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#244715 - 12/02/12 03:47 AM Re: Sticky wanted on Diet [Re: Chris Miller]
SeanP Offline
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Registered: 04/11/12
Posts: 30
Loc: uk
Found this to support -

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3085976/


Conclusion from this report was
"In this case report, a patient with a two-year history of enthesitis-related arthritis experienced a total resolution of symptoms after avoiding certain inciting antigens and correcting her nutritional deficiencies. Although the conventional approach to enthesitis-related arthritis manages to control patient symptoms and maintain function, years of chronic disease and reliance on medications is not ideal if remission is possible with less toxic measures. Enforcing dietary changes and taking required supplements to address specific nutritional deficiencies requires a high level of commitment on the part of patients and their families, but may offer a better quality of life than the current standard of care. Thus, prior to commencing potentially toxic pharmaceutical interventions, the authors suggest that it is reasonable to consider a detailed assessment and remediation of nutritional biochemistry; an eight-week trial of avoidance of common inciting antigens; and exploration and management of any underlying bio-accumulated toxicant load resulting from adverse environmental exposures."

Why cant this be the normal approach rather than the exception!
_________________________
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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#244721 - 12/02/12 08:18 AM Re: Sticky wanted on Diet [Re: Chris Miller]
seekonk Offline
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Registered: 12/06/10
Posts: 1254
There is probably no harm in trying, but case reports should always be taken with a grain of salt, since they are just anecdotes. One problem is that there is no consensus that "inciting antigens" in the diet have anything to do with AS. Many people have flares and spontaneous remissions anyway without dietary changes, and for every story like this case report you will find many people who tried to get better with dietary changes but failed. Better studies should be done on this, but they won't unless funded by governments, and good luck with that in this increasingly cutthroat capitalist society. By the way, the standard of care pharmaceutical interventions for AS, such as TNF blockers, have little or no toxicity.


Edited by seekonk (12/02/12 08:23 AM)
_________________________
Spondylitis since '08, finally diagnosed Feb '11.
Enbrel 50mg/week.

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#244765 - 12/03/12 09:57 AM Re: Sticky wanted on Diet [Re: butters]
JenInCincy Offline
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Registered: 05/19/08
Posts: 13279
Loc: Cincinnati, OH
Originally Posted By: butters
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.


If you start meds and mess with the diet at the same time you don't know which change resulted in improvement (if it is seen.) For this same reason I resist making more than one change in medications at a time, in order to isolate the impact of each drug.

A diet that is unlikely to be harmful to a consenting adult may not be so harmless in a 3 year old. In my reading the only conclusion I could reach was that dietary changes were unlikely to result in an improvement in my daughter's disease - so while the risk of harm may have been low, so was the risk of benefit. Some people with IBD see improvement after removing certain specific foods due to difficulty with digestion etc. but we have yet to find any food or foods that produce problems for her, so we have not seen any need to mess around with her diet.

Also from a pragmatic standpoint, I'm divorced and my kids are with their father 3 days a week. He has a hard enough time keeping up with doctor-prescribed medication regimens for things like ear infections. He would never consent to a special diet based on my wishes; and even if he did agree to try it he would not be capable of carrying it out.

As for the pubmed link - case reports are not evidence, as seekonk explained.
_________________________
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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#244791 - 12/03/12 02:54 PM Re: Sticky wanted on Diet [Re: JenInCincy]
butters Offline
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Registered: 05/16/12
Posts: 66
Quote:
A diet that is unlikely to be harmful to a consenting adult may not be so harmless in a 3 year old.

Definitely agree with this, I wouldn't put a child on an extreme starch restrictive or carbohydrate restrictive diet, was thinking more along the lines of the more low risk options like gluten-free/dairy-free, elimination diet, elemental diet etc. There are quite a few studies that suggest that dietary interventions (mostly elemental liquid diets) could be effective for crohn's -

'Diet in the management of Crohn's disease' - http://www.ncbi.nlm.nih.gov/pubmed/6526690
21 of 33 patients remained in remission on diet alone, the most important foods provoking symptoms were wheat and dairy products.

'Treatment of active Crohn's disease in children using partial enteral nutrition with liquid formula: a randomised controlled trial' - http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1856067/
42% remission rate on liquid formula diet.

'Chronic intermittent elemental diet improves growth failure in children with Crohn's disease' - http://www.ncbi.nlm.nih.gov/pubmed/3123302

'Remission induced by an elemental diet in small bowel Crohn's disease' - http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1778272/

'Improved Growth and Disease Activity After Intermittent Administration of a Defined Formula Diet in Children With Crohn's Disease' - http://www.ncbi.nlm.nih.gov/pubmed/1494204

'Mucosal healing and a fall in mucosal pro-inflammatory cytokine mRNA induced by a specific oral polymeric diet in paediatric Crohnís disease' - http://www.ncbi.nlm.nih.gov/pubmed/10735920
After 8 weeks 79% of children were in complete clinical remission.

