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#244870 - 12/04/12 07:03 PM Re: Sticky wanted on Diet [Re: JenInCincy]
butters Offline
Registered Visitor

Registered: 05/16/12
Posts: 66
Quote:
All the article links have to do with the use of parenteral or elemental diets in IBD. I'm familiar with this approach.

None of the articles were about parenteral nutrition, they were about enteral, elemental and polymeric nutrition.
Quote:
The benefit is not conferred by it being a NSD/LSD, but is mainly due to the "bowel rest" such a regimen permits.

I am not an advocate/supporter of starch-restrictive diets or claiming that these studies are evidence of their efficacy, the point of linking to the studies was to show that gut inflammation can be affected by variations in the type of food entering the intestines. The 2nd article addresses the idea of "bowel rest" -

"In the past, the effect of “bowel rest” on active Crohn's disease was studied in adult patients. Patients were randomised to TEN, total parenteral nutrition, or a combination of parenteral nutrition and normal food, and remission rates in each group were not significantly different (approximately 65%). Although the study was underpowered, it was concluded that “bowel rest” was not an important factor in nutritional therapy for active Crohn's disease."
Quote:
Though this may encourage mucosal healing/induce remission in IBD, most people won't maintain that remission upon reverting to a normal diet.

Yes that's right, indicating that the changes in diet can have a dramatic effect on disease activity.
Quote:
The authors of the 2nd article you referenced below concluded as much: "[L]ong term nutritional supplementation, although beneficial to some patients, is unlikely to suppress inflammation and so prevent disease relapse."

What they were referring to was a diet that was 50% enteral nutrition and 50% unrestricted diet. The effects of a 50% unrestricted diet negated most of the benefits of the 50% enteral diet. Using intermittent periods of a 100% enteral diet seems to be much more effective.
Quote:
Interesting that all the articles you linked to (but one) are over 20 years old.

Actually 3 of them were from the 2000's. Some of the old research from the 70's and 80's is awesome. My favourite is the crazy Canadian researchers that deliberately inoculated themselves with ureaplasma to test the effect of antibiotics on reactive arthritis - http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1049094/
Quote:
Here is a nice (free access) summary of the evidence from 2009, which supports the use of enteral nutrition for induction (but not maintenance) of remission - especially in children with growth retardation due to IBD: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2691486/

Thanks. Why do you say "but not for maintenance" when the study seems to be pro EN for maintenance - "the available evidence suggests that supplementary EN may be effective for maintenance of remission in CD."
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Technically it is a form of evidence, but it is a very low level of evidence.

Agreed

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The difficulty with relying upon case reports and anecdotal evidence is that for every success story there are other stories of failure; but we don't know how many. So an author publishes a case report; but suppose s/he had 99 other patients with the same problem, given the same treatment, who did not respond positively? That would start to look like data/evidence - unless it wasn't published because it didn't support the author's hypothesis/bias.

Agreed, the success/failure rate for any particular dietary regime is unknown and will naturally be biased toward over reporting success and under reporting failures. This can also be true of pharmaceutical treatments as drug companies aren't obliged to publish trials which have negative outcomes -

"Sometimes, drug companies conduct lots of trials, and when they see that the results are unflattering, they simply fail to publish them... And this data is withheld from everyone in medicine, from top to bottom. NICE, for example, is the National Institute for Health and Clinical Excellence, created by the British government to conduct careful, unbiased summaries of all the evidence on new treatments. It is unable either to identify or to access data on a drug's effectiveness that's been withheld by researchers or companies: Nice has no more legal right to that data than you or I do, even though it is making decisions about effectiveness, and cost-effectiveness, on behalf of the NHS, for millions of people.

In any sensible world, when researchers are conducting trials on a new tablet for a drug company, for example, we'd expect universal contracts, making it clear that all researchers are obliged to publish their results, and that industry sponsors – which have a huge interest in positive results – must have no control over the data. But, despite everything we know about industry-funded research being systematically biased, this does not happen. In fact, the opposite is true: it is entirely normal for researchers and academics conducting industry-funded trials to sign contracts subjecting them to gagging clauses that forbid them to publish, discuss or analyse data from their trials without the permission of the funder." - Ben Goldacre


Quote:
Come on ... don't be so literal. NMT was just using it as an easy example of something people might eliminate, not saying a dairy free diet is, in general, risky.

