its my opinion - diet literate AS suffers that arent prepared to adjust their diet to cater for their pain levels associated with Ankylosing Spondylitis are SOFT IN THE HEAD. Prefering to spend their days complaining about how much avoidable pain they are experiencing rather than spending their days preparing the correct food to decrease the pain levels associated with reactive arthritis.
Ask your self... would you feed a diabetic sugar cubes? would you give a peanut butter sandwich to someone with a peanut allergy? Would you take diet advice from someone that cant even look after their own dietary needs?

So if your offended by this - GOOD, its your wake up call to get angry enough and harden the F*&^% up. Your decision to continue with the STARCH eating is harming you weather you want to believe it or not.

I suppose that makes me soft in the head then and yet I seldom complain of pain because my disease has been well controlled with Remicade for 5 straight lovely years and counting. My CRP currently sits at a whopping 2.

Good try but I'm afraid that I'm not offended. I am delighted that you are experiencing such success with the diet Darryn. I wish you were able to be as happy for me but we are all a little different I guess.

Welcome back.
mig

i am very happy for you mig, if you have your AS under control without diet control you are winning the battle. if i could afford , id use the latest in drug technology also, but im a mere spinach eating peasant. Anyway Mig, i dont see you persistantly posting how rotten life makes you feel without doing a single thing about it.

Darryn - heigh man, great ter see ya, ter see ya great! Fraid I only so-so follow the LSD. Break out of it every so often. But know IF I am in pain then *entirely* MY OWN flippin FAULT.

Can't go along with ALL aspects of the London Diet 100%. There are many items on the London Diet that would throw me into nasty wobblies, especially with the gut reactions. NOT going there, not for anyone! But, plain ole starches, OK, go along with cutting those down - which is what I sort of do. And, NO fried foods (loath fried foods anyways, can't stomach fried. Add in fats to that as well. Shudder. Mega YUCK.)

Take care man.

Molly C (France)

hey there friend!! thats the point im trying to make, if you eat starch and end up in pain....its your own fault. I ate a massive garlic bread pizza base last week - just to feel the pain. it worked, i ate massive amount of starch - i created a massive amount of pain. . im drug free NSD

I don't think any of us are soft in the head...what does that mean exactly? stupid? nieve? or just that we don't agree or follow what works for you?

What you need to remember is each persons circumstance is different.

I know several people here who have tried the diet faithfully but it didn't give them enough relief, ME being one of those and had to go to Remicade. I feel like I tried the diet to the best of my ability and I am not going to have someone rake me over because what worked for one didn't work for another.

I don't think it is ever a good idea to use such generalization, that just doesn't even make sense EACH person is different. You and I could both have the same kind of cancer but might have to have two entirely different treatment regimens.

I can't imagine ANYONE here wanting the pain and strife that comes from AS. If someone is griping is that not what we are here? a SUPPORT group???

I am glad that you are maintaining relief thru your diet and apparently willing to fall off the wagon for your selfish desires of garlic bread but don't gripe at us when it doesn't work for everyone.

You know there is that old saying...when you can't say something nice!

Lisa

Most folks misuse the term ironic. They describe things that are paradoxical, satirical, sarcastic or sardonic as being ironic

Clearly, however, you were going for irony here.

I have no problem with irony or tough love. Both work well when the intent is munificent and the heart is hopeful.

Hey Darryn,

have you ever tried antibiotics to complement the diet in taking down those Kleb levels?

Not everyone is wired the same so one cannot say that diet will work universally. Same with medicines and exercise etc.
What you are saying is that the diet is a cure but that would not be a factual statement. There are no cures.

when ever i can get my hands on em! i just took a heap ..better than ozone sterilized spinach

doesnt your bum get sore sitting on that horse all day

Darryn,

As others have pointed out, your belief that the no-starch route is a cure for AS is misguided. It is not. Therefore, a blanket statement where you call everyone who is not following the diet "soft in the head" is neither fair nor particularly useful. Folks here have enough going wrong in their life--I don't think that coming here to be insulted because they choose not to follow a particular diet is something we need to throw on top of them. As mig said, there are perhaps better ways to address this topic in the future--for example, the old saying, "you catch more flies with honey than vinegar" comes to mind.

Brad

Sooooo, all the NSD people who complain about being in a flare, are they soft in the head too for lying to themselves about the "positive" effects of the NSD? How about the "soft-headedness" of NSD people depriving themselves of foods they love while still suffering from the aches and pains of AS?

Look, I'm all for living and letting live, and I'm so glad for those who find some level of relief from the diet, but this ridiculous evangelical crusade to force the NSD on those who simply don't agree with the science or the anecdotal evidence is quickly making this a site I don't want to visit, which is sad, as I enjoy most of the people here.

