Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group and the results are negative

Hi James - it sounds like we are almost exactly the same diet/food intake except that I try to restrict almost all starch meaning breads/pastas/rices etc. I read somewhere (sorry I don't remember where I saw it on the net) that you could decrease your starch intake by only 40% and see significant benefits.

Growing up we had the home cooked meals also but it always cornered around meat/potato/vegetable. I never had a lack of commercial snacks and healthful eating was never reinforced at our house. Perhaps you and I are doing alot of the same but calling it by a different name. The only condiments I've been using really is mustard and mayonaise as these are basically simple basic ingredients. I am thinking of making my own yogurt as I have found I enjoy that very much and sometimes find starch hidden in the commercial ingredients. I find with the unprocessed foods I can eat anything without gastro/intestinal issues. I did have one issue that prune juice soon resolved . I eat tons of almonds and brazil nuts as I enjoy the crunch and loads of fruit and yogurt. I think it all pretty much balances itself out. I'm also thinking about juicing for the nutrient value.

I also am on no medications other than the occaisional 800 mg of ibuprophen when I get the occasional back spasms. I have seen many of my AS afflicted family members go the route of high tech drugs and therapy and there was always a price to pay health wise. I want to only use as a last resort.

I really am not kidding that I wish I would have found out about my disease sooner...I would have been much healthier growing up. Oh well better to make the changes now than not at all. Take care and a pleasure talking simularities...Sue!

Hi again Sue.
"Perhaps you and I are doing alot of the same but calling it by a different name." Perhaps that is true lol. Wow, only a 40% reduction in starch can make a difference? Hmm, maybe I had already maxed out my anti-starch results because my result's from LSD/NSD alone were only 50% of what I was trying to achieve. Then later when I started trying a few different nutrient rich alternatives, that's where I noticed the second big difference in pain reduction. This is when I felt that there are other good ways to help combat this disease naturally. I have trouble digesting certain unprocessed food as well as certain over processed food, but I am supposed to be getting that issue checked out next month. My only two condiments are mustard and A1 Steak Sauce (which I am now trying find a healthier recipe for). I wish kickas.org was available back in 1981... but at least we're on the right track now.
take care Sue,
James.

Oh my god, I just new it. So, you are still in limbo. Someday you can write a book about this! Keep searching for what works, what helps you. Every body is so, so different. It seems as though there is more that doctors don't know about the immune system than they do. Have you been trying the NSD eating plan? I was sliding into half heartedly following it during a move to a new state, and boom--flare up of of symptoms. I was strict with NSD and then with all the stress and work of setting up a new home, I slid into eating some starchy foods again--wham: flare up.
Hope you feel better soon,
Jan

Thanks for all your responses everyone.

I'm on my way to see a naturopath this morning to see if he can help me on my way to healing. I plan to talk to him about diet and any possible supplements I should be taking.

I also bought a pass to the rec centre this week where i have access to a swimming pool, sauna and exercise equipment. I went swimming in a pool yesterday for the first time since I was a young boy. It was a bit odd. I hurt afterwards. But that sauna was great.

To those of you who are HLA negative out there. Can you tell me a bit about your experiences? Is the illness much different for HLA negatives? Does the NSD work? And etc.

Thanks,

Colin

..."serious and worried fellow"? That doesn't sound so good. Kind of has an "it's all in his head" sort of ring to it?

I sent my lawyer some info I had recently and in there were some studies that said 5% to 10% of all AS sufferers do not have the HLA B-27 gene (forgive me if I got the little buggers name wrong) and that evidence may not show up on X-Rays because it can take between 7 to 10 years for damage to show up that way. MRIs were considered to be a much more reliable method, so if that is an option for you and you haven't already gone that route, it might be worth looking into?

btw, all doctors were not created equal. Never hesitate to get a second opinion, especially if your current doctor gets pissy! When I had to explain to my rheumy the "facts of AS" he tried to make me feel like I was on crack. He ate his words and put the fact that I was right all along in writing. I am going to see a new rheumy in a couple of weeks.

You don't have to lay down and take it in the...

You're in charge, you're the man, your doctors work for you.

Colin,

I am also HLA negative though I match enough other criteria to have a dx of AS (SI sclerosis, SED rate and whatever else they look for).

As a matter of fact, the test has been done on me REPEATEDLY, and comes back neg each time.

I do know how frustrating it can be to not have a dx. For like 5 mins, 1 rheum took back the AS and dx'd polyarthritis on some form instead?! I was baffled. Then she decided it was AS again...

