Kickas.org Forums Treatments, Drugs and Alternatives NSD and diet-related; New Member Diet and Doctor Questions

Hello everyone:

My wife -twenty two years old- has just been diagnosed with AS. We have noticed that outbreaks happen when she ate a lot of breads, artificial sweeteners ( especially SPLENDA aka sucralose) and soy milk- unlike tofu, I hear has high amounts of strarch.

Well anyway when we discovered this sight and the information on diet, we felt relieved that in some way we might be able to determine her future, her health, with diet and excercise. This low starch diet seems interesting in combination with other popular low inflamation diets.

Well, anyway we were both gutted we our local rheumatologist said diet has nothing to do with it, the same message we heard from one of the top researchers who we visited in LA.

However, this goes against our own observations.

Can any of you more experienced please share your experiences with doctors, how one finds one with an open-mindedness to diet. We do not nescessarily want an alternative/ holistic appproach but a nice balance and blend. Also, are there opposing camps or "schools of thought" concerning AS and how is that played is out. And are there not many studies showing the benefits of diet.

Thank you.

Welcome!
Sorry to your wife, I too am only just going on 23 and was diagnosed with AS just a few months ago. At my rheumy's first mention of it, I started reading (I want to know exactly what's going on inside me!). I stumbled across diet mentioned all over, but not by any true medical sources. I asked my dr about it and he sort of blew it off (a slight I'll allow.. overall, my dr. is amazing and thorough). He said, "I've done some reading, but I'm just not sure I believe it..." and he trailed off and changed the subject. I stumbled over this site and decided that the medical field has been wrong before.. There are a few thousand on this site and many of them will tell you that NSD works for them. I just started my adventure into it, and I'll tell you, it's verrrrry difficult! Starch is hidden everywhere! And it has proven costly for this unemployed student (thank god for my supportive boyfriend.. and his income..).
This site can answer just about any question you have about starting NSD, and if you can't find it, ask. Someone is bound to know the answer and will let you know! (in fact, several will know the answer and tell you THIER version).
This site is a great resource, and I can never express how much I appreciate these people, complete strangers who reel you in like family!
Here are some links to check out:
web page
web page
A good place for recipes (keeping in mind that SCD is different that NSD, but can work with some tweaking!):
web page
Good luck!
(PS, way to go being such a supportive hubby! I'm sure it means the world to your wife.. This is a difficult disease to treat, understand and live with, and if she anything like me, she'll probably feel guilty about limitations from time to time. (Like my needing my boyfriend to push me around the Minnesota zoo in a wheelchair in the middle of a horrible flare recently! ))

WELCOME, coleridge:

Both You and your wife are young enough to benefit considerably from starch restriction.

There is considerable evidence linking starch with arthritis and AS in particular. Clinical observations go back before the turn of the last century, even, and serious scientific data has mostly come from Ebringer and his over 500 patients in the course of his 20 years running the Middlesex AS Clinic. We have published some of Ebringer's papers on this site, so please check out the "Diet Centre" technical papers.

The guy who could best be credited with successfully treating AS is Giraud Campbell, D.O., for in the early 1970s he was treating people with total starch restriction and finding a reversal of arthritic symptoms. Ebringer was not aware of his work, or that of 19th century Dr. Wm H. Hay who found that starch in combination with protein caused severe problems and he controlled his own Bright's disease by following a food combining technique (Jackie LeTissier has controlled her own AS using the Hay Method), and MANY other clinicians like Drs. Mercola, Seignalet, and Perricone have discovered the starch--inflammation connection. Carol Sinclair discovered the connection with IBS before she was aware of Ebringer's work and before she knew that she was antigen positive. Don't be fooled by the doctors; so many of them have been fooled--including the talented genius who finally diagnosed me; he also boomed "THERE IS NO ARTHRITIS DIET!" He was right about the diagnosis but VERY WRONG about diet. We still need doctors to evaluate the progression of this disease and to TELL THEM which drugs to prescribe and ask for referral to an ophthalmologist at the first sign of eye complications (when backsliding from the diet), but as far as diet information goes, the doctors are almost universally useless. Know that they might want to help, but their poisons (NSAIDs, steroids, immune system killers) can do much more harm than good, long-term.

It is my opinion--and hope in this case--that if AS is caught early enough and NSAIDs are avoided, one can spend a therapeutic amount of time on the NSD, then LSD and then 'experiment' with an almost normal diet, only being strict when told by your body that a flare is on the way. Drugs interfere with this feedback system, so the deal is to be off all drugs to be able to 'listen' to our bodies.

The foods which did me in were those fried--especially deep-fried, breaded stuff. I say that if you do not react to these you are either already in a full flare and the pain needle is pegged--OR you either don't have AS or are treating it with dulling drugs--like clipping the wire to the warning light on your car dashboard; something even worse can eventually go wrong.

Ebringer felt that for the diet to be long-term, it had to be manageable for most people, so he combined his starch-reducing regimen with DMARDs, however, Carol Sinclair managed to avoid all damage over many years by being much more strict than the London AS Diet and never took drugs. Most of us are somewhere in between. I use antibiotics in addition to near-total starch restriction, since I react slightly to dairy and the antibiotics prevent this (but they do not prevent a flare due to fried foods or those made with flour).

Soya milk is very starchy and I would stay away from all nutrient drinks--especially protein shakes and the like. I don't know about the artificial sweeteners; I use Sweet and Low without problems, but cannot eat too much cheese.