As for the original poster, I had to quietly roll my eyes as others pleaded with you to come back; frankly, I have little patience with those who do anything for attention. Yes, you got the attention you wanted, and as a thank-you, you stir the pot yet again. I'm not offended, but I am mad that you've managed to ruin one of the minor highlights of my otherwise tiring day. If you've any manner of how to be polite, you'll dial it back a bit, try to play nicely with others, and treat the site with a bit of respect.

Hey, Darryn:

Glad to see You have not left us, and especially that the NSD works so well for You!

We have tried hard to alienate this bunch before, but they keep hangin' on! This approach doesn't work when our fellow ASKickers are so tough they can endure AS and words just off like water from a duck's back. But thanks for tryin'; everyone here is certainly worth the effort.

Some think the hour glass has run out, others want to find a drug/some have mild enough symptoms to treat with drugs and decided not to do too much starch restriction--it is all a personal choice. I try and hit the newbies once and if they show interest direct them to the NSD Forum but otherwise there is plenty of other stuff to share here.

We used to have "starch-wars" that I was at the center of mostly but as people began trying the NSD they found their voices--so much so that I was once compelled to ask Professor Ebringer why going starch-free changes our personalities so much! I would say that KickAS has actually banned very few people, but it is usually done only after great angst of the moderators and egregious errors on the part of those banned, but oddly I would suspect the overall majority of those banned were NSDers!

We have some frustration, doing NSD, since it is so inconvenient and so much of our food is adulterated with starches. And there are few products that are starch-free but satisfying the way starchy things are; is is overall a tough-as-nails regimen. It turns a (capital "L") "Liberal" into a conservative: The lessons of personal responsibility and observation about the world (it just ain't fair!) make us appreciate the truth ("TRVTH;" written in stone) instead of empty campaign promises.

And while I am certain that the cause of AS is the same for everyone, I do know several people who have diligently followed NSD and not had results. One had to get chelated before the NSD began working. I have had chelation and years ago the amalgam removed from my teeth but I never thought these things had any influence on why NSD worked for me. And I can understand why (as an EX-vegetarian) people would want the NSD to not work for them. But in a Liberal world, everyone needs an "out," so we know that NSD does not work for everyone (5%), and 25% of the people want to be in this group; just the way things are. Some turn their backs on it to the extent of not even doing LSD in combination with other conventional therapies, which is what Ebringer suggests in the first place.

It is our goal that everyone with AS become informed about the NSD and make their own choices, day-by-day. We don't want to shame or bully anyone or even make them feel unwelcome here--because no matter what they do about their own treatment they are always welcome and can always contribute something and we appreciate every person here, whether actively posting or just learning if lurking.

I'm glad that You have chosen to remain a part of the group, but would appreciate some less provocative tone; we've been through it all before and I don't want to have to constantly be on the lookout for threads to move into other forums!

HEALTH,
John

Pete,

I think I know exactly how you feel regarding this latest tempest in a teapot that Darryn's post has touched off, as you are right in mentioning that it's something we've been through before here at KA. All I can say to hopefully make you feel a bit better about things--and to keep Darryn's post from ruining your day even a little--is that you've been here long enough to know that, thank goodness, the occasional squabbles regarding diet vs. other treatments have largely died down and are not nearly as common--nor as long and loud--as they used to be. The longer KA is around, the greater the spirit of understanding and cooperation among members becomes, and I firmly believe that will continue to be true as we move forward. I think that you can safely treat this thread as an aberration, unlike back in the day when this discussion might have been a monthly occurrence.

Hope that helps at least a little.

Brad

Good lord, John--I know it wasn't your intention, but you just made it 100 percent certain that I'll never try the NSD!!!! That is one side-effect that I could never, ever live with.


Brad

Darryn, this is a support group. We should be encouraging and helping members to cope with AS...not tearing them down for their treatment options. Treating AS is a personal decision...and one size does not fit all.

Some people take the drug route and do very very well...esp on the biologics. Others try that route and it doesn't work out so well for them and they struggle with ongoing problems. The same applies with the NSD. Some try and do well, others give it a short half-hearted try and give up and still others give it a genuine try for a decent amount of time and still find it doesn't work for them.

I appreciate your enthusiasm for the diet and am so glad it is working for you as it is for my husband. For us it's been amazing. And I can certainly understand your desire to share your positive experience with others in the hope that they might try it and also find relief.