'Polymeric nutrition as the primary therapy in children with small bowel Crohn's disease' - http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2036.1994.tb00338.x/abstract

'Improvement of abnormal lactulose/rhamnose permeability in active Crohn's disease of the small bowel by an elemental diet' - http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1433221/

'Controlled trial comparing an elemental diet with prednisolone in the treatment of active Crohn's disease' - http://www.ncbi.nlm.nih.gov/pubmed/2179093
The present study strongly suggests that elemental diet is superior to steroids for treating active Crohn's disease.

Quote:
Also from a pragmatic standpoint, I'm divorced and my kids are with their father 3 days a week. He has a hard enough time keeping up with doctor-prescribed medication regimens for things like ear infections. He would never consent to a special diet based on my wishes; and even if he did agree to try it he would not be capable of carrying it out.

Thanks for explaining, can definitely see how that would make it virtually impossible.

Quote:
As for the pubmed link - case reports are not evidence, as seekonk explained.

How is a documented and published case report not a form of evidence? I understand that no strong conclusions can be drawn from anecdotal evidence and case reports, that they are subject to many potential sources of bias and error and are inferior to double blind placebo controlled trials, but I don't see how they can be completely disregarded as evidence. It's bit like saying that a chihuahua isn't a dog - it may look more like a rat and be useless at hunting and chasing burglars, but it is still a dog.


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#244806 - 12/03/12 09:24 PM Re: Sticky wanted on Diet [Re: butters]
NotMeToo Offline
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Registered: 07/12/04
Posts: 1107
Loc: United States
Originally Posted By: butters
Quote:
A diet that is unlikely to be harmful to a consenting adult may not be so harmless in a 3 year old.

Definitely agree with this, I wouldn't put a child on an extreme starch restrictive or carbohydrate restrictive diet, was thinking more along the lines of the more low risk options like gluten-free/dairy-free, elimination diet, elemental diet etc.

I have to agree that dietary restriction that may be "unlikely to harm" an adult may not be harmless to a child - or a developing body of any age. Unlike adults with relatively stable dietary needs, children have different dietary needs at different stages of development. Even things that sound harmless like "dairy free", may not be harmless to a child in a developmental stage that requires higher amounts of fat, calcium, protein, vitamin D, etc. (pick one...) without an appropriate dietary replacement. I have no issue with appropriately medically supervised dietary modification for children when diagnosis or symptoms warrant it. I do have a problem with encouraging parents to try dietary change without involving a qualified medical doctor.

Human males stop growing in height when the epiphyseal plates (or growth plates) close - somewhere between the ages of 17 and 22. As most men on here will attest, the male body continues to develop and build strength and muscle mass well into the mid to late 20's. Females stop growing in height much sooner - about 2 years after they hit puberty (at about age 12 - 16). They too continue to develop and mature into their 20's. An ill-advised dietary restriction at the wrong point in a developing body's life could cause irreversible harm. Seeking the advice and guidance of the child's (or young adult's) doctor should be the first step - as it appeared to be in the case report cited above.

Originally Posted By: butters
Quote:
As for the pubmed link - case reports are not evidence, as seekonk explained.

How is a documented and published case report not a form of evidence? I understand that no strong conclusions can be drawn from anecdotal evidence and case reports, that they are subject to many potential sources of bias and error and are inferior to double blind placebo controlled trials, but I don't see how they can be completely disregarded as evidence.


You have essentially answered your own question. Case Reports are a medical professional's way of reporting or retelling anecdotal evidence. They are primarily a record of an individual patientís progress. Case reports are valuable in terms of documenting and conveying what is seen in actual medical practice. They should not be disregarded entirely, but they also should not be used to draw assumptions about either causes or cures/treatments. While a collection of case studies may well lead to in depth medical studies, standing alone, they are simply "stories".

From The Guidelines To The Writing Of Case Studies" http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2597880/
"While case studies cannot provide specific guidance for the management of successive patients, they are a record of clinical interactions which help us to frame questions for more rigorously designed clinical studies."

Originally Posted By: butters
It's bit like saying that a chihuahua isn't a dog - it may look more like a rat and be useless at hunting and chasing burglars, but it is still a dog.


A different way to look at it would be to have a yard full of an unknown (but large) number of dogs. Since the first dog that the dog-catcher scoops up in their net happens to be a chihuahua, should the observer assume that all of the other dogs are chihuahuas? Most of the other dogs? Any of the other dogs? No. Without further information (studies - or classifying the dogs) you can not make that sort of assumption - or really any assumption at all.
_________________________
Not Me Too!

