Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group There is very little evidence diets help AS.

Some time back, I was asked to be on a clinical study for a new (at the time) biologic drug. I later found out that it was Humira. I turned it down because, in order to be in the study I had to drop all the treatment I was doing, and take their drug. Well, at the time I was on Indocin, which was working wonders for me. I knew that it was because when I forgot to take a pill, that very day I would feel the difference in a major way. Like Darrel mentioned with the NSD. Being in the study gave me a 50/50 chance of getting real medicine and a 50/50 chance of getting sugar water. I was not willing to take that chance. And that's why you would have a hard time doing a clinical study on the NSD. Anyone in the study on the no NSD side would have to give up all other treatment. Who would be willing to do that??? Just a thought.

Dean

Okay, so i've figured out how to do the quote thingy, watch out people!

Kidding aside: I've posted before, my sister-in-law is doing a grain/sugar free diet for her thyroid auto-immune disorder and she's having success with it - I think her nutritionist is going on the leaky gut theory, because he's told her she's malnourished. I've also read excerpts on how the Paleo Diet (grain and dairy free) has helped with Auto-Immune disease.
While the feeding/starving klebs explanation seems right to me, I also think there's more at work with diet and the immune system. but that's just me being wishy-washy.

I don't have an auto-immune disorder, I'm not HLA-B27 but I am married to someone who does have these things (Dow) and when he said he wanted to try the NSD diet a while ago, I said that I'd also do it to support him and because it wasn't fair for him to have to give up pasta and watch me eat it.

After several months of the diet, we determined that it didn't seem to be helping his pain level much. But, oddly enough my sciatic pain had virtually disappeared. My chiropractor can poke at me and remind me that it's still an issue, but it never keeps me awake like it used to. I used to take 4 Advil just so I could get through the night. I gradually reintroduced starches into my diet and discovered that I could tolerate wheat (whole wheat and multi-grain is better) and could not tolerate potatoes and rice. And have recently determined that rice is worse for me than potatoes. I have no idea why.

So I have to say that the NSD diet "worked" for me, a non-AS person because it helped me identify certain foods that were causing me pain.

I don't think it's quite fair to make a blanket statement that the NSD diet "doesn't work" because clearly it works for some people and not for others. I would encourage folks to try some form of it and closely monitor what they're eating and their pain levels. You might identify particular foods that your body doesn't like and can take steps to avoid them.

Thank God for Agnosticism!!

I love that! Thank you!

And thanks for your response, Dow. I know several people through my co-workers now who have some form or other of arthritis. I've suggested they contact T.A.S. when they seem to be grappling with coping. Too many of them said, "Oh no, they're in the back pocket of big pharma." Now, this had nothing to do with them actually having looked into anything, but with what they'd 'heard' from someone. They don't take my word for it, because, what do I know. I've only used some of the services, volunteer for them 12 weeks out of the year and do fundraising. I count among my friends Directors of both the provincial and national associations and they are the people I grilled on this specific issue.

I want to shake them and say, "Do you really think I'm sort of sheep that only goes where my flock does? Do you really think I'm that stupid that I would devote many of my off hours to something that is so hiddeously biased as you think this organization is?" But I don't.

Because they're people I'm trying to help and you don't berate, belittle, or besmirch the intelligence of someone you're trying to help.

Which brings us to some of more foul posts in this particular thread. And I'll leave that there, because I believe the paragraph above says it pretty damned well.

Now, as to your slogans....

Six of one, Half dozen of the other
Here's to double-edged swords
Middle-aged mutant ninja wafflers!!

Warm hugs,

marshamm, you're one of those super-dedicated loved ones I mentioned in an earlier post... I've got one too, one who doesn't do so well on a totally starch-free diet but avoids potatoes for my sake

Hey, would you mind listing off the things that were considered "ok" for your and Dow's NSD diet trial? And also under whether you used the iodine test, if so under what circumstances (test every batch of fruit/vegetable vs. once for each type of fruit/vegetable, did or didn't test every type of supplement and pill, every type of spice?)

Hi Marsha, glad to meet you.

You raise a very good point. I wonder if it has less to do with eliminating all starch, and more to do with finding out what your body specifically reacts to. In my case it is wheat. Flat out wheat. In any form. It makes my eczema come back, my AS always feels worse when I eat it and I get that horrible lead-belly feeling if I've had too much. I've also found that gluten bearing grains in general aren't great, but I can get away with those in moderation (I generally don't go there, however). Potatoes are not great and I must watch how much I eat. Corn is OK for the most part, but rice is absolutely fine. As are quinoa, millet, kamut (but it has gluten) and spelt (gluten as well). I don't react to beans or nuts or any other starchy fruits and veggies. Actually, my sinuses clear when I eat some fruits, so I don't know what to think about that.

I'm so glad that you found this out for yourself. That you found out in trying to support Dow in his efforts, well, you're a class act.

Hugs,

Brilliant, Kat!

Those of us in the middle-of-the road tend to get run over a lot, don't we?

Hey Dow, with a wife like Marsha you can get run over a lot and still have a lot of support. You lucky dog.

Salutations Marsha - terrif to hear of such (*your) splendid support for Dow and to know that a modification of 'the' diet has helped you find relief from sciatica pain. Bless, and -

Thanks for posting -

Molly C (France)
Keeping on Keeping on

You know, just when you think you've got a handle on it...a Mack Truck appears driving down the centre line.

Warm hugs,