However, telling people to "harden the F*&^% up" is completely inappropriate and not constructive. The sad fact is that despite your good intentions you are more likely to turn people away from looking into the diet by making statments like that, rather than actually helping them.

ok, im sorry about the inappropriate comment - it was a very bad inconstructive comment. I am feeling very frustrated that people are denying themselves better health. eating the right foods can even remit some cancers so i dont see why people cant accept the right foods can remit AS...i guess their the ones missing out the pain reduced life style. i know i shouldnt even care, but i do and im acting out of total frustration at the lack of self love of some people. sometimes you need to be cruel to be kind and i have no problem being the person everyone loves to hate. it had to be said and i said it - no regrets besides the HTFU comment.

lol...I am with you on that one Brad..lol

im not seeking any attention - what pot am i stiring? get mad at my posts...must have touched a nerve, you need to get in control of your emotions if reading someones post on the internet is triggering your anger, after all the anger is yours, you own it so you need to deal with it.
NSD soft? well i can say not as soft as pizza eaters

...
I am new but I will say that for the last 15 months I have been on a great 'diet'. But in the last 8 months my back has gotten worse and worse!! (I was just diagnosed about 3-4 days ago, finally)
Breakfast:
1oz oat meal
6oz berries
8oz yogurt
LUNCH:
6oz cooked veggie
6oz salad/1tbsp dressing
4oz protein
1 piece of fruit
DINNER:
6oz cooked veggie
6oz salad/1tbsp dressing
4oz protein
3oz rice

Nothing in between, this is it.
Now, this is pretty close to what the 'diet' suggests and I still have great pain!! I am glad that I got my diet under control prior to being diagnosed.
Hope we can all find something that works great for us!!

Darryn,

You have been asked by several admins and moderators to please use a less provocative tone. You may have noticed that several people have been offended by both the title and the content of your original post in this thread. KickAS is a site dedicated to supporting people who suffer from a debilitating disease. Many are living in significant pain and do not deserve to be subjected to your scathing attacks. People are not asking you to be "cruel to be kind" so it's quite inappropriate for you to decide to try to use this tactic.

I know that members who do not follow the NSD are nevertheless delighted to hear of success stories from those who do just as we are delighted when we learn that a medication such as Remicade is successful. This does not justify anyone trying to coerce others into following whatever treatment happens to be working for them.

You have expressed considerable anger in a number of other threads, including the one in which you decided to leave KickAS. Would you be comfortable if another member suggested that "you need to get in control of your emotions if reading someone's post on the internet is triggering your anger"? Please consider, before posting, the impact your words may have on other members. One way to do this is to consider how you would feel if these words were directed to you.

KickAS is a wonderful site. It is rare to find a forum where the tone is so consistently positive and kind. It would be disappointing if this standard were to be lowered on a regular basis and people no longer felt welcome and supported. Please consider how you can contribute to the positive content of KickAS.

angry, lol give me a break please. perplexed yes, frustrated yes...but angry now thats laughable..im afraid your assumptions are totally incorrect with this one wendyR. (edit)

Wendy you are square on when you say KickAS is a wonderful site.

I also believe that this "little issue" too shall pass..lol

You totally summed it up when you said this site is dedicated to supporting people with a dibilitating disease and that is what I love about this place is that you can come and basically lay yourself at KickAS's feet and you will be swallowed up in love and support! We hear all the time that this site is like no others and that is why I think KickAS is number one.

Hugs,

Lisa

Cripes, I wouldn't give a 'Peanut Butter' sandwich to anyone....blurghhhh.......

mmmm peanut-butter and bacon sandwiches

Ok this one is for you James and Alan..lol

My husband thinks he is Elvis..he loves grilled peanut butter and banana sandwiches, and they are actually good.

Hi Darryn

You've obviouly been reading too much "how to win friends and influence people" while you've been away! lol

Forget the diet for a minute - imagine we were talking about something else like religion or politics. You cannot tell people what to think or what to do! People have freewill - it's one thing that makes us human. We are not all the same and do not think the same - that's what makes this world interesting and diverse!

Although I believe NSD to work for me - I do not think it is a complete answer. I think exercise is an essential component too and I also think that physical trauma has triggered my AS in at least one instance.

You have the freedom of speech - but I think it's more construcive to use it in an encouraging, informative way.

This is a site where people share the same disease as you. It's not kind and supportive to shout at people and bang their heads against the wall for them! Alienating people is counterproductive.

You are giving the NSD bad publicity by demonstrating that it has turned you into a raving lunatic!!!! lol

I hope you can see that I'm jesting a bit here not having a go at you.

Darryn, it is NEVER kind to be cruel and you should regret this entire thread.

If a newbie joined KA today and read this thread do you actually think they would be inspired by what you have said to try the NSD? NO WAY! I'm afraid your good intentions are hugely misguided. What you said and the way you said it would have instantly got their back up and put them in defence mode. It's unlikely they would even consider trying the diet now. You are doing more harm than good.

If instead they were greated with positive success stories and a suggestion to perhaps try the diet as an option at some stage and see if it worked for them then they might just consider it. And who knows, if it did work for them they could be on their way to pain-free days ahead.

As an advocate of the NSD and the spouse of someone doing fantastically on it and also as a moderator here, I beg of you...please stop these kinds of posts. You are truly helping NOONE if you continue in this manner.

