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Joined: Mar 2006
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I am recently diagnosed. I found that my consultant did not give me much information at all. I have been referred to see a physio, but she did not mention diet.

Are your experiences similar or do your Rheumy's promote/mention/suggest you try the diet?

I have only been on the diet for 3 days now, don't know if I am imagining it, but I feel as though I have improved. I have read a number of success stories, and the Prof Enbringer reports, which seem really positive.

However, I read a book recently re AS, which was written by a Professor with AS. He claimed that there was no specific diet.

Any thoughts, as I am confused?

Also, if the diet does work, why isn't everyone on it!!??


Michelle

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Oh Michelle - that book written by a professor with AS - M Khan? - who is careful with his words. He certainly knows about the NSD, knows Ebringer's work, but is one of those who says 'prove it, prove it' but would never promote the controlled clinical trial Ebringer has sought that would 'prove it'. No, Khan has never promoted the diet; only over his dead body I guess will there ever be a diet! You may be on the way to proving the diet works for you but while the likes of Khan hold sway knowledge of it will remain limited.


'Then you should say what you mean,' the March Hare went on. 'I do,' Alice hastily replied; 'at least - at least I mean what I say - that's the same thing , you know.' 'Not the same thing a bit!' said the Hatter.
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Hi Michelle (and welcome to KA and the NSD),

Here in the US, most "traditional" doctors seem to look at medication as the front line for any disease or problem. My rheumatologist was fine about me TRYING a diet, acupuncture, etc. -- but was and is obviously skeptical about diet doing any good. It's frustrating.

The book you read? Ankylosing Spondylitis: The Facts. I read it too right after diagnosis. Another book that I found more helpful (although there's little specific info on AS in it) is Living Well with Autoimmune Disease: What Your Doctor Doesn't Tell You . . . That You Need to Know by Mary J. Shomon. She explores a variety of treatment options for the autoimmune diseases -- everything from medications to diet to alternative medicine.

Another book I read (and probably should re-read to scare the begeebies out of myself again and get myself back to the straight and narrow!!!!) is Jack Challem's The Inflammation Syndrome: The Complete Nutritional Program To Prevent and Reverse Heart Disease, Arthritis, Diabetes, Allergies, Asthma

There are other interesting books not so much about AS but about diet and autoimmune diseases that essentially corroborate the NSD: The Paleo Diet and Going Against the Grain are two that I'm remembering.

Essentially, in regard to the diet, I feel pretty much on my own. It would feel so much easier to have a doctor who says "you really need to do this." I have a harder time making a stink about diet when I go places (like to a conference for example) when it's a diet that I impose on myself versus a diet imposed on me by a medical professional -- especially when my medical professional doesn't even believe in it.

Why isn't everyone on it? Even though I KNOW it makes me feel better -- it takes enormous will power to stick with it. Our entire culture is obsessed with grain products -- they're everywhere and in everything.

I have to cook for a family -- and then I have to think ahead and cook additional things for myself -- also not easy -- partly because of time.

We're on a tight budget. It's one thing to buy an expensive salmon fillet and think it will be four or five meals -- but then with two teens in the house, it's only two meals -- if we're lucky!!!! (my 16 year old could probably polish off about 2/3 of the fillet by himself in one sitting). So -- I eat the salmon fillet which everyone likes -- but give them a rice casserole?????!!!

I have vegetarian sympathies because of world resource and poverty issues. I struggle on many levels -- and I think my struggles are part of why a lot of people don't try or go with the NSD. But I will tell you, that for people who give it an honest to goodness go -- it helps!! I struggle with sticking with it, but I totally believe in it.

Didn't mean to write a book. I'm gabby tonight. Haven't been on much, lately!

Best wishes. Paula


Meanwhile I live and move and I am glad, enjoy this life and all its interweaving. Each given day, as I take up the thread, let love suggest my mode,my mood of living. (Fred Kaan, 1975)
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Not everyone is on it beacuse it is hard. It takes a lot of will power. I think almost everyone here cheats once in a while; sometimes they can get away with it, and other times it kicks them in the (I) . Other people say it doesn't work, but it may be because they gave up too soon or were still consuming starch and didn't know it.

I have had several doctors here in Korea, and they have all been supportive of me doing the diet; also, they encouraged me to get off the meds. They said they we basically have an allergy to starch.


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Hi Michelle,

As background, I'm still waiting to see a rheumatologist, but my integrative medicine MD has confirmed that I'm HLA-B27 positive and referred me to the rheumy. So I'm diagnosing myself with AS at this point to be completely honest (my dad has AS and I have some classic symptoms). I'm also treating myself. I started myself on the NSD a week before seeing the integrative medicine MD for the first time in February. She was impressed that I had started and have stuck to such a strict diet. By way of further background, I mean integrative medicine MD as an MD who practices in a Center for Integrative Medicine where she works in conjunction with naturopaths. Anyway...when I discussed this diet with her, she was completely open to me trying to treat this with diet. However, she had never heard of the NSD nor of professor Ebringer's research. She only approved of it because she saw it as a general anti-inflammatory diet (because of avoidance of highly refined grains) such as what would be used to treat other forms of arthritis. I didn't get the sense that it clicked with her that it was the complete avoidance of starch that relieved my pain. Then, she sent me to a naturopath in the same clinic who analyzed my diet and supplements. The naturopath also had never heard of NSD, Prof. Ebringer, nor of testing food with iodine. They were both perplexed about testing food with iodine. They both support my diet, but I don't think they are at all up to date on this starch/klebsiella/molecular mimicry theory that was introduced over 20 years ago!!

