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#465627 - 03/25/12 12:13 PM
Re: Failures of NSD/LSD ?
[Re: Alinus]
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Warrior_AS_Kicker
Registered: 09/24/07
Posts: 468
Loc: Sale, Victoria, Australia
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I agree with Alinus - that many people have to eliminate more than starch. I avoid most sugary fruits, also beer. My diet is mostly protein and some fat but much reduced vegetable / fruit matter.
My feeling is that possibly a whole class of bacteria is involved - perhaps all Gram Negative members of the family Enterobacteraciae. This would include Klebsiella, Proteus, Enterobacter, and other species - all have lipopolysaccaride (LPS) as part of their Gram Negative cell wall. The disease could be triggered by an infective diarrhoreal episode with one of the Gram Negative pathogens such as Salmonella, Shigella, Yersinia or Campylobacter.
After the initial diarrhoreal episode resolves the gut of spondylarthritic patients somehow loses it's tolerance for what are normally considered part of the commensal (=normal) gut flora. The balance between gut Th17 and Treg cells is lost and tipped in favour of a state of chronic gut inflammation - often without overt gut symptoms.
The immune machinery goes into overdrive to try to cope with the perceived 'infection' in the gut, this leads to ER stress in some cell lines - increased protein (particularly B27) misfolding because the cellular machinery is trying to present more foreign peptides to the immune system - eventually this process somehow manifests as AS disease.
Once this chronic state of gut 'infection' is commenced it seems very hard to turn it off again. Avoiding starch and sugar is one way to starve certain sugar loving bacterial species into a dormant state. That is, you won't remove them completely, but you maybe able to lower their turn over to a point where they no longer pose the same level of threat (by lowering ER stress) to the immune system.
If you give the gut bacteria some starch or sugar, the offending bacterial species quickly go into overdrive (remember they can reproduce in as little as 20 minutes) and some hours or days later you will pay the price.
But that pizza sure did taste good!
_________________________
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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#465650 - 03/25/12 08:42 PM
Re: Failures of NSD/LSD ?
[Re: jroc]
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Warrior_AS_Kicker
Registered: 09/24/07
Posts: 468
Loc: Sale, Victoria, Australia
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Thanks jroc for demolishing my diet.
I don't think modern science has much of a handle on how the body interacts with the many bacterial species (upwards of 1000) capable of constituting the gut commensals.
I have arrived at my own diet after 4 years of ongoing experimentation - searching for a way to try to downplay ongoing peripheral joint inflammation. Whether it matches supposed modern concepts of a healthy diet, well, frankly, I couldn't give a s....
_________________________
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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#465652 - 03/25/12 10:22 PM
Re: Failures of NSD/LSD ?
[Re: DavidP]
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Commanding_AS_Kicker
Registered: 10/30/08
Posts: 682
Loc: New Zealand
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I don't think modern science has much of a handle on how the body interacts with the many bacterial species (upwards of 1000) capable of constituting the gut commensals. I agree. Hopefully new research can shed some light on it. Sorry, I wan't meaning to bash your personal choice of diet but to point out to some of the new comers who had displayed an interest in the science behind the diet that sometimes the justifications given are at odds with the scientific evidence and that extreme diets aren't without a significant element of risk. I'm a big fan of your self experimentation approach, which you have obviously been very successful with as well as your excellent summaries and commentary on the latest AS research which I have learned a lot from.
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#465655 - 03/25/12 10:57 PM
Re: Failures of NSD/LSD ?
[Re: jroc]
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Silver_AS_Kicker
Registered: 02/25/06
Posts: 1416
Loc: Montana
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I stumbled on a couple of these awhile back. This is one reason I don't mind going no starch but simply won't go no carb long term. I think it is risky. Low testosterone can also lead to osteoporosis in men and we have enough risk of that already.
Edited by drizzit (03/25/12 10:58 PM)
_________________________
No families take so little medicine as those of doctors, except those of apothecaries.
Oliver Wendell Holmes
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#465656 - 03/25/12 11:28 PM
Re: Failures of NSD/LSD ?
[Re: drizzit]
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Commanding_AS_Kicker
Registered: 10/30/08
Posts: 682
Loc: New Zealand
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Low testosterone can also lead to osteoporosis in men Testosterone is also important for Il-10 function, an important anti-inflammatory interleukin - http://www.ncbi.nlm.nih.gov/pubmed/11489988
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#465711 - 03/26/12 05:16 PM
Re: Failures of NSD/LSD ?
[Re: jroc]
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New_Member
Registered: 01/31/12
Posts: 15
Loc: spain
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...that extreme diets aren't without a significant element of risk. Actually, this discussion is fascinating, but a little daunting for beginners. I came here for help after my son started symptoms. As I explained, my husband also has AS. He's HLA-B27 +. He's 56 now. Fused spine. An osteotomy of the hip at age 30. A long history of chronic pain, fatigue and depression. Colitis at age 53. Disability to work from age 50. The remedies of medical science: NSAIDs, analgesics, corticosteroids, antidepressants. However, he is quite skeptical about the diet. My son is 17. HLA-B27 +, with symptoms 4 months ago. It is now almost 2 months without starch and NSAIDs two weeks ago. The child has begun to find the connection between starch and pain. Of course, diet is difficult for a teenager, but I hope you can help. My question in this discussion is: Can we really compare the risks and discomforts of diet, that seeks to eliminate a bacteria, to the risks of developing the disease or the risks of taking drugs for years? In fact, modern science has been unable to find an answer to the cause of this disease beyond the klebsiella. I think diet it's worth trying Thanks so much information and share knowledge. And I apologize for my bad English. Health! Maiga
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#465716 - 03/26/12 06:51 PM
Re: Failures of NSD/LSD ?