Hi Darryn,

I do not have AS but my husband does. My husband gave his best shot at 6months of the NSD/sugar/dairy etc with no definitive improvement- so he has given it a rest for a while. Anyway I sometimes find myself telling him off if he eats some rubbish and making him feel guilty for having it. Meanwhile I still have my treats and spoil myself. I know I'm 100% wrong to do that because I am not in his position and do not feel what he feels. He has lost so much to AS and why shouldnt he be allowed to enjoy some starchy food- it's his life and his pain. I know you are excited about the NSD and want to help others but you will honestly put them off instead. Remember you don't know what others are dealing with, not just AS but family circumstances etc. You also don't know their pain- we are all different. Some have so much to deal with and just to get though the hour is tough and they don't need to be told off.

I hope there will come a point when my husband is ready to try the NSD again and this time without any NSAIDS but to get him to that point he needs to be motivated by reading success stories etc, not by telling him he's stupid. Or maybe NSD may not be the thing for him but I respect him for his courage in the constant battle with AS.

For example, I know myself if someone tells me I'm fat then I will just eat more chocolate but if someone makes me feel good about myself and uplifts me then I will be motivated to get in shape.


Kind regards,

Emily

Darryn, enough is enough.

While I appreciate the apology that went with this comment, I'm afraid you are still missing the point, Darryn. First of all, I'm sorry, but no, you do NOT have to be "cruel to be kind." That's just a catchy song lyric, not a principle we espouse here at KA. More importantly, what you said did NOT "have to be said" because what you said was not the least bit helpful. The people here are adults who make their own choices for their own reasons, and as several people have said to you--including perhaps the sites most ardent supporter of the NSD--the diet does NOT work for everyone. Even if it did, it is obvious that you are still missing the point that people here do not need to be chastised or belittled into making what another person thinks is the right choice for them. The best thing you can do is let this topic die--you have made your point, so as an administrator of this site, I am asking that you please do not add any more fuel to the fire. If you cannot answer other members in a civil tone, then it is best that you simply leave this thread alone and move on to other matters. For the last time, it is not your role to instruct others on how to live their lives, nor does this site need anyone to fill such a role.

If you have any questions about this post, or any questions about why your posts in this thread have caused such a furor, please address them in a PM to myself or one of the other administrators (our names appear in red). Thank you.

Brad

And to others reading this post, my advice to Darryn is actually the best advice for everyone. All necessary points have been made in this thread, and it is best if we all move on to other topics. Continuing to fan the flames at this point would almost certainly serve no constructive purpose. As always, we would prefer to see a thread die a natural death as opposed to the admins having to actually close the thread, so I'm hoping that is what will happen here.

Thank you all in advance for your cooperation, and as always, keep kicking AS.

Brad

Brad--

I hear Ya! LOL

I'm a pariah with my Berkeley friends now; they claim that I '...must have lost too many brain cells during that 20 hour surgery.' Somehow, I think they are right.

But You would not need to change Your party affiliation, just become a cereal killer!

HEALTH,
John

Thanks for sharing. Whether you choose to believe it or not, there are several billion people on this planet who may not always agree with you.

Besides, I'm fine with being "soft in the head".

Hope you feel better tomorrow,

Chris

HA HA HA Sorry Im with you Chris I might be soft in the head but I at least respect my KA friends and there wishes on choice.

Kevin

Hi, cryssfriend:

I don't know what "diet" you are comparing, but neither the LSD nor the NSD allows all the foods You have listed. NSD is much stricter, and we have to test even fruits sometimes.

I hope that You will take the time to learn about NSD and give it a fair chance. I have highlighted some of the problems with Your list, for people with AS:



There is good information on the NSD Forum and good ideas for increasing safe food choices.

HEALTH,
John

I just looked over the food on the list..
Im a food addict. I attend meetings (like AA) and in order for me to have a happy sane life I have given my will over to another person that gave told me what to eat. This is how I do it and I have lost 104 lbs in less then a year.

I am new and you all use terms that I have yet to figure out what they mean. I have yet to be to the doctor again (Going to wed) since diagnosed so I have been on my own trying to figure it out since I got the phone call. so when you peope use NDSA or something I have no idea what you are talking about.

So if you have suggestions then I am all ears

The yogurt can be changed to milk, cottage cheese, cheese, eggs, soy.
THe cooked veggies.. I just steam a veggie
The fruit, I normally have an apple to banana.
Oats- I believe we need some sort of grain in our diets to be 'healthy' correct? How else do you know to get your grain in? Oats can be changed with shredded wheat, cream of wheat, Uncle Sams Cereal, Puffed Rice..
I basically don't eat Flour and Sugar
so thats that

REDUCE THE FOLLOWING

1. Bread and flour products:
Bread (white, brown, wholemeal, etc.) in very limited amounts.
Crispbreads, biscuits, cream crakers, twiglets.
Cakes, puddings and pies.
Pastas, spaghetti, noodles, macaronis, pizzas, chappati, pitta bread, popcorn.
2. Rice
Brown, white, boiled, fried or in puddings.
3. Potatoes

Chips, baked, boiled, roasted or mashed potatoes, and potato crisps to be avoided.

