Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group how many grains of rice could cause a flare up?

Hi Pete,
Im the same as you I can eat anything and it makes no difference to me. IMO The diet works on people because they have starch allergys. I know a lot will disagree and thats fine we are all entitled to our opinions.

Kevin

White rice or Brown? Does it make a difference?

James

Hey Pete, the reason it doesn't work the same way for everyone (in my not so humble opinion) is that we are all different. I don't react to rice at all, but wheat is brutal for me. I can eat as much popcorn as I want, but have to watch potatoes (and yes, a watched potato does do tricks).

The NSD does not work for everyone, again, because we are all different. I have come to believe that there is a subset of AS patients who have a kleb p. connection, just as there is a subset of AS patients who are B27-. Within that subset are different groups: some have to eliminate starch completely; others can have good results by reducing/restricting starch intake.

The other thing to bear in mind is that just like any other treatment, it can take time to take effect. Generally, it's best to try going NSD for at least 2 months before determining whether or not it's helping.

Hugs,

Hugs,

Thanks, all! Yes, I'm hla-b27 positive, and mostly a vegetarian (I do eat fish and some other simple sea-food like clams, etc, but not lobster, crabs, etc.). While I do have a huge problem with heart-burn (gerd? AS related?), starch has no impact on me. Granted, I've never gone without for an extended period of time -- heck, I'm Italian, what would I do without bread?

I think the best answer of all is that there is a certain portion of those with AS for whom starch is a problem.

Thanks again for all your great responses.

Hi, petesimac:

It goes something like this: Rice is a natural starch and has very large particles, even after thorough mastication. Flour products, on the other side, have extremely small particles and during digestion the majority of these particles are seeded with the nemesis bacterium. Now there is a massive biosurface (colloid) within which these bacteria multiply. A fellow ASer contacted me and told me he could eat quinoa and yams, but not yam soup--that cause him to flare. Yams have more fibre than potatoes and are a bit less starchy, but turning them into a soup reduced the particle size enough to cause substantially more bacterial multiplication than yams in the natural state, so the soup causes a flare but natural tuber did not. Flour products are much worse in creating the optimum condition for bacterial multiplication because of so many more individual substrates.

And they multiply at the familiar geometric rate, so stuff that will slow down progression of food in the tract--proteins and fats, for example, will allow for much greater populations. Food digesting for the third hour might have 50,000 Klebsiella, but staying longer in the gut only by doubling the time it takes for digestion and there are almost 500,000 Klebsiella by then and this reaches our 'Crohn's-like microlesions' or the permeable section of our intestinal tract and the statistics dictate that enough bacteria will interact with our immune system that a flare will ensue.

So a person can fool themselves by combining starches with a meat--like oh, say, a T-bone steak--and try to blame the meat. It actually happens! But it is food combinations that can be the key. And another thing--(yes it is more complex) we can eat fried stuff that might alter some of the cooking oil from hydrophobic to hydrophilic, so it sticks to the walls of our tract and captures digesting foods and directs them into our lesions whether laden with Klebsiella or not.

The whole thing is complex enough that it frustrates our ability to detect which foods do what to us--especially if and when we take NSAIDs or other agents which dull our senses and quash our ability to discern when we are flaring or whether we are just in one long flare.

People unable to quit the drugs and unable to exclude starches will always have their cop-out and find a reason that "the diet does not work for me" and their subjective observations are understandable but should be dismissed equally with those who claim diet is 'merely anecdotal.' We have plenty of 'anecdotes' who are avoiding skeletal damage and enjoying a more normal life, if unfair to the extent that life is not so fair because we cannot eat what the majority of the population consumes with impunity.

Some of the foods that tipped me off (before I began taking NSAIDs) were 1) Fried rice 2) Papad (Indian pan-fried bread) 3) Onion rings 4) Just bread and mayonnaise cause a severe flare once and I tried to blame the mayonnaise!

One fellow ASer wrote a book--"Food Combining for Vegetarians;" Jackie LeTissier recognized that there is a starch connection with AS, but she managed her disease by not combining starches with proteins and fats (the "Hay Method").

BON APPETIT,
John

Pete, I almost married an Italian, so I know what you mean!! I learned to make a wicked sauce from my almost M-I-L (from Abruzzi) and when I had to drop wheat it positively decimated my diet. Thank goodness for rice pasta and corn pasta (both gluten and wheat free)!! I miss good Calabrese bread (his dad was from Calabria), tho. I have yet to find a gluten free bread recipe that cuts it. There are one or two that almost come close, thank goodness.

Just stay aware of what various foods do to your body and try eliminating those that appear to cause problems for a couple of months. Once they've had a chance to fully clear your system, reintroduce a very small amount and see what happens. Our bodies never lie to us about these things, we just need to learn to listen. You'll figure out quickly enough what triggers. It might be starch in general, or it might a specific form of starch, or it could be a specific starch in combination with something else. I'm generally pretty OK with cow dairy at this point, the little that I eat, and I do have teeny bits of wheat every so often that I seem to tolerate kind of (not quite, but kind of), but I can never never ever have the two in combination with wheat again. Ever. It is horrid for me, as much as I love the combo from a taste standpoint.

John has found full NSD, fasting and antibiotics are keys to his treatment. I have found a mixture of the LSD, biologic, and lifestyle changes to be my main keys for the time being. You'll find yours two. It won't be exactly the same as ours, necessarily, but you'll figure it out.

Hugs,

Rest assured, there's no way in hades that I'm going to stop eating starches. John's kind response to my question seems to indicate that nearly everything can cause a flare if combined with the wrong thing. Add to that the fact that I've discovered no relationship between food that I eat and flare-ups. Granted, I could stop eating everything and then add something for a day, but as there are millions of things I could eat, it might take 100 years to figure out what, if anything, is causing the flares. Needless to say, I'm a sceptic.

Maybe you don't have AS?

Do you have ANY daily pain?

Maybe you're just lucky?

I didn't notice a difference with what I ate BEFORE I started the NSD. FOR YEARS I HAVE BEEN IN PAIN ALL THE TIME - SOME DAYS WORSE THAN OTHERS!!!

Then I started the NSD (slightly skeptical, as I am HLA B27 -ve...), and over the months I have LOST or SIGNIFICANTLY REDUCED the pain in many areas - my SIJs, back, thoracic spine and ribs, feet, neck...some days these past couple of months I have had NO PAIN in my SIJs - MIRACULOUS!!!

9 months into this, I am still getting better, and am still getting episodes of worse pain when I think I can cheat... I think you need to try the STRICT NSD for 6 months before you decide that your life CAN'T be improved by it!

You may never know what benefits it can give you if you never try for yourself,

All the Best,

Hey Louise,

Speaking for myself, not choosing NSD as a treatment of choice or not having noticed any relationship between AS pain and food, certainly does NOT put my diagnosis into question.

I appreciate the desire to encourage and to wish your same success on others, I feel the same passion about Remicade, yet I truly respect everyone else's treatment choices. We are all the same and all a bit different too ... (oh, lol, there are about a billion rhymes that could follow that!) Petesimac has been a member of KA since 2004, btw.

Cheers,
mig

nothing wrong with a healthy argument about any issue. The more angles we see the issue from the better our understanding.