Kickas.org Forums Treatments, Drugs and Alternatives NSD and diet-related; Two months of diet

I hoped this post will be much more positive after good experiences I have in the first few weeks of diet but...
In this moment I am analyzing where did I go wrong. When I started diet in begining I felt substantial relief as my back pain was gone and stiffnes in the neck was a little bit weaker. Generaly I felt better, I felt more flexible and my posture was better. All food I have tested I did it with povidone iodine.
From this point of view I see that it wasn't NSD but LSD because many grocceries showed starchy when I replaced povidone iodine with Lugol's iodine solution which showed me that carrots,cabbage,zuccini,tomatoes,apples,pears all were starchy. After that I am on NSD without dairy and nightshades from beggining.
Soon after that I have experienced pain in my neck, shoulder and left groin, and it lasts for 3 weeks already. I sleep pretty bad, turned on one side and wake up early because of pain. All this time I didn't take any NSAID, I am fighting pain using TENS.
I am streching and excercising as much as I can and after that pain becomes stronger.My exercises are pretty demanding but also I am doing it for years.
Before diet I was taking pretty much yogurth and old cheeses, and I thought maybe that reduction disturbed intestinals although cutting off starch helped me. Disturbed in the way that it maybe reduced good bacteria in my intestines as I don't take any probiotics as they all contains starch, soy, wheat and so.
I have also reduced supplements and vitamins to try to eliminate possible stealth starch although all labels on them are "no starch,gluten,soy,wheat,arteficial flavor...",but without result. Water kefir cause nausea and I couldn't use it.
In this moment I am pretty discuraged, taking Curcumine for two weeks and hoping that pain will vanish...but it lasts pretty long already.

What do you typically eat from day to day? What kind of nsaids did you take in the past and for how many years? So you are taking no meds?

I can get a flare up from too much exercise or activity. You mentioned your exercises are demanding so I don't know if you need to scale it back. My doc told me to just walk for exercise but my disease is severe.

I am pro good probiotics to heal our guts. Have you tried different brands? I have heard that probiotics can be harmful to us with autoimmune disease so I find it interesting you found they contain starch.

Are you willing to try any meds? I find I need the combination of low starch/gluten free diet and my meds to feel better.

Shari

About food I take it would be like this: salmon, mackerel, sardines, squids, none of them canned, brocolli, beet, celery, blanched almonds,eggs, mushrooms, spinach, blueberries, beef from time to time, pineapple from time to time, raw honey, green olives and grapes. All of these food I do test with iodine.
As I said I used NSAIDs very rarely, like 2 times per month. When I had major attack of AS in 2008. I used Diclofenac Duo for 6-8 months 1-2 times daily.
In this moment I didn't take NSAID for 3 weeks already, as I use TENS and Mydocalm (myorelaxant) 2-3 times per week.

My exercises didn't make any problem to me until last three weeks. It reduce pain sensibility level and enhance level of endorphine. In this moment I am not willing to try NSAIDs as they increase permeability of intestines which levels up autoimmune response forming vicious cycle. If I don't find other solution I will have to take some meds.

This might be bad advice, and you might not want to follow it, but I would suggest easing back up a bit an including the other fruits & veggies you cut out like the apples, pears, cabbage, etc. And for me a starchy supplement or pill doesn't make any difference in my pain levels.

I would suggest getting easing up on yourself and the diet, so that you have a wider variety of low starch fruits & veggies, but still avoid the obvious grains, potatoes, bananas, legumes, etc. It seems you were on the right track, and sometimes over stressing it with foods can cause metal stress which I believe can turn into physical stress.

There are definitely some people with AS who cannot tolerate ANY starch whatsoever. Just like I personally cannot tolerate any tomatoes or dairy whatsoever. But I still leave my diet pretty open for occasion zucchini, or other slightly starchy veggies and do pretty well with it. I think once the klebsiella bacteria is under control and doesn't have a steady diet of starch it dies back, it seems like some of us can feed the klebs something starchy on occasion for a night, and then go a few days of being strict, just being sure not to feed them starchy goodness continually.

Also, the first 6 months on this diet were a rollercoaster of pain levels for me. I honestly think everyone needs to give this diet 6 months before drawing any conclusions. I have heard many others say the same thing.

As for probiotics, I suggest fermented sauerkraut.

And if this is bad advice, I apologize. I am only sharing what has worked for me.

Hello there,

Sorry to hear about the pain, the first several months for me were up and down as well until I was able to find all the starch.

If in a lot of pain, I would continue with your medication you were taking if helps... this is not a race and you can complement diet with medications. When you feel better can reduce and finally eliminate... that is approach I took.

Personally I would keep supplements out unless you know they are safe... personally I tried a few that put my pain back to 6-7 pain level in my hips. The other fruits that you tested and showed starchy could have very small amounts and you may be able to handle them. Have to listen to your body, but that is more difficult if currently in pain.

I agree that you may have changed balance of bacteria.. may consider sauerkraut or organic yogurt with probiotics.

Hang in there,

Tim

Betty thank you for your answer,
I was thinking same thing as you do and I will try. Since I was using yogurth all my life and there weren't any intestinal problems connected to my AS I guess it will be ok to try goat yougurth. Also I will try to bring back apples and cabbage as I didn't have any problems with it in the first several weeks although I ate several apples a day. However iodine test will protect me from starchy food so I will stay on same course anyway.
I hope it will bring improvement...

What would I say about pain, it is much stronger during the night and I didn't experienced in such manner before. So I concluded that I go wrong somewhere and maybe good bacterias in my intestines payed a price of strict diet. I hope I will be able to normalize that and see if that was the reason. Fact that first 3-4 weeks were really good and showed improvement brought me to such conclusion...
Hope to find out it soon :-)

It sounds like you are doing a really good job with your diet. If you are in a flare up, just walk for exercise or be in a warm pool or bath to stretch out. Have you tried any topical NSAIDs, like Voltaren? I use Voltaren gel now instead of oral NSAIDs. Maybe a Prednisone dose pack could get you back on track too. Sometimes we gotta do what we gotta do. Hope you get some relief soon.

Shari