Sorry, I must have interpreted it wrong. I guess I have a bee in my bonnet about the idea that dairy products are an essential food group, which seems to be quite wide spread.

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#251954 - 05/09/13 09:00 AM article on AS and diet therapy
bamboospine Offline
Registered Visitor

Registered: 08/03/12
Posts: 6
Hello all.

Here is an article I wrote about my experience treating AS with diet:

http://www.thepointmag.com/2012/essays/plea-human-food

It was published in January, but the magazine has just now made it free online. It's a kind of layman's introduction to autoimmunity and diet therapy.

I am trying to spread the word about using diet to treat AS as best I can, so if anyone out there has a way of getting this link to more people, please help!

Thanks,
Charlie

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#251976 - 05/09/13 02:57 PM Re: article on AS and diet therapy [Re: Chris Miller]
RAHMBA Offline
Registered Visitor

Registered: 06/27/12
Posts: 474
Loc: Los Angeles, CA
Hi Bamboospine, That's quite a story. It's so long, I'm afraid that I haven't yet read it in detail... I did a bit of skimming in parts :-) I hope people find relief from modifying their diet. I've found a food sensitivity that sets off flares. I did notice that 'Sinclair recently discovered via genetic testing that she had AS all along.' I see that concept confused a lot. There is not a genetic test that determines AS. Most people that have AS have certain genetic markers, but the reverse is not true. Most people with those same genetic markers do not ever get AS. Oddly, having the gene alone (without other signs) means that you are statistically likely not to have AS. So, having a genetic test alone can't tell if a person is going to get or had AS. Also, as a long time member of the SAA, I personally think the wording was a bit harsh with the SAA. Before the SAA, there was no support for people with AS, next to no information on AS and very, very little being done to find a cure. Diet is an issue that comes up at my SAA support group meetings and people discuss their experiences openly. Thanks for bringing awareness to AS and for writing the article. I really found the history very interesting and thought provoking.
_________________________
AS, U C, Iritis, migraines. HLA-B27neg. Yoga (instructor) & spin. No meds at this time. Dx 1989. SAA member/donor since 1993. All my posts are personal opinion/feelings and do not represent the SAA. Help find a cure & support others by donating to the SAA.

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#251979 - 05/09/13 03:34 PM Re: article on AS and diet therapy [Re: bamboospine]
seymour Offline
Registered Visitor

Registered: 06/20/12
Posts: 418
Originally Posted By: bamboospine
Hello all.

Here is an article I wrote about my experience treating AS with diet:

http://www.thepointmag.com/2012/essays/plea-human-food

It was published in January, but the magazine has just now made it free online. It's a kind of layman's introduction to autoimmunity and diet therapy.

I am trying to spread the word about using diet to treat AS as best I can, so if anyone out there has a way of getting this link to more people, please help!

Thanks,
Charlie


Great article!

Do you really have bamboo spine or is it just a nickname like that?

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#251997 - 05/09/13 09:18 PM Re: article on AS and diet therapy [Re: RAHMBA]
Tacitus Online
Registered Visitor

Registered: 06/06/03
Posts: 2860
Loc: Reno/San Fernando LU PI
RAHMBA:

Quote:
Oddly, having the gene alone (without other signs) means that you are statistically likely not to have AS.


This is a scientific impossibility, as-stated. Ebringer has claimed that, with the antigen, the chances for developing Crohn's Disease are reduced considerably. Or, if You mean that, with the progression of age after perhaps frequency peak 19-23, the potential becomes less likely a person with the antigen will develop AS...well that should also be disputed!

It is worth noting that FIFTY percent of HLA B27+ males (in Holland) at some time during their lives seek medical attention for severe "back pain." This compares with FIVE percent in the verified HLA B27- population. AS is transient and variable and often causes no pain even while severe damage progresses.