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#244818 - 12/04/12 12:14 AM Re: Sticky wanted on Diet [Re: NotMeToo]
butters Offline
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Registered: 05/16/12
Posts: 66
Quote:
Even things that sound harmless like "dairy free", may not be harmless to a child in a developmental stage that requires higher amounts of fat, calcium, protein, vitamin D, etc. (pick one...) without an appropriate dietary replacement.

Unless you are talking about a child at breast feeding age who cannot breast feed for whatever reason then I don't see how there is any risk to a dairy free diet. Up until recently the majority of cultures consumed no dairy products e.g. most African and Asian cultures, Native Americans, Polynesians, Australian Aborigines. Even Europeans have only been consuming dairy products for around 10,000 years which is a blink of an eye on an evolutionary scale so I struggle to see how humans could have developed any sort of nutritional requirement for dairy products outside of the weaning phase.
Quote:
I have no issue with appropriately medically supervised dietary modification for children when diagnosis or symptoms warrant it. I do have a problem with encouraging parents to try dietary change without involving a qualified medical doctor.

I certainly wouldn't encourage leaving doctors out of the loop. I would have assumed that any dietary changes for a child would be discussed with their doctor or a qualified nutritionist.
Quote:
A different way to look at it would be to have a yard full of an unknown (but large) number of dogs. Since the first dog that the dog-catcher scoops up in their net happens to be a chihuahua, should the observer assume that all of the other dogs are chihuahuas? Most of the other dogs? Any of the other dogs? No. Without further information (studies - or classifying the dogs) you can not make that sort of assumption - or really any assumption at all.

I agree with the logic there. I guess it all depends on what claims are being made. Some people make ridiculous claims about the efficacies of particular diets, their mechanism of action, and their applicability to different diseases. I don't think starch-restrictive diets are the be all and end all. I think there are many different dietary factors that can play a role and that individuals will respond differently to different foods/diets. If I was to make a claim it would be along the lines of - "Dietary modification may be beneficial to spondyloarthropathy patients. A rational analysis of the potential risks of dietary changes (very small) compared to the potential benefits of dietary changes (very large) would suggest that this is something that is worth experimenting with."

Evidence that diet changes may be beneficial for spondyloarthropathy patients
- One small published diet study of 36 patients with statistically significant decreases in ESR, the majority experiencing a reduction in symptoms and some experiencing complete elimination of symptoms.
- Published claims that over 450 patients were treated with diet Middlesex Hospital with over half no longer requiring medication.
- Published case reports of improvements following dietary modification.
- Many anecdotal reports of improvements following dietary modification.
- Evidence that spondyloarthropathy is related to gut inflammation and many plausible mechanisms by which diet can affect gut inflammation and also systemic inflammation.

Obviously at this limited level of evidence, a practitioner of evidence based medicine isn't in a position to prescribe any specific dietary recommendations although doctors sometimes suggest experimental diet treatments that have a theoretical rationale such as in the case report above. So until better studies are done, each spondyloarthropathy patient has to decide how to proceed under the current conditions of incomplete information and decide what dietary changes they think are worth experimenting with.

"Understanding how to act under conditions of incomplete information is the highest and most urgent human pursuit" - Nassim Taleb

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#244831 - 12/04/12 06:11 AM Re: Sticky wanted on Diet [Re: JenInCincy]
SeanP Offline
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Registered: 04/11/12
Posts: 30
Loc: uk
Jen

I saw one of your other posts regarding a treatment that reacted with you - you said

"I once had a systemic hypersensitivity reaction to EYE DROPS (antibiotic, not steroid, but still - amazing how things can go body-wide!)"

http://www.ncbi.nlm.nih.gov/pubmed/22825366

and not least

http://www.biomedcentral.com/1741-7015/10/13

More than few chihuahuas there for the naysayers.

Wait 5 years and "evidence based" will have to get their heads out the sand and start revealing the evidence that I am sure many have known about for 10+ years.

I joked with a colleague about 15 years ago (he used laugh at my no wheat stance, before I we had Internet!) - I said that within my lifetime there will be a recognition of the damage that some of our staples are doing to us.




Edited by SeanP (12/04/12 06:42 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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#244834 - 12/04/12 06:59 AM Re: Sticky wanted on Diet [Re: butters]
JenInCincy Offline
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Registered: 05/19/08
Posts: 13279
Loc: Cincinnati, OH
All the article links have to do with the use of parenteral or elemental diets in IBD. I'm familiar with this approach. The benefit is not conferred by it being a NSD/LSD, but is mainly due to the "bowel rest" such a regimen permits. Though this may encourage mucosal healing/induce remission in IBD, most people won't maintain that remission upon reverting to a normal diet. 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."

