wheat, corn, rye and other grains. Have helped friends with my experiences - 20 years now!
Here is a link to my story -
http://www.arthritisforum.org.uk/stories/storysean.html

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#244552 - 11/28/12 10:11 AM Re: Sticky wanted on Diet [Re: Chris Miller]
JenInCincy Offline
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Registered: 05/19/08
Posts: 13279
Loc: Cincinnati, OH
What you quoted from NASS is correct. It IS pretty much impossible to do a double-blinded, placebo-controlled study on the NSD the way you would with a drug. It is pretty easy to give a placebo substitute for most pills, injections, etc. But it obviously would not be feasible to keep someone in the dark as to whether or not they were on the diet. If certain foods are not permitted, they have to know it so they don't eat it.

That doesn't mean that all study is impossible; and NASS didn't say that, either. They said double-blind placebo-controlled studies are the best, and that is true. But prospective observational studies can be done, and they're better than nothing. Ideally a study of the diet would include subjects who agree to be randomly assigned to a normal diet, or the NSD.

You can't expect the NASS or any other legitimate organization to endorse the NSD when there is no research backing up its efficacy. That would be irresponsible of them. What you quoted is clear - they can neither endorse nor refute it. Seems reasonable and fair. That said, it is also irresponsible for them to give incorrect "guidance" on the diet!
_________________________
Jen, 42, happy partner of James and Moma to Evan, 14, & Lucy, 12.5 (Crohn's dx @ age 3; on Remicade since April 2010.) I take piroxicam, Flexeril, & Nucynta ER nightly. 3 anti-TNFs didn't pan out for me.

"Science is the father of knowledge, but opinion breeds ignorance." -- Hippocrates

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#244563 - 11/28/12 01:33 PM Re: Sticky wanted on Diet [Re: SeanP]
NotMeToo Offline
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Registered: 07/12/04
Posts: 1107
Loc: United States
Originally Posted By: SeanP
Even their advice on the NSD is dreadful - 'No restriction on beverages'. Beer and Guiness (grain based) caused my hips to flare for weeks. I just have to live with wine and chocolate for my treats instead grin
Sean, the NSD dietary advice on the NASS website is the same as Ebringer's "London AS Diet" as published on the KickAS.org website. http://www.kickas.org/londondiet.shtml
Originally Posted By: KickAS.org
"NO RESTRICTIONS ON BEVERAGES OR SPICES (Pepper, salt or herbs)"
Although you may feel that you have problems with drinking beer/Guiness, that was apparently not Dr Ebringer's advice in the "London AS Diet". NASS, like the SAA, has been pretty careful to take a neutral position on the diet - as is appropriate for an as yet unproven (though not apparently harmful) theory.
_________________________
Not Me Too!

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#244570 - 11/28/12 04:31 PM Re: Sticky wanted on Diet [Re: NotMeToo]
SeanP Offline
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Registered: 04/11/12
Posts: 30
Loc: uk
Thanks - I stand corrected on the Ebringer Diet. I confuse my own regime with the original NSD.

For me this raises a few red flags - as I have strong view that a factor in the initial damage to the gut is linked to gluten intolerance, as this is too common to be ignored in non AS sufferers let alone us more sensitive soles.

I have followed a strict grain free (including beverages) for about 20 years now - my AS kicked in at 19 - but I caught it at 26 with my diet and supplements. I think the supplements - especially magnesium may not only help to keep my bones and ligaments (manganese too) stronger against the disease but it also creates a high alkaline gut thus creating a hostile environment for klebsiella to thrive.

I found the SCD diet by Elaine Gotterscall before I first saw the NSD diet and this too eliminates all starches including complex sugars polysaccharides that can feed the klebsiella and other gram negative bacteria. It differentiates grain based beverage from other alcohol like wine and apple cider.

These are some of the many reasons why I would not recommend beers on an elimination diet for fighting AS.

As for the neutral position taken by NASS and SAA on "the diet" - it is not what it says it is how it says it - I would say it damns with faint praise.

For reading further to inspire anyone who might want to understand how what we eat impacts health -

[*]Google Dogtorj.com - an amazing vet that improved his own health once he realised what was making dogs ill!