INCREASE THE FOLLOWING: EAT PLENTY OF PROTEINS, VEGEATABLES, AND FRUITS:

1. Meat
Beef, pork, lamb, sausages, bacon, salami, pate, corned beef, potted meats, ham and veal. Venison. Chicken, turkey, duck or any other poultry meats.
2. Fish
White fish: Cod, haddock, plaice, dover sole.
Herring, salmon, mackerel, tuna, sardines fresh or tinned in oil, brine, or tomato.
Shellfish: Crab, lobster, prawns, scampi, cockles mussels, oysters.
3. Milk and Milk Products
4. Eggs
Prepared in any manner.
5. Vegetables
All green vegetables, cabbage, cauliflower, sprouts, courgettes, peppers, mushrooms, spinach, broccoli or carrots.
6. Fruits

All kinds of fruits.

NORMAL INTAKE ONLY: FATS AND SUGARS.

NO RESTRICTIONS ON BEVERAGES OR SPICES

I guess this is what I was looking at.. it says REDUCE rice and such. 4oz a day I thought would be a REDUCING
thats all I was refering to.

I had asked about the DIET with my rheumy. His comment was that placebo's were effective 50% of the time. He meant to say that the diet will work for some and not for others. I don't believe there are any long term studies for a diet protocol? If not, there really should be. For me, since I am diabetic, I am already on a low carb aka low starch diet. I tell you that I saw no difference from before and after.

This is not from a rheumy who is anti-Ebringer. In fact, he admits Dr. Ebringer will be proven that he was correct given time.

Hi cryssfriend,
Welcome to KickAS.org.
NSD and LSD means 'No Starch Diet' and 'Low Starch Diet'. What people use to test for starch content is a bottle of iodine. If the iodine turn black on any piece of food, the food has some starch in it. There is also starch in pills, drinks, lunchmeat, and all sorts of things we wouldn't expect, including fruits and vegetables, and even some dairy. Coincidently, my wife is out buying me a bottle of iodine right now (if she can find it at walmart).

There is a subforum here dedicated to the no/low starch diets if you are interested. There are alot of people here doing it.

If we must have our grains, I think working with whole grain foods only is our best bet. The less processing and ingredients the better. This is how it is for me. This goes against NSD/LSD though.

Congrats on loosing all the extra weight. I wouldn't mind loosing up to 50 pounds.
Take care,
James

My beloved darlin horse - my lovely AMA La Duquesa. A Peruvian Paso, Darryn. Had to be euthanised, DSLD/ESPA. A very nasty, debilating, incurable, systemic and painful condition. Sigh.

PPs are lateral gaited. Real soft to ride, the 'Rolls Royce' ride. NO bounce. Just flow along, soft an sparkling. Wonderful horses for persons with AS, OA, RA to ride, cause they are sooooo smooth. NO soreness, ever.

I will only ride the soft gaited 4-beat lateral breed of horse. PPs or PP x RMH (Rocky Mountain Horse). Have to go rather a distance to ride em though...

PPs also have a great temperament. Just lovely to be around.

Kind of you to enquire, my thanks.

Kev,

I am with you on that one!

Lisa

i've never claimed NSD is A CURE FOR AS....this above statement is incorrect. please show me where i claimed this "cure" and i will take it back.

im not saying or ever said that any diet is a CURE for AS. What you are saying i said is totally incorrect. Im very aware there is NO cure for AS, but this doesnt mean "just give up the fight for a pain free life style"...for me anyhow.

Love you Molly...a true lady is what you are.

Im sorry to hear about your beloved horse, I know what an animal lover you are. I think there will be a special place in heaven for people like you that care for those that can not speak for themselves.

Lisa

OK, Lisa or Molly help me out. I have not read all of these posts but I happen to click on this and got your last one. What happened to Molly's horse? I know how she loves her animals and I am quite an animal lover too. Grew up riding horses.

Let me know.

Possi

Darryl,

how about bringing back your old sig -- it was interesting to those of us who have both determination and ability** to work on our diets.


** NOT meant to be a judgment on non-dieters reading this thread. There are plenty of reasons it might not work out for someone -- how about being on welfare because you're too sick to work and thus not having money to buy healthful food

So you are saying that if I, or anyone, accepts the right foods we'll have remission of AS. That's pretty much a cure.

How do you know it will work for me? How do you know it will work for anyone?
Just because it might give you some lessening of pain doesn't extrapolate into a blanket statement that applies universally.
If I am wrong, please show some studies (or even one study) where a procedure/diet/medicine that works for you proves that it will work for everyone else.

this is your opinion, not my statement.