Interesting that all the articles you linked to (but one) are over 20 years old. 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/

As my daughter was diagnosed in 2004 and had not had growth problems, nutritional approaches were not part of the treatment plan discussion. There is no way I would abandon the Remicade now, as it has worked so well, and since it IS working, I feel no need to mess with her diet. As it happens, she has had a hydrogen breath test and she is not intolerant to lactose.

Originally Posted By: butters
How is a documented and published case report not a form of evidence?


Technically it is a form of evidence, but it is a very low level of evidence. Here are two examples of the types of scales commonly used to grade evidence. The first has many levels but non is "single case study." In the second, case study is the weakest type of evidence listed.

Evidence Grading Scale
M: Meta-analysis
A: Randomized controlled trial: large sample size (n >100)
B: Randomized controlled trial: small sample size (n <100)
C: Prospective trial or large case series
D: Retrospective analysis
O: Other evidence
S: Review article
E: Expert opinion or consensus
F: Basic Laboratory research
L: Legal requirement
Q: Decision analysis
X: No evidence


Levels of Evidence
I Good-quality patient-oriented evidence.
II Limited-quality patient-oriented evidence.
III Other evidence including consensus guidelines, opinion, or case studies.


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.

Case studies should only be relied upon as evidence when there is essentially NOTHING else to inform a decision.


Originally Posted By: butters
Unless you are talking about a child at breast feeding age who cannot breast feed for whatever reason then I don't see how there is any risk to a dairy free diet.


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. In the USA most people consume a lot of dairy products, which can make up a large portion of a person's dietary fat consumption. Dietary fat is crucial for brain development and absorption of fat-soluble vitamins such as vitamin D. So, if you were to eliminate the primary source of dietary fat from your child's diet you would want to think carefully about replacing it.




Sean, I am already familiar with this information but don't understand why you are connecting it to my drug hypersensitivity reaction?

The new classification of wheat/gluten related health issues is a clarification of what was previously known. It is hardly a sweeping indictment of wheat or an indication that wheat is fundamentally bad - though I'm certain it is a larger problem than is even yet realized. Not at ALL clear what this has to do with SpA, IBD, and the LSD/NSD. I do believe that if people respond to the reduction/elimination of a particular food (or if they have a clear bad reaction to a certain food!) they may want to look into testing for hypersensitivity - or at a minimum, avoid the food.
_________________________
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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#244835 - 12/04/12 07:04 AM Re: Sticky wanted on Diet [Re: butters]
JenInCincy Offline
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Registered: 05/19/08
Posts: 13279
Loc: Cincinnati, OH
duplicate - deleted

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#244861 - 12/04/12 04:49 PM Re: Sticky wanted on Diet [Re: JenInCincy]
SeanP Offline
Registered Visitor

Registered: 04/11/12
Posts: 30
Loc: uk
Jen

Vitamin d is only present in milk due to fortification with vitamin D2 - which is not a particularly absorbable form. There is more absorbable calcium in broccoli and other green vegetables than milk - partly due to its balance of protein and magnesium. I haven't had a drink of milk for 20 years and have black coffee - my children do not drink milk either. If I eat ice cream or cream then my skin erupts - for me and others dairy = eczema. In the UK some people have started to move to goats milk to avoid the casein.

As you said - if you have a reaction to a food then remove it - especially if its poisoning you.

The reason I attached those links to your previous post was to highlight that there is gut damage from gluten even in non-celiacs - and there are other studies that show flattening of villi in non celiac and seemingly healthy people. I guess from your posts that you are already aware of this stuff - but given your wonder and surprise that a small amount of something can have such a systemic reaction in the body - made me think about your scepticism and reluctance to try diet & supplements for yourself and to some degree deter others.

My view is that as the research points towards for a lot of us

Susceptible genes + diet = gut damage = malabsorption = triggers allergy to some dietary proteins

Gut damage + some dietry proteins / bacteria = inflammation and autoimmune

Therefore removing the offending dietary allergens (might be different in each person - wheat, corn, dairy, eggs) and then if necessary reducing levels of bacteria that we might have developed auto-immune responses to. In AS the research has focused on Klebsiella but my AS came back out of 2 year remission following a severe tummy bug. In Rheumatoid the focus is Proteus Mirabilis and in PSA the target culprit is Streptococcus (also implicated in Autism nearly all have crohns).

As others have said - autoimmune reactions can work across the gut and other mucous membranes (nostrils) so there can always be a battle.

I can see that many that many on medication for a long time or have lots if damage from their arthritis - do not have as many options - but I feel very strongly that newly diagnosed or even undiagnosed people reading this thread should be aware of his information before buying wholesale in to standard medical treatments.

_________________________
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

Top
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