[*]Also search for Terry Wahls - who treated her own advanced MS with diet

[*]Lastly - seek out the 100's of success stories on Kickas.org and plenty here too - we are not anecdotes we are fact - each one of us is evidence of another way to try and fight this horrible disease. It's not an easy way...

I have a question for the non diet followers here - what do you think an initial AS sufferer at age 17 or a JIA suffering 12 year old should be advised first by the medical profession? I see children with sore knees being prescribed Methodrexate by doctors that because of the unproven (unstudied) diet options - although well meaning might be initiating the common cycle I see of 1 drug then the next drug - then the experimental drug later on - damaging the gut lining of that child as they attempt to "do good".

If Ebringer and others are right then I think his protocols should be attempted at the very first stages before we potentially go down these well trodden paths. I must also add that Ebringer has published other Molecular Mimicry work in 2010 related to Rheumatoid Arthritis and cross reaction to a bacteria "proteus mirabilis". Similarly the streptococcus bacteria is implicated in Psioratic arthritis. Let alone auto-immune reaction as a result of complex food proteins such as casein and gliadin.

The genie is out of he bottle and It will be difficult to cover this up much longer - I believe the real saviours will come from the celiac and gluten research areas as their focus is diet - although I am beginning to doubt some of their motives too. They are developing a pill that allows people to carry on eating foods that cause celiac - they have also proved that there are many prior stages to celiac and they want all potential celiacs to take this pill too. Clever so and so's making money out our addiction to our western diet. Ref - Dr. Fasano - University of Maryland.

Strength to you all - whatever you try!
_________________________
Strength to you all! Whatever you try...

About 75% better than the worst I have been... but still flare from time to time - I do NSD or LSD in emergencies but always restrict wheat, corn, rye and other grains. Have helped friends with my experiences - 20 years now!
Here is a link to my story -
http://www.arthritisforum.org.uk/stories/storysean.html

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#244592 - 11/29/12 07:05 AM Re: Sticky wanted on Diet [Re: SeanP]
JenInCincy Offline
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Registered: 05/19/08
Posts: 13279
Loc: Cincinnati, OH
Originally Posted By: SeanP
I have a question for the non diet followers here - what do you think an initial AS sufferer at age 17 or a JIA suffering 12 year old should be advised first by the medical profession?


Initial treatment recommendations for these and every disease should be based upon the available evidence. If certain treatment options are supported by strong evidence they should be tried first. If the most strongly supported options do not work, cause side effects, etc. then you move on to other treatments with less supporting data.

Quote:
If Ebringer and others are right then I think his protocols should be attempted at the very first stages....


I agree - IF they are right. The trouble is that using a dietary approach as the initial treatment is unsupportable based on the existing evidence (or, in this case, due to the LACK of evidence recommending this approach.)

Quote:
The genie is out of he bottle and It will be difficult to cover this up much longer


What genie? Nothing is being "covered up." Ebringer's theories are out in the world. We just need the research to provide an evidence basis for whether or not (or when) the dietary approach should be recommended/tried.

Quote:
They are developing a pill that allows people to carry on eating foods that cause celiac .... Ref - Dr. Fasano - University of Maryland.


Fascinating!! Can you provide more info on this? I'd love to read more.

Although I'm not an adherent to the diet, I'm not against it; maybe I'll even try it one day! I see no reason informed adults shouldn't try dietary approaches if they so desire. Like NMT said, the NSD is unlikely to be harmful provided the person trying it is careful to meet their basic nutritional needs.
_________________________
Jen, 42, happy partner of James and Moma to Evan, 14, & Lucy, 12.5 (Crohn's dx @ age 3; on Remicade since April 2010.) I take piroxicam, Flexeril, & Nucynta ER nightly. 3 anti-TNFs didn't pan out for me.

"Science is the father of knowledge, but opinion breeds ignorance." -- Hippocrates

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#244617 - 11/29/12 02:53 PM Re: Sticky wanted on Diet [Re: Chris Miller]
SeanP Offline
Registered Visitor

Registered: 04/11/12
Posts: 30
Loc: uk
Jen - I find your answer interesting. All I can say is that we are poles apart on this.