Hi, cryssfriend:

Sorry, You are right but it think that even Ebringer would cringe at the oat meal (I'll ask but he once told us that any reduction in starches was a positive thing--it just may not show results as quickly), but not so much the rice, despite his perhaps unfortunate use of "reduce." His diet was sort of a compromise and was used in conjunction with enteric-coated sulfasalazine which has antibiotic properties.

In the early stages, until remission has been achieved, it is better to be very strict and even eliminate dairy.

Grains are not necessary, particularly healthy, or in any way natural for humans. Ruminant animals eat grains and are genetically engineered to process them completely.

Some vegetables cannot be eaten safely--like eggplant and some squashes (these must be tested after cooking) and cooking helps release the starch. I can eat raw carrots in moderation and raw cauliflower, also, but cooked they are each very provocative. Potatoes are of course way off limits.

I missed corn very much, so tested those tiny whole ears in can and they were safe (did not indicate with iodine), but I seldom eat these.

Bananas are way too starchy, and even apples must be tested. I think the only fruit that does not require testing are melons and berries and grapes are inherently safe. Some have perhaps had some trouble with melons at times as I recall from the NSD Forum.

Your diet is restrictive and should include nuts (except peanuts and cahsews)--best snack is raw almonds and raisins but even almond skins are too starchy for some. Walnuts, pistachios, and macadamia nuts are good. Tofu is safe and I have even prepared these as "steaks" with A1 sauce, which I don't react to. Actually many spices are too starchy for some, but I have never reacted to pepper and like Carol Sinclair also never reacted to garlic "flour" or mustard flour.

Please check out the NSD Forum for more food choices. I have even obtained those starch-free (and calorie-free) "noodles" and the "flour" (it is a mushroom fiber).

The NSD is inconvenient and somewhat frustrating, but it certainly beats the alternative in my case--I had too many episodes of iritis and suppose that I'm the one who ate starch until I need glasses {:-))

HEALTH, regained to a greater measure than You ever expected through Your own efforts,
John

"Professor Alan Ebringer and his team began trials to assess the effectiveness of a new dietary approach to treating AS. A good deal of success has been reported by many AS patients enjoying great relief when following this diet. In this section you'll find the dietary recomendations, various notes and several of the papers Prof. Ebringer published on his theories of molecular mimicry and autoimmunity."
https://www.kickas.org/index.html (KickAS.org : Diet Centre)

Good deal and great relief does NOT mean it works for everyone, would not be classified as a cure. It has consistantly been shown the diet does not work for everyone.

sorry to hear your horse is no longer with us. very fine looking horse indeed. RIP

so the whole Diet Centre of this very website is a waste of time is it? just there to make this site look pretty?

No it is for those who CHOOSE to try it not have someones opinion shoved down their throat.

Free will and all that..what works for 1 doesn't mean it will work for everyone.

the medical centre proved fruitless for me, and ive got AS. so drugs dont work for everyone either -so is this whole MEDICAL CENTRE section of the website useless as well? MEDICINES didnt help me. can you please give me link to any study that proves medicine is the answer for everyone would be great.

Nobody here (last time I checked) is trying to force their opinions on others...diet or medicine.

I tried the diet to the best of my ability and did not get the relief I felt like i needed. Now that I am on Remicade IT has provided me with the relief I needed.

YOU seem to continually be the ONLY 1 taking issue with "the diet" and anyone who doesn't agree with you. Last time I checked this wasn't a democracy!

You have issues with KickAS, the diet center, those of us who choose not to follow YOUR way of thinking you know what you can do!

Last time I checked everyone else here seems to be happy with KickAS and its forums but I am also use to people here being kind and courteous and in support of one another!

by darryl...do you mean me?
do you want my food list sig put back? (food list i eat)ill most certainly do this for you my friend with great pleasure.

Hey, Darryn:

It is in "...Cross-Tolerance Hypothesis" paper:



Actually one of the wrong-way patients was ratted out by his son years after the study: "Dad always has a potato with dinner; says it is not really a proper meal without it." For purely scientific purposes, Ebringer kept him in the chart.

The instructions were to "follow the London AS Diet as closely as possible but within your comfort level."

ESR tzero and t+nine months.

I say it does not work for every patient, but what removes their subjectivity? ESR for patients who indicate disease activity, but the better tests are not available.

So if a person goes from ESR=77 to ESR=53 after nine months, will they be aware they are getting any better? When the pain needle is pegged, it is difficult to tell and in this case way too subjective. Some of these people will take over 2 years to become pain-free thanks to diet. That is why it is better to start off much more strict.

It is very easy for people to get frustrated even before 9 months, but especially if they are not more strict than the LSD.

bon appetit,
John

Ah, Molly:

Not a dry eye in the house, now!
Can't imagine losing a horse (another reason I don't have one), but have lost many pets and it is never easy.

Best to You,
John

the truth is out there
ty John

Jet, aka Darryl, aka Darryn..

yes, please

I hadn't gotten around to even looking up what some of those foods are yet. Maybe I know them by another name (zucchini vs corgette etc)

molly;
you're awesome
*hug*

Hi all, I am only new here but would like to add my 2c if thats ok.

