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#314307 10/10/08 12:28 AM
Joined: Feb 2008
Posts: 484
Warrior_AS_Kicker
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Hello all, I'm sure I've touched on this idea before but am coming at it from a different angle. As a prelude to the question- I've recently bought 'The New IBS Low Starch Diet' and have wanted it for a long time. I have been too busy to get very into it but have managed the first few pages where it says that if you are HLA-B27 positive (I am Negative), this diet helps and not so much for the others. I didn't get farther, but I've been on the NSD for about 8 months and before this time I was near cripple. I also was on a 50mg pred taper for 2.5 months at the beginning of the diet. I have been a proponent of the diet for a little while because I do feel 10 times better than before. COULD IT BE THAT THE PRED KNOCKED A.S. AND U.C. ON ITS BUTT? How have you Negs been treating yourselves? Has the NSD been good for you? (As good as it SUPPOSEDLY has for me?) Any positives have any advice? I do appreciate it and thank you in advance.

P.S. I did offend a category of people a while ago unintentionally so I hope you can deal being called a Neg or a positive. I'm a neg and PROUD of it!


Hey, somebody stole my quote! - Me
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Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
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i'm a neg too, no offense taken.
i haven't seen an effect with diet, but there can be a so many reasons for negative data.
i'd say a lot of this is empirical.....do what seems to work for you.....whether it's "supposed to" or not.

sue

Sue22 #314309 10/10/08 04:38 AM
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Second_Degree_AS_Kicker
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I have not been tested, and I found this website only AFTER I figured out for myself through trial and error that low starch works for me. My friends all thought I was crazy.

I will probably get tested (one of these days), but just out of curiosity. The diet helps me tremendously and I don't need any tests or certification to reassure me of that. When I stray too far into dairy and sugar, I have also have some difficulties. I would have figured most of this out on my own eventually, but the information here and in the book gave me a wonderful short cut and some reassurance that I am not imagining this.


There are only two ways to live your life. One is as though nothing is a miracle. The other is as if everything is. - Albert Einstein
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Addicted_to_AS_Kickin
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Hey Moose...I don't have an answer on that but I think this is a great question! I wonder if any of the long-term NSDers are Negative for HLA-B27, maybe you can PM one of them, if they don't jump in. I hope you find something that works for you...


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Hi

I'm negative too.
I have tried the LSD as opposed to the NSD. I did notice a difference; for the better, and continue to omit many starchy (and other foods). Using a food diary helped a great deal.
I know full well that if I didnt make these changes to my diet, I would be much worse, with more frequent and prolonged flare ups.

Amber UK

Joined: Sep 2001
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AS Czar
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Hey, moosekick:

Quote:

COULD IT BE THAT THE PRED KNOCKED A.S. AND U.C. ON ITS BUTT?




Probably not a long-term effect; steroids cause reduced immune function, potentially allowing for greater colonization by our nemesis bacterium. There are twenty negative side effects caused by steroids, and it seems that you have avoided most of these and I might attribute some of this good fortune to your diet.

Professor Ebringer wrote the foreword to Carol's book (they were introduced after people on this site found her original book and subsequently tested positive for B27 under Ebringer's care). Ebringer had many more B27+ives in his care at the Middlesex AS Clinic, so made some generalizations about diet based upon them and was reluctant to make scientific observations in print, unless he had done actual tests on negatives, but although he 'suspected' the mechanism of AS was identical in positives and negatives, he had never proven it to the satisfaction of his colleagues.

I have corresponded with many B27 negatives over the years and most do have good results from diet and some have used antibiotics with great success, also (again, not something Ebringer promotes). Recently a lady had retested B27 negative using more accurate DNA-level testing. She lectures at Kings College, and found Ebringer there, so met with him and got the collection of technical papers and pointed in Carol's direction. She is B27 negative and responds to NSD (and is quite militant about this fact, and frustrated after years of rheumatologists who had no clue about AS).

Keep up the great results--I know that you will 'experiment,' and hope you will recover rapidly,

John

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Warrior_AS_Kicker
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Warrior_AS_Kicker
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Interesting. So then if the molecular mimicry theory is set to answer the HLA-B27 mystery, then what is the theory that answers B27 negatives? Could it be another gene and another bacteria that mimics it?


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AS Czar
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AS Czar
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Hey, moosekick--

Quote:


Interesting. So then if the molecular mimicry theory is set to answer the HLA-B27 mystery, then what is the theory that answers B27 negatives? Could it be another gene and another bacteria that mimics it?




It is entirely structural; similar structures to a tiny portion of our nemesis bacterium (actually its by-product enzymes like pulullinase and nitrogenase).

HLA B27 is not the whole genetic picture and even "B2705" is not a complete micro portion of our Osp (Outer surface protein). It might not even be strictly sequential, like a hexamer QTDRED, but also structural like the effective electropotenitals surrounding the structure that make QTDRDE susceptible to AS, for example. These hexamer lock-and-keys comprise less than 10% of our exposed Osp, so we are vulnerable to many other "what does not kill us makes us stronger" edge effects.

There is no doubt that you have an Osp that is similar to something the Kp does, but what exactly that is can only be an academic curiosity. I would also like to know the actual structure of the HLA B51 molecule, but have not the time or resources to get that picture; no doubt that you have a susceptible MHC--like HLA B60, B31, etc. You could find out but what time and money would it be worth?

HEALTH,
John

Joined: Oct 2005
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Hey Moose,

I'm negative and remember being dismayed after reading the same passage in Carol Sinclair's book about the NSD being "not so effective" for HLA-B27 negatives. I tried it anyway. That was three years ago, and I'm still strict NSD because I found that it worked and allowed me to largely stop taking NSAIDs. I do take 100mg diclofenac when I get too stiff, but that's maybe once every few weeks, not every day or every other day when I was pre-NSD. I've found that when I have to eat out frequently, such as when I'm traveling or have friends or relatives visiting, I wind up hurting. Please note that I don't cheat when eating out; I think it's just more likely to accidentally ingest some hidden starches when you don't control the ingredients yourself. It then can take a week or so of being strict again to straighten myself out.

In the beginning of my NSD adventure, I wasn't actually sure that I wanted it to work since it is such a restrictive diet. But it did, and I've proven it to myself repeatedly over the last three years, both accidentally and on purpose. I certainly can't say if it will work for anyone else; I only know that it worked for me. And I'm glad that it did because I didn't like the way things were headed before I went NSD.

Jeanette


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