It is a shame to hear that you would submit a child to the possible treadmill of drug treatment - I don't know how representative the horrendous stories of drugs not working that I see and hear from others I know - do you know the stats?

I have a 13 year old and 10 year old - if they ever get any autoimmune disease then I am 99% sure i would put them on an elimination diet - before allowing a doctor to give any of the strong stuff. I've seen my Dad suffer too much on meds - and I've seen too many stories apart from my own that provide me sufficient evidence that a few weeks perhaps 4 of a trial would be much much safer than starting meds. For me meds would be the last resort not the first.

If there are no studies done on dietary approaches then shame on the medical profession for that - we can have this debate forever and you will use the same "no evidence" put down time and time again. The genie is the truth - the cover up is the lack of study in the face of 1000's of success stories.

I am slightly confused by your presence on most posts on diet - especially as you have not given it a good try yourself. It would be a bit like me going on to one of the other threads and telling someone considering Humira that I didn't really think it was any good - I won't do that because I have no experience. Are you diet curious - your persistence is muddying the waters for anyone that wants to give dietary approach a try?

There is a lot of debate in the world as to what a balanced diet is - Paleo is proving to be quite successful with many people feeling better than ever.

I admit that for me the Ebringer research is not cut and dried - and there are more factors in play, including food intolerance / allergy and other bacteria apart from klebsiella. So instead of saying Ebringers research has not been replicated - take a look at the success of elimination diets of different types on all sorts of auto immune diseases. You will see a pattern. There are more than just the AS success stories out there.

For me the research of Dr Fasano is interesting - but is also hugely disturbing, suggesting that up to 10% of the western world should take a pill to allow them to keep eating wheat - when there are other researchers proving that anti-gliadin antibodies are common in many non celiacs - especially those with auto immune diseases - why not just stop eating it! Links as requested -

http://www.webmd.com/digestive-disorders/video/pill-celiac

http://celiacdisease.about.com/b/2011/03...sensitivity.htm

http://www.direct-ms.org/sites/default/files/Fasano%20Celiac%20other%20autoimmune%20disease.pdf

When put with this - Juvenille Arthritis

http://europepmc.org/abstract/MED/1764847

I am sure those researchers were happy that gut permeability was present before the meds.

There does not seem to be any one group trying to link different research and studies they all have there own narrow aim!








Edited by SeanP (11/29/12 03:29 PM)
_________________________
Strength to you all! Whatever you try...

About 75% better than the worst I have been... but still flare from time to time - I do NSD or LSD in emergencies but always restrict wheat, corn, rye and other grains. Have helped friends with my experiences - 20 years now!
Here is a link to my story -
http://www.arthritisforum.org.uk/stories/storysean.html

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#244646 - 11/30/12 08:03 AM Re: Sticky wanted on Diet [Re: Chris Miller]
JenInCincy Offline
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Registered: 05/19/08
Posts: 13279
Loc: Cincinnati, OH
Sean, I agree that our opinions on the dietary approach are very different. I prefer to rely on interventions backed by research showing their efficacy and safety. And yes, I know the stats.

I don't need to have experience with the diet to post about it. I post about it to clarify misconceptions - that opinions and experiences, wishes and hopes, are not the same as valid scientific data and evidence. My own personal experience & opinions are irrelevant on the topic. I'm here to remind people that any support of the diet is not based on scientifically established fact.

If you went out there and expressed an opinion that Humira was bad it would be just that - your opinion. There is evidence behind Humira's claims of efficacy that can be used by anyone weighing the decision to use it or not use it. Opinions are more or less irrelevant unless they are solicited - but if solicited your opinion would be valid as anyone's would be; you just couldn't claim personal experience as the reason for that opinion. But people have a lot of reasons for the opinions they hold - their personal experience is just one part of it.

You may not be aware of how judgmental your post was. You see, I am also a parent - of an 11 year old and a 13 year old. My 11 year old DOES have an autoimmune diagnosis - Crohn's disease. She was diagnosed a week after her 3rd birthday but was symptomatic starting in her (exclusively breastfed) infancy. There is a lot of evidence regarding the efficacy and safety of all the medications she has been on over the years.