Anyway, my point is that even a doctor in the US who is supportive of treating diseases with diet but who has never heard of Prof. Ebringer's research might not make the connection that it's the starch that's the problem. I really don't think they believe me! I get the sense that once you tell doctors here "I read it on the internet," they unwittingly cop a stance and tell themselves 'I'm sure they did read it on the internet...but there are a lot of untrusted sources on the internet.'

Even after seeing each of those doctors who are supportive of therapeutic dietary changes overall, I still have to say that I get more information on kickas and from my own experimentations with what I consume than from the doctors. I'm really interested to see what this rheumy has to say. Maybe it will be joyous and he'll be familiar with NSD!! We'll see.

Just keep in mind that since we have a relatively rare disorder, a lot of doctors are a bit uninformed in addition to the lack of what is considered 'reliable' research that a US doctor will rely on. (if you are in the US?)

good luck! I feel so much better being on the diet, I hope you do too.
Ginger

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I wish I could go back to the osteopath I had years ago pre-diet, because I know he'd at least not think it ridiculous because he's seen me really, really bad. And he also dosed me up with a lot of antibiotics when I needed them, and it was obvious I always felt better on them. Maybe he was being intuitive.

The diet is hard. Your food preferences are thought to be aquired before you are born by being influenced to want what your mother was eating, a sort of biological priming for real life. And oh, my, what some of us ate when we were little is NOTHING at all like what we are eating now. Cereal for breakfast, sandwich for lunch, fried breaded starch thing for dinner, cake or cookies for dessert, yikes!!!! GRAIN GRAIN GRAIN moo moo moo!

What is the very first baby food they give you? CEREAL! aaaaaiiiieeeee!!!!!! and COW'S MILK! aaaaiieeeee! Second food item....BABY BISCUITS ! MELBA TOAST! Third item...finally we get to the applesauce. But then...mashed spaghetti-o's! Mashed potatoes! Doom!
It's a miracle I can choke down a lettuce leaf. It is not my natural inclination.

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Hello Michelle: I'm glad you brought this up. I was diagnosed with AS 7 years ago and found the NSD/LSD on Dr. Google. Since then, with the diet and support from people like Dragonslayer and a couple of ibuprofen a day, I am doing well.

Members here seem to have a low opinion of rheumies and this put me off consulting one. My wife has Sjogren's Syndrome and she loves her doctor, so she nagged me into signing up.

When I mentioned to him that I am on the diet and what a life saver it is, he gave me this LOOK and said "it is controversial". What is it with the medical profession and this simple and empirically proven diet? I read Ebringers papers and the biology seems simple and undeniable to me.

None of the board members of the Spondylitis Association believe in it.

Anyway, the doc has put me through the complete battery of tests (on going) and wants to put me on Humira. My sacroiliac joints are fused but other than that I have no evidence of fusing and pretty good motion, so he is sceptical of the symptomatic benefit. Even with the diet I still get more tired than I should, so I am looking forward to some relief.

I'll keep you all posted.

Best regards,

Mike

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Hi Michelle, and welcome to KickAs.

My rheumy wouldn't even let me finish my sentence in regards to the NSD! before I finished she says: "There has been no studies regarding diet. Diet doesn't work." Just like that, so rude, I thought. And yes, there has been studies, Dr. Ebringer for one.

My GP however, when I told him about the NSD and that it was working for me, didn't discourage me. His attitude seemed to be if it is working then continue, if it doesn't work or complicates things don't do it. I really like my GP he is very thorough and caring. He treats my whole family. He is like the old-fashioned family doc!

My take on Docs and the NSD: most docs have not been trained in nutrition or diet, but rather they have been trained in medicine and drugs! Some docs are open-minded enough to allow they may not know everything, some docs are very close-minded and would have you assume that they know everything about everything!

Personally, I do not put all my faith into the docs, I trust some and don't trust others. I go to who I trust.

You will have to find out for yourself what is right for you, Michelle, and if you research all the back posts on this site and on other sites, you will find yourself armed with useful information that will help you make your own decisions!! Make sure you research so you can have the knowledge about AS, because the use of knowledge is power!

Good luck! and again, welcome to KickAS!

Rita

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Michelle,
This is indeed a sore spot for me. I was stiff and in pain for 9 years and all I got from rhumies were pills.

5 years on the diet and I'm completely pain free. I've tried to tell doctors this it is the result of a diet and all I get are patronising smiles. They never even ask me what the diet is!

For me they have been worse than useless.

Follow your own experiences.

Best of luck,

Paul

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My rheumy promotes medications.

I have taken it on myself to seek NSD, physical therapy, therapeutic massage, aquatic exercise...............while the medications worked before I knew about all these other more helpful things, I am so glad not to be dependent on them any more.

The thought of the diet is more then most people can handle. No pizza, burritos, sandwiches, etc. Why live? But once you experince the freedom from pain, you can gladly live without the starches.

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