Kickas.org Forums Treatments, Drugs and Alternatives NSD and diet-related; Reducing starch versus cutting it out completely

I have tried cutting out starch completely. I felt quite well, but I still had some stiffness in a morning.

Over the last month I have followed the diet less rigidly. In the main I try to avoid starch but for example I may have the odd piece of toast or an indian takeaway with a small amount of rice. To be honest I haven't noticed that this particularly affects me.

I am worried however, that if don't completely cut out starch that I will not benefit in terms of stopping/slowing down the disease.

Does anyone have any views/thoughts/similar experiences?

Michelle

Hi Michelle! I am wondering how was your pain level before you started the NSD/LSD? For me, my pain level was very low before starting the NSD, I decided to go NSD as I wanted to heal the iritis in my eye, and also to stop the progession of the disease so that I wouldn't have to go on any of the drugs. I stopped my ibuprofen [NSAIDs] when I started NSD and I have not needed to resume any. However, it is hard to know if it is okay for me to sneak a little starch here and there! It is so tempting...but the few times I have sneaked [on purpose or unknowingly!] I have noticed a difference! Particularily in my left knee and my iritis. So I have decided that I would continue being strict NSD.

Hope this helps! PM me if you need, I would love to talk with you more personally!

Rita

Hi, Michelle:

I have thought about this problem and discussed it with Ebringer directly. Apparently, the benefits of cutting out ALL starches is not totally blown by reducing starches to some "reasonable" level. Things like spices (Indian foods) and rice are not too bad, but his "four major poisons" still stand: Bread, cake, pasta, and potatoes. In my own experience