Along with just being diagnosed with AS I have a number of problems with my digestive system and allergies.

I have been on a nsd for some years now and cant eat most fruits as I get mouth and tummy ulcers from acidic fruit.
I also dont eat processed meat as this upsets my IBS.
My diet basicaly consists of fresh meat, fish, chicken and vegies.
I do not eat lollies or sweets or drink soft drink ect..
The only thing I do have from time to time is a sugar in my tea and a little milk but I dont eat cheese or other dairy and only have milk in my tea every now and then.

I have seen no marked improvement in my pain, infact the opposite is true for me. I will stay on the nsd as it helps with my IBS but I honestly havent had any benifit as far as other pain goes.

Hello Aussiegirl

I for one think your 2c was well worth the money!

I'm sorry to hear about your long list of problems.
you've really got a hell of a lot to cope with and to try and treat. It must be a nightmare for you to treat one thing and potentially set off another. I'm very interested by your experience with diet. You've shown very clearly that the diet is not working for you.

The NSD works great for me at the moment. It has not cured me - it keeps my symptoms under control.
It would be nice if there was a "cure" for AS. It would be nice if it was as simple as one diet fits all. But that is clearly not the case.

Everyone is different, everyone's bodies react differently, everyone has a different combination of symptoms and related diseases and everyone has varing degrees of damage from AS.

In addition to this there are a number of different "triggers" for a flare up which are not realated to diet - such as stress and pysical trauma.

I believe in - trying out all the options that are available to you until you find the one that suits you best and that you are comfortable with. Everyone is different. End of.

sorry to hear this diet didnt work for you - 2 years is certainly a long time to practice diet.

Thanks you for the kind words - Bridget, John our Dragon Slayer, Lisa, Joyce (Joyce, sent you a pm), and 'he of many names', Jet I think is the present one? 'Smile'. Thanks.

Yepp DD (darling Duquesa) was awesome. I shall miss her forever.

Molly C (France)
Keeping on Keeping on (One keeps on a staggerin on, innit!)

Ah sorry Molly
I didn't see the part about your poor horse.
I bet you will miss her forever. How sad.
xx

Hi, aussiegirl:

The NSD held only spotty results for me, initially. Early on, I began using antibiotics and it took several courses of powerful antibiotics to 'make the NSD work for me,' but it finally did.

I was in the mood to get better and figured I would give Ebringer's "theory" a real test, so purchased some antibiotics--in fact down in Mexico I bought just about every inexpensive oral one I could find. In a single-blind study of one, I found that drugs which have no anti-Klebsiella activity also have no anti-AS symptom activity--learning this stuff after the fact, since I was travelling and did not have access to internet for some time.

Eventually, I developed my own AP (Antibiotic Protocol) for AS and have made it available as a general guideline for others to begin their process. Send an email request to me, if You are interested. The RBF (Road Back Foundation) has a list of physicians who treat autoimmune conditions using antibiotics and You might find one able to design a programme for You, whether or not based upon my own AP.

Another person did not have such a good result on NSD but he required chelation to get the diet to work. I cannot explain this very well, but heavy metals like cadmium, lead, mercury, etc, could contribute to any disease and even cause arthritis (cadmium especially) or an environmental sensitivity as You might be experiencing.

The NSD is not the end of the line, and I hope that You will be able to get off the mark in the pain department soon!

HEALTH,
John

wish this guy would let it go.If it works for ya great.We wont push drugs on you,if you drop all this nsd stuff.

I am not easily offended by anything you said, nor soft headed. I teach high school, therefore I have a thick skin and don't take things to seriously.

Having said that I must share why I am not on the NSD. I have been on Remicade and now Humira for years. Part of my happiness in life comes from the enjoyment of breaking bread with friends and family, and to me the NSD it is just way too constrictive and inconvienent. I have NO desire to even attempt what you do everyday, and by the way I think it is great that it works for you. A huge part of my quality of life has to do with cooking, eating and being with friends and family. The thought of the micro-managing that comes with that doesn't appeal to me in the least. This may not be as important to someone else.

Life is tough already with dealing with this stupid thing at times, I refuse to let it control every morsel of food that enters my mouth.

It really was not a hard decision for me. I think we all have to chose what works for us. Who am I to tell someone else what to do?


A:)

its dropped...its off chest - gone forever. enjoy your dinner

AMEN!

Hi Jet,

Yes, unlike you, I'm soft in the head! It's called a brain.

Sorry if you are offended by that.

James

oh no, you weren't kidding when you said this movie got the gait wrong, hmm, sorry, I get it now!

