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

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I went 6 months very strict NSD. 3 months into that I dropped all dairy. I promptly lost 35 pounds, (175 - 140), and my friend thought I had cancer. A couple of times I thought I was making progress and was ready to post a success story only to fall back into the usual symptoms. My CRP and ESR never fell the way many said it should no matter how strict I was. I remain on a LSD diet as it seems to help me some and I eliminated some gut problems by staying on it. I have been on LSD for almost 3.5 years now. ( no grains no potatoes,, rarely cooked rice)

I am grateful for trying the diet as I believe I am healthier than I was before but to really go after it I would have to try the antibiotic route, like John had to, to see any serious results. I am not ready to do that at this point for many reasons.

Simply put, either I had AS long enough, 14 years or so, when I found this site that the antibiotic route was the only way I was going to see success or it does not work well for me. Take your pick but this is a disease where one treatment does not seem to fit all that is for sure. I will remain on LSD and a TNF in hopes the LSD may help some. It is easy now and I know it helps my gut feel much better.

Best o luck

(yes I am HLA-B27+)

The thing that raises questions for me is when I hear of people on strict NSD regimen who still flare, or they say that "most" of the pain is gone or that they don't flare as often. Things like this just convince me that it works for some, and not for others. But then again, some people feel better after taking a plecebo; have there been double blind studies on this? Even so, with so many different "types" of AS, how in the world can anyone say that this one treatment will absolutely work for everyone? Heck, the symptoms aren't even the same for everyone.

And yes, I have AS; my uncle has it, my brother has it, and then in 2004, I got hit with it. I had a few episodes throughout my life but never put the symptoms together. Then when the "big one" hit, after being scared that it might be cancer, I put the puzzle together, went to the doctor, asked him to test for HLA-B27, and both he and the rhuemy diagnosed me with AS.

I'm truly glad that NSD works for some, but I am not convinced, based on what I've read here and what I've experienced in my life, that it's right for me. No offense intended to anyone; we're all family here, yes?

Hi Mig and Petesimac,

Oops! I think I needed more smileys after those first questions, cos I wasn't trying to be disrespectful. Just making flippant reasons why you couldn't *see* that NSD could possibly be of benefit... Sorry if I offended anybody.

If it were as clear cut as some people think it should be then it would be obvious to us all and we wouldn't need to have travelled the l-o-n-g and painful road to get here to KA! It never occurred to me that there was *any* relationship between what I ate and how much pain I felt.

Don't I wish that it were clear and simple. I have been luckier than some to have seen *definite* small but positive results within a month or so, and more as time went on. I think that at this point in time I can sneak *small* amounts of some starch foods (a mouthful here or there of potato, half a spoonful of steamed rice...) every now and then, but I am convinced (by doing my own not-quite-double blind trials) that WHEAT is a killer *for me*!

I would also suspect that if you have had AS for only a few years there may be little mechanical damage and it may be easier to see if strict NSD (and all its more stringent variants) brings about results, as you don't need to figure out what is INFLAMMATORY pain, and what is of MECHANICAL origin.

What I was really trying to get across is that YOU don't know if NSD will work for YOU if *YOU* have never tried it.

Sorry again if anybody has taken offence at what I wrote. The wonders of the internet - no tone of voice or cheery face happy to debate a question, NOT start an argument!

Indeed, one big family - and occasionally even close family members disagree with one another. I love to have a decent discussion on all manner of subjects,and I like to explore *all* sides of the argument that folks can put forward. By questioning others how they arrived at their current position, and asking others to validate their PoV, it forces me to question my own, which is not in a steady state, but always open to modification, if others are able to add facts or experience that will help to alter my *currently held* position on XYZ topic.

Louise (always on for a lively discussion, but NEVER willing to pick a fight just to upset others...)

would it be fare to say even this type of study would not convince you NSD works unless you were doing these double blind studies using identical twins both HLA-B27+ with AS that lived their whole lives living in an identical environment, getting ill on the exact same day every time and eating the identical food (& quantity) for every meal since birth.

Interestingly, Darryn, there have been studies done on identical twins with regard to kleb. p. The studies found pretty much that kleb. p. proliferation was no different in the twin/family member with AS and the one without. That's very loosely put, by the way, as I haven't the studies infront of me and haven't the time to look for them. The reason as stated by Dr. E. was that the researchers didn't limit the study to AS patients whose CRP and ESR numbers were elevated, indicating to him that those patients were not in the middle of active disease. However, since ESR in particular and CRP to a lesser extent, do not elevate in all patients with AS (some rheumies are now figuring it out and no longer consider these accurate indicators of AS disease activity) I would say that Dr. E.'s research can only be valid to those patients whose numbers do increase.

A double-blind, controlled study would be impossible, as you point out. There is no guarantee that the patient is actually strictly following the diet and no way to force them to unless you put them in a prison cell for six months.

One note: as a new member you are not familiar with how divisive this particular subject has been around here. It has led to awful arguments (flame wars in reality), and there is a direct link between those arguments and some of our members who no longer come here because they no longer felt safe sharing here because of things that were said to them. A lot of heartache has been the result. Mig was on the ball with this one, even tho Inky was really only trying to be light-hearted as it turned out. Just wanted to let you know why Mig stepped in.

Hugs,

Sadly, it's not that easy. BECAUSE a fair, double blind study is either impossible or simply too difficult to conduct as it pertains to AS, it justifies my skepticism. AS is different, apparently, in nearly every single person it afflicts. The efficacy of remedies/cures/etc. varies from person to person. Therefore, without such a study, as difficult as it may be to conduct, I think that stating that a NSD will "definitely" work on every AS sufferer goes a bit too far. At least in my opinion.

I totaly agree with you on the first bit - a double blind study is near impossible to conduct to test the NSD because of the variation factor, however, this same statement would explain why NSD doesnt work to the same effect on every AS suffer because of the extreme variation of its application.

There could be a grain of truth in this!