I just hope you are taking good care of yourself, you are hurting, and whether or not they have a name for what you have, I hope they are treating you as best they can.

By the way, I am on anti-TNF. When your immune system is misfiring and actually hurting you, guess there's not much better out there right now. But they are getting closer to new treatments and a possible cure (to "reset" immune system) everyday.

Be well, Jessica

Hey there,
I have to see if I can find it, but I know at some point I found an article when about a year ago, anothe gene suspected to play a role in AS was identified.

As much as docs and the whole human genome project scientists would like us to think they have these things figured out, they only see the tip of the iceburg sticking out from the water. There is also something called epigenetics, which is something they're still discovering on everyday. It is the science of how genes are actually turned on an off during the course of life...The genome is relatively uncomplicated, compared to the combinations that can switch on and off ---
I'll include a link to PBS NOVA documentary on this on youtube.

There is still much to be learned. Happy Hunting.

http://www.youtube.com/watch?v=8j949RyNXqc

http://www.youtube.com/watch?v=NCNXMl4j-88

http://www.youtube.com/watch?v=Vw5Faihs_v8

http://www.youtube.com/watch?v=_6VddGxb3hE

http://www.youtube.com/watch?v=4Lqs-2b1PXQ

Spondylitis Association of America Participates in Study That Uncovers Two Genes Related to Disabling Form of Arthritis
SHERMAN OAKS – (October 21, 2007)

A collaborative effort by an international team of researchers in the U.K., Australia and the U.S has led to the discovery of two genes that cause ankylosing spondylitis, a potentially disabling inflammatory disease.

The findings are published in the November edition of Nature Genetics, a journal that emphasizes research on the genetic basis for common and complex diseases.

John D. Reveille, M.D., professor and director of the Division of Rheumatology and Clinical Immunogenetics at the University of Texas Medical School at Houston, in conjunction with Matthew A. Brown, M.D., Professor of Immunogenetics at the University of Queensland, led research done by the Triple “A” Spondylitis Consortium Genetic Study (i.e. the TASC or Australo-Anglo-American Spondylitis Consortium). The international team of researchers worked with investigators from the British Wellcome Trust Case Control Consortium, and together they made the genetic discovery.

The Spondylitis Association of America (SAA) oversaw the nationwide recruitment of patients and families for the study.
“This is the most significant breakthrough in AS research since HLA-B27 was uncovered 34 years ago and SAA played a significant role in making the study possible,” said SAA Associate Executive Director Laurie Savage, who is Co-Principal Investigator for TASC’s administrative core.

Reveille said the discovery of genes ARTS1 and IL23R brings the scientific community two steps closer to fully understanding ankylosing spondylitis or AS, a form of arthritis that attacks the spine and can also target other joints and organs in the body.



The recent discovery is based on work from the largest and most comprehensive genome-wide association scan conducted to date. In this part of the research project, investigators were searching for genetic information related AS, as well as autoimmune thyroid disease/Graves’ Disease, breast cancer and multiple sclerosis. Reveille said the most significant findings were in AS, a chronic disease that generally strikes patients in their teens, 20s or 30s.

“ARTS1 and IL23R show a new pathway of causation,” Reveille said, “and this could lead to new therapies for the arthritic condition, which can cause a complete fusion of the spine, leaving patients unable to straighten and bend.” This new pathway is likely to lead to clinical trials within the next couple of years to develop a new class of treatments for AS.
The identification of the two new genes also could help physicians identify patients who are at the highest risk for developing AS.

“For example, if you have a family member with AS, a simple blood test would be able to tell us if you are also at risk,” said Reveille. “We could offer screenings for people with back pain. In the past, the HLA-B27 test was all we had. Now we potentially have more tests.”

“This is a success story for genetics work, and I think it will lead the way for other work to be done,” Reveille said.

About Ankylosing Spondylitis
Spondylitis is the term used to refer to a group of chronic, inflammatory diseases that generally strike young people between the ages of 17 and 35. Typically, spondylitis causes pain and stiffness and, in the most severe cases, can result in a total fusion of the spine and/or neck, leading to disability. Although spondylitis primarily affects the spine, it is not uncommon for the disease to impact the joints of the shoulders, hips, knees and feet, as well as cause inflammation of the eye. More rarely, because AS is a systemic (whole body) condition, other organs such as the heart and lungs can also become involved.

About the Spondylitis Association of America
The Spondylitis Association of America’s mission is: To be a leader in the quest to cure ankylosing spondylitis and related diseases, and to empower those affected to live life to the fullest.
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