Glad to have You as a member, and we appreciate very much your efforts to support your wife; You have come to the right place!

John

Hi and welcome to Kickas, this is a great place to learn of alternatives... this place saved me 4 yrs ago now. You can read the success stories thread to see my story.

I have yet to find a rheumatologist that believes in diet as an effective approach to treating AS. I did have one Primary Care Physician that was supportive. Guess you just have to keep asking and networking if you want to find someone. I do know one rheumy that was in Scottsdale (can not recall name) that was more open, heard him speak at a conference.

Tim

Trust me on this...you'd get a MUCH better response to a potential discussion on diet and health if you talk to a large animal veterinarian, and I say that with respect, not sarcasm.

If I tell a doctor eating certain foods makes me ill, and they blow me off, I don't screw around with them anymore, because they are not scientists nor physicians at that point, but flat-earthers.

"....this goes against our own observations...."
THOSE ARE THE OBSERVATIONS THAT YOU SHOULD BE PAYING ATTENTION TO.
What are people made out of? What they eat. Duh. Dumb****s.

What's the difference between me and a monkey? My genetics. What's the difference between me and a doctor? My genetics. Think about it.

Arthritis-It's an obscure disease, it's not sexy, it's NOT BLEEPING RHEUMATOID for us, it doesn't kill you fast enough to be romanticized in a movie, nobody is going to get rich off of us unless some sort of very expensive pharmaceutical product is invented to fight it... OOPS! I think we found the problem there!

The o-t-c and prescription drugs that you take WILL poison you, and your internal organs WILL be damaged. Let's take a normal person and put them on any of the common arthritis drugs, or better yet a combination, for a few years and see how SICK and depressed they feel (why doesn't any body DO this? Because they know the results would be devastating in blowing the myth that drugs only make you feel better!) Even the new anti-TNF drugs, I suspect, will be found to cause long term damage to certain organs because they are immune system suppressors and already are admitted to increase the risk of lymphoma. AS patients already have a statistical higher probability of developing lymphoma. I hate saying this because these drugs provide real relief to some people for periods of time. The balance is to find the least amount of drugs to take so you don't damage your body any more than necessary to function. I eat in a way that I create the least amount of inflamation for myself.

This is the opposite of how a physician looks at you...you are an organism to treat with drugs, end of discussion...unless you are a heart patient or a type II diabetic, and then you are treated to the "diet" lecture. Lucky them. :

I would just laugh at this point if some "doctor" told me to change my diet because they don't know me and they don't listen and observe. Just because I am rare does not mean I am non-legitimate.

I had this happen when I had an ulcer a few years ago. My family doctor would not listen me about the research in Australia about bacterial causes and put me on Zantac, prescription then, and told me I would probably be on it for the rest of my life. After about a month and as I read more about the australia research I went to a different doctor and she had heard something about it and was willing to experiment. She put me on Pepto Bismal (a topical antibiotic) and a regualr antibiotic. In three months my ucler was gone. About two years later the AMA acknowledged that bacteria may play a role in ulcers and recommended a antibiotic treatment.

I am going to talk to my arthritis doc about the antibiotic treatment for AS in about two months. It will be interesting to see what she says and if she is willing to proceed. I hope she is open about it. I mean it is not like I am asking for a narcotic or something. I will only do Enbrel or the biologics as a last resort. It may come to that but I am in no hurry. Fortunately my AS is fairly mild most of the time. If I was in constant Pain I would probably have a different attitude about the new drugs.

Hi there,

My husband's rhuemy also rubbished the idea of a diet but said try it for a month and then start this sulphasalazine (implying the diet wouldn't do anything).

Well, that was two years ago and Jon has never been back and never had to take the sulphasalazine ever because the diet DID work! He is now on no meds - not even tylenol/paracetamol. This has been the case since 9 months into the diet.

This diet won't do your wife any harm so there's no reason not to give it a go.

Best of luck to you both!
Chelsea

I have not found a doctor yet who won’t patronize me when I mention the diet. It is truly a sad thing that doctors refuse to listen to the direct experience of their own patients, yet put all their belief in studies funded by drug companies.

I have had great success living no starch for the last 4 years. I have my life and health back. I take no pain killers. I am gradually getting all my flexibility back.

Listen to your own experience! Doctors have nothing to offer but pain killers anyway.

I would recommend trying the diet for at least 6 months. You have everything to gain and nothing to loose.

Hi,

Just wanted to share what I learned over the weekend about sweetners. I iodine tested Splenda (yellow pack), Sweet'N Low (pink), and the blue pack, which I don't remember the name of.

The yellow and blue packs both turned black very fast. The yellow Splenda pack contains maltrodextrin, which is what I believe turned it black, because straight sugar doesn't turn black.

The winner then was the pink Sweet'N Low, which contains saccharin, dextrose, cream of tartar and calcium silicate. It didn't seem to change at all. Is this consistent with other people's experience?

Adam

Thank you all.

Like many, we are ingrained with ideas/ propogandized with this blind faith
in official versions of things. You guys have helped me remember that for many doctors science equals drug company's latest products. Does anyone remember the FDA approving and recalling Vioxx just as the most recent and egrecious example.

And yes, thnaks for reminding me that we all should be our first line of defense and really practice self reliance above all.

By the way, can anyone give me information on Glucosamine and Acidophylius?

Thanks again.