Dow - love ya! Now, take a look at Dragon-Slayer. Look at the movement, no jerking. With lateral gaited horses, the back does not move under the rider. The back is steady. When in the ring, the judge looks at the knees of the rider, IF the knees are jigging then the horse is not 'smooth' and will not get a ribbon. Riders 'try' to cover their knees for the judge... In the PP show ring, we wear ponchos, classical Peruvian dress code. So of course, it is quite easy to pull the poncho over the knees - but, the judge 'can' ask for the knees to be uncovered. It can get quite funny. At one show, one of the top chalans (trainers) was making a HUGE deal of covering his knees. The judge asked him to uncover, not a jiggle in sight. He'd been making a deal out of covering so that the judge would give him more notice - and push out the opposition. Yep. He got his 'smooth' gaited ribbon. <LOL>

Also have to check out the top line, check for movement as well. That's when the champagne class comes into its own. Ride holding a glass full of champagne. The judge gives 'gaiting' orders: turn, gait, paso-llano, sobreandando, walk, turn, etc etc. Rider with the most champagne left, gets the ribbon. Fun class. Think it was a fourth place I got in that one.

DD was always in the ribbons. Champion breeding mare; champion of champion performance horse; ribbon for gait etc etc. She was a whizz. Sigh. But, was soooo lucky to have known her AND to have owned her. WOW. Wonderful memories

Thanks Dow. Lovely to 'see' my gal there - even though she *is 'bouncing'...<VBG>

Molly, that is so cool! Of course, the more you have left in your glass at the end, the more you have to toast your win with!

See I would be no good. I would drink the glass then just try and chat up the judges. LOL

On a serious note I used to break horses and show them in my youger days.
I know I know Im not that old but it still seams like a milliion yrs ago. LOL

Gosh - 'breaking' horses. WOW. I love the Dorrance bros work. Superb - it was on the Dorrance ethos/methodology that Pat Parelli has based the whole of his training protocol. Paul Dufresne, from whom I bought DD, is an exponent of Dorrance, and then into classical riding and cicenesque. Facinating. Though Paul always says, IF you like watching paint dry, then watch him...! The small movement, the nuance - body language. (Can't stand badly trained horses, too scary, won't go near em!)

OK. Don't get me started on horses, will not be able to 'dry up'...<LOL>

My last comment...Please listen to the moderators and the administrators who run this forum. They deserve our respect.
If they ever ask me to let something drop, it will be dropped so quick and hard that it will shatter.

I realize I don't have to read this but I caught myself doing it this morning. I know it helps you. I know Remicade helps Lisa. I know some are helped by Humira. Some by Enbrel. I am thrilled for each one of you that have found what helps you.

I have tried the diet and it did not help me. I talked to my dr. and he ran the blood tests that showed that the diet won't help me. I also decided to just enjoy what I can out of life and part of that is having my family and friends over to eat.

Also, there are so many days that I do good to even get to the kitchen, much less try to figure out what we are going to eat, so it is a bowl of Cheerios - whole grain with blueberries or strawberries and call it a day. We do have one good cooked meal a day.

I wish the best for each of you and I am very happy for each of you that have found something to help you. For me, I don't tolerate the biologics, am allergic to anti-inflammatories, steroids have wrecked my body especially my intestines so just do what you can and what you have to for relief and protection for your body.

AND let's let this drop or move it to the diet forum where those who are very interested in the diet can read to their heart's content. Yes, I know I don't have to read it.

No offense to any one. I just feel we need to respect our leaders who work so hard for us to have this forum.

Blessings.
Possi

Hi, Possi:

In Your parting shot, You have made a claim:



I cannot figure out what this means, unless he decided that You do not have AS at all. Is there a blood test predicting the outcome of diet?!! I would like to know what test that is, specifically. There are plenty of tests of which I am certainly unaware.

Of course, You did not just find another doctor willing to tell You what You wanted to hear, that would border right on malpractice.

Now who gets the MALARIA award for resurrecting a long-dropped post?!!

Good Luck,
John

Well, I am not really sure but I will find out. With the Lupus, I am sure it had something to do with antibodies. My PT had suggested this diet and I told the dr. He said to let him do some blood work first. He did and called me and said that the diet would't help me. I should have known more before I said anything. I will find out.

Best to you John.
Possi

no offence taken

Thanks, Possi:

It would be nice to know. I don't remember whether Your primary diagnosis is AS or SLE, but if SLE I wonder whether it would be HLA DR2 or DR3 opposed to HLA B27; albeit not mutually exclusive.

HEALTH,
John

My primary diagnosis is SLE and then came RA and AS and all of the other stuff that follows...Sjogrens, Reynauds, Hypothyroidism, Iritis and on and on.

I will find out. I just haven't gotten it done yet. 2 dr. appts. yesterdayi and a friend in the hospital and just tired.

My PT told me to do it anyway that she thought it would help me. I did it for a while and didn't see any results but I am not sure I did long enough and the dr's thought just kind of mde it easy to quit. If I were getting results, I would have stayed with it for sure.

Be in touch when I find out.

Possi