In re Carol Sinclair: She cannot get an "official" AS diagnosis because she has refused to allow her SIJs to fuse; she does not need the diagnosis anyway, but it would be helpful--and is of considerable value--to know that she is HLA B27+, as was (probably) her hunched-over father and nephews, who also have enough knowledge and sense to properly treat their AS before 'benign neglect' results in obvious easy diagnosis.

The condition of "PRE-AS" should be recognized in the near future, and by then the medical guilds might be capable of preventing the characteristic fusion (permanent damage). The antigen makes PRE-AS much easier to diagnose, but the challenge is to the patient now to prevent AS (99% of rheumatologists are helpless in this quest).

HEALTH,
John
_________________________
Nota Bene: I am not a medical doctor, and my views do not represent the opinions of the SAA
AS Resources
My Long, Boring AS Story
Professor Alan Ebringer Diet and AS


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#252046 - 05/12/13 10:43 AM Re: Sticky wanted on Diet [Re: ]
saltire Offline
Registered Visitor

Registered: 05/09/13
Posts: 38
Loc: Scotland
Originally Posted By: rivercanoeist

Hi John, thanks for your feedback. I am sorry to hear of what AS has done to you, it has given me a monstrous wake-up call- AS does not burn out and miraculously disappear- it needs to be treated or it will get the better of you.

Regarding the NSAID issue, as a new AS sufferer, I am caught between Joel Godin's low starch diet (which, for someone active is tough because I need carbs to perform in the pool etc) and NSAIDs.

I copied this from the website of the brand of NSAID that I am using:

"Traditional NSAIDs, such as ibuprofen or diclofenac, block the action of both COX-1 and COX-2, and this is why they can sometimes cause side effects such as stomach irritation and peptic ulcers. Etoricoxib belongs to a new generation of NSAIDs that selectively block the action of COX-2. This means that it stops the production of inflammatory prostaglandins, without stopping the production of prostaglandins that protect the stomach and intestines. It therefore reduces pain and inflammation, but is less likely than traditional NSAIDs to cause side effects on the stomach and intestines (although such side effects are still possible).

This medicine can be taken with or without food, but may start to work quicker if taken without food."

2 things: 1stly, what do you think about the promise of cox 2 being blocked? and avoiding the severe damage like you have experienced? granted that your damage was caused by NSAIDs, I am assuming that these are the traditional ones referred to, this may be naivety on my part, but it could just be that arcoxia (with Etoricoxib as the chief ingredient)- may avoid what you went through. I have been on arcoxia for 2 years on and off now, and have considered going for blood tests that could reveal organ damage (apparently they can do this sort of thing- incredible)- if not for piece of mind, it could be the kind of thing that makes my life with AS more bearable.

Secondly, the company (still referring to the quote),is so cocky about the fact that the stomach isnt damaged that they are willing to say "This medicine can be taken with or without food, but may start to work quicker if taken without food."

anyone with half a brain cell knows that you dont take medication on an empty stomach- this is asking for trouble- this kind of statement concerns me because ppl may actually adhere to this advice and get long-term damage because of it. The cockiness of this comment makes me wonder if they aren't trying to hard to show that the stomach isnt damaged.Like they have something to prove because of criticism about long-term use.

but seriously, what options do I have? The diet is incredibly difficult to start, let alone stick to- everything has starch in it- most vegetables will become starchy when cooked, one is reduced to becoming a mixture btw a rabbit and a carnivore- I would love to know what health implications apply to depriving the body of starches in general and to consuming higher quantities of meat (obviously not as bad as AS, but still a factor to be considered)

I look forward to hearing what you have to say,

regards,

Stuart


no no no AS can and does go into remission all by itself sometimes WITHOUT the so called wonder diets.....mine went into remission for a whole ten years and diet played no part whatsoever.i am so sick of the hard sell

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#260260 - 11/03/13 05:53 AM Re: Sticky wanted on Diet [Re: saltire]
southafrican Offline
Registered Visitor

Registered: 11/03/13
Posts: 12

"no no no AS can and does go into remission all by itself sometimes WITHOUT the so called wonder diets.....mine went into remission for a whole ten years and diet played no part whatsoever.i am so sick of the hard sell"

Saltire.....thanks for the response to my post...how old were you when you went into remission? and have you had a relapse?

many thanks,

the Southafrican

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#263917 - 01/28/14 01:07 PM Re: article on AS and diet therapy [Re: Tacitus]
RAHMBA Offline
Registered Visitor

Registered: 06/27/12
Posts: 474
Loc: Los Angeles, CA
Hi Tacitus,

Perhaps I am misinterpreting this. If approx 6% of the population is HLAB27+, and only 1/2% of that same population has AS. Included in that 1/2% are people that have AS and are HLAB27-. Doesn't that mean most of the people that are HLAB27+ do not have AS?