Lucy's first med post-diagnosis was prednisolone - obviously a scary one but given the state of her health at that time and the known remission-inducing capability of steroids for this disease, the choice was not a hard one for me. Fortunately she was able to taper relatively quickly and did not suffer any untoward side effects in her growth & development (or otherwise.)

At that time she also started an immunomodulator, 6-MP, which worked well for years and then started to fail, so was augmented with a 5-ASA medication (mesalamine) and a delayed-release steroid, Entocort, specifically formulated for IBD. Those things didn't do so great either so we brought out the big guns and started Remicade about 2.5 years ago. It has been AMAZING for her. I did all my homework on Remicade - I started reading the scholarly work on it years before she went on it, because I knew it was pretty likely she'd eventually require anti-TNF therapy (at diagnosis her disease was categorized as moderate-to-severe.) It was a VERY informed decision. The possible serious side effects are scary but thankfully very very rare. Fortunately she has done well on Remicade - great efficacy and no complications.

Obviously the LSD/NSD diet is pushed for IBD as for SpA, if not more. I would have LOVED to use a dietary approach. I own, and have read, Sinclair's book, believe it or not. However, there was simply no way to justify even a few weeks of a dietary approach. In the face of months of delay to the diagnosis, frequent bloody diapers and a child with daily stomach pain, we needed an approach supported by data. Sure, all the drugs had potential risks but they were outweighed by the potential benefits, and in the end, those have been good decisions.

So please do not think that you know what you would do if your child had one of these diseases. It is easy to blithely say you would do the diet first. Maybe you would feel differently if you had to change a few bloody diapers.
_________________________
Jen, 42, happy partner of James and Moma to Evan, 14, & Lucy, 12.5 (Crohn's dx @ age 3; on Remicade since April 2010.) I take piroxicam, Flexeril, & Nucynta ER nightly. 3 anti-TNFs didn't pan out for me.

"Science is the father of knowledge, but opinion breeds ignorance." -- Hippocrates

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#244679 - 11/30/12 06:00 PM Re: Sticky wanted on Diet [Re: JenInCincy]
butters Offline
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Registered: 05/16/12
Posts: 66
Just seeking some clarification as I think I must be missing something.

Quote:
I would have LOVED to use a dietary approach. I own, and have read, Sinclair's book, believe it or not. However, there was simply no way to justify even a few weeks of a dietary approach.


I can completely understand and agree with not delaying evidence based pharmaceutical treatments in order to experiment with unproven dietary approaches. What I don't understand is why taking medications and experimenting with diet would be mutually exclusive events and why a risk/benefit analysis of dietary approaches that you consider to be "unlikely to be harmful" would not come out in favour of giving them try.

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#244683 - 12/01/12 02:12 AM Re: Sticky wanted on Diet [Re: butters]
SeanP Offline
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Registered: 04/11/12
Posts: 30
Loc: uk
Butters

I agree and I did not say diet only for chronic conditions - all I said was don't roll out the strong stuff for less chronic onset conditions. Which is what I have seen testament to on other forums. Try a diet approach soon enough and hopefully you would not need to resort to strong stuff in some cases.

The "unlikely to be harmful" phraseology might leave enough doubt regarding a dietary approach for some viewers of this site to put them off trying. Lets try "it won't be harmful to try" - and before I get pounced on - whilst you are trying then , if conditions worsen enough to warrant involving stronger medication then as Jen says it would obviously be incorrect to let anyone suffer.

Also when trying diet - I am not saying no medication but I would say that any medication that damages the gut should be avoided - otherwise you would never know if a dietary approach was ever going to work for the individual. On some of the medications it would probably be irrelevant as until you heal the gut - disease will prevail.


Edited by SeanP (12/01/12 06:32 AM)
_________________________
Strength to you all! Whatever you try...

About 75% better than the worst I have been... but still flare from time to time - I do NSD or LSD in emergencies but always restrict wheat, corn, rye and other grains. Have helped friends with my experiences - 20 years now!
Here is a link to my story -
http://www.arthritisforum.org.uk/stories/storysean.html

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