[Re: pspondylitis]
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Third_Degree_AS_Kicker
Registered: 08/26/11
Posts: 261
Loc: Virginia
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Maiga, your English is just fine. I agree with you that modern science still has yet to find the root cause of AS. So why not try the diet? Of course there won't be enough "official" studies on the diet if they haven't even identified the cause. Thankfully Ebringers findings were enough for me and I am on my way to perfect health again, if not already there. The only reason I continue to come to this forum is to encourage newbies. Other than that, I'm exhausted at trying to convince certain people that it works and just to try it. At this point if I come across people who try over and over again to convince themselves it won't work or there aren't enough studies, etc, etc, I really just don't care If they want to sit in pain the rest of their lives. The point is, if you want to see if it works, you just have to try it and give it a fair chance! It took me at least a month for me to GRADUALLY see a difference. Eventually the flair went away completely after giving up diary and I haven't looked back since.
_________________________
Lauren S.
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#465719 - 03/26/12 08:10 PM
Re: Failures of NSD/LSD ?
[Re: dosmil_onze]
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AS Czar
Registered: 09/05/01
Posts: 5134
Loc: So Cal (high chaparral)
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Hello, Maiga: My question in this discussion is: Can we really compare the risks and discomforts of diet, that seeks to eliminate a bacteria, to the risks of developing the disease or the risks of taking drugs for years? There is no real risk to this diet, but the disease can cause painful disability, as Your husband knows too well, and the drugs--in my case--actually accelerated this disease, so I am a living example of the worst thing to do--I followed my doctors' advice; I trusted them and they completely let me down! You can find doctors to tell You any lie You want to hear about AS or anything else (like stress causes ulcers!...r--r--i-ght!), but they do not have to live in our bodies and they always bury their mistakes. Medical science already has the answer, but it is the liberalization of science and outright scientific fraud that allows equivocation of the facts until the truth is made ineffective by paralysis. Those of us with AS do not have time for DEBATE; we must ACT and it is unfortunate we do not get the support from physicians in general (but I will not generalize here; there is at least one rheumatologist in this world who is good...think he is in Australia). Best to You, John
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#465722 - 03/26/12 09:09 PM
Re: Failures of NSD/LSD ?
[Re: pspondylitis]
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Commanding_AS_Kicker
Registered: 10/30/08
Posts: 682
Loc: New Zealand
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Can we really compare the risks and discomforts of diet, that seeks to eliminate a bacteria, to the risks of developing the disease or the risks of taking drugs for years? it would depend on how extreme the diet is. i would class the low starch diet for AS that underwent a 9 month clinical trial as basically zero risk and probably an improvement on the standard western diet. a no starch diet that still includes at least 30% of calories from carbohydrates is low risk, whilst a virtually zero carbohydrate diet is high risk long term. the complications of leaving severe disease and systemic inflammation untreated are considerable and should be taken into consideration when conducting a risk/benefit analysis of different diets. as you point out, the risks of taking drugs long term are also considerable. for those with severe disease the potential benefits are going to be greater than for those with only mild disease who do not require drugs to manage it. diet can have a huge impact on bacterial species composition, quantity, and gut inflammation. there is now overwhelming evidence that gut inflammation and the interaction of the immune system with bacteria play a key role in AS. because of this, diet is an important and powerful tool in managing the disease. here are my reservations about starch restrictive diets - they are often justified on the basis of the 1 gene, 1 bacteria, 1 mechanism theory which is stuck in the 80's. we now know that there are multiple genes that contribute to AS susceptibility, there are many species of bacteria that are capable of causing gut inflammation and many species of enterobacteriaceae share nonapeptides (9 amino acids in sequence) with HLA-B27 compared with only 6 for klebsiella pullulanase. - the success achieved by starch restrictive diets (which is genuine and not entirely due to placebo effect) is sometimes offered as proof of the 1 gene, 1 bacteria, 1 mechanism, 1 diet theory. these results are consistent with the hypothesis, but are not proof as there are far too many changing variables. - they often lead to the idea that if low starch is good, then no starch must be better. this is pretty big leap. only LSD has been evaluated in a clinical setting. - they can lead to starch phobia and a mind set that starch per se is the most important dietary factor to consider when there are many other dietary and nutritional factors that are equally or more important. - if the diet fails to work which happens regularly it is sometimes explained away by an anomaly such as NSAID damage, mercury toxicity or compliance, rather than recognising that each individual is unique in their gut bacteria, genetics, and lifestyle and will respond differently to different diets and that starch restriction can even be detrimental in some cases. - sometimes people are not aware of the potential negative effects of NSD such as the problems with excessive carbohydrate restriction, often high meat intake, unhealthy weight loss and potentially increased levels of enterobacteriaceae. as you can see my main quibbles are with the science behind the diet. for many that is not important and i understand and respect that. i think that experimenting with diet should be encouraged as long is it isn't taken to extremes and it is great that there is a forum like this where people can share their experiences of which diet worked from them.
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