How do you understand this?
Thanks!


Edited by RAHMBA (01/28/14 01:08 PM)
_________________________
AS, U C, Iritis, migraines. HLA-B27neg. Yoga (instructor) & spin. No meds at this time. Dx 1989. SAA member/donor since 1993. All my posts are personal opinion/feelings and do not represent the SAA. Help find a cure & support others by donating to the SAA.

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#263945 - 01/29/14 11:41 AM Re: article on AS and diet therapy [Re: RAHMBA]
Tacitus Online
Registered Visitor

Registered: 06/06/03
Posts: 2860
Loc: Reno/San Fernando LU PI
Hi, RAHMBA:

Not certain the crux of the question, but I will try to answer it as I interpret this.

IF 6% (world population?) are HLA B27+, and some percentage of these develop severe AS...but for arguments sake let's say 50% develop clinical AS: We have pre-filtered the population: B27+/AS+ only.

The assessment for B27-/AS+ individuals is separate and will add to the overall AS population, but not affect the original sample. I don't know how, for instance, knowing the ultimate population of AS patients, it would break down, but I think about 8% would be B27-/AS+

It is kind of splitting hairs because AS is a disease which is difficult to diagnose, especially in the early stages, and its prevalence within the overall population is not easily estimated because of myriad misdiagnoses--especially fibromyalgia for women and "growing pains" or injury-related "referred{" pains in young men.

From the data Professor Ebringer has provided, about 25% of persons with AS develop clinical symptoms of the disease (lower for non-"AS already" family roots and higher for disease already appeared within blood relatives).

In his experience at the AS Middlesex Clinic over nearly 20 years 50% of patients who were B27-/AS+ actually retested B27+; the cheaper 'serological' method is flawed and produced many false negatives. To avoid obfuscation, Ebringer et al did not do their studies on B27-/AS+ subjects, because the B27 architecture was well-documented and molecular mimicry explained that mechanism adequately. I am certain that B60, B39, others even B51 (Behcet's Disease) all have the same hexamer sequence--exposed--just as in the B27 Osp, but these are relatively rare compared with B27.

SIMPLE ANSWER: I believe that Your final statement is correct--that "most" people with B27 do not develop AS, but 50% of them will at some time during their adult years seek medical assistance for severe backache, compared with 5% from non-B27 groups.

When I last saw Professor Ebringer, I told him I have become the "other twin"--the one without AS!

HEALTH,
John
_________________________
Nota Bene: I am not a medical doctor, and my views do not represent the opinions of the SAA
AS Resources
My Long, Boring AS Story
Professor Alan Ebringer Diet and AS


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#263980 - 01/31/14 10:45 AM Re: article on AS and diet therapy [Re: Chris Miller]
RAHMBA Offline
Registered Visitor

Registered: 06/27/12
Posts: 474
Loc: Los Angeles, CA
Thanks Tacitus, Thank you for your thoughts. I wouldn't go as far as you, but I get where you are coming from. I think the differences between the USA and the UK population may explain some of this. Congratulations on being the 'non AS twin'! I have the pleasure of meeting Dr. Ebringer at the ACR conference. We certainly have some very dedicated researchers & rheumatologists working on AS. I just wish there were more of them and there was more funding.
_________________________
AS, U C, Iritis, migraines. HLA-B27neg. Yoga (instructor) & spin. No meds at this time. Dx 1989. SAA member/donor since 1993. All my posts are personal opinion/feelings and do not represent the SAA. Help find a cure & support others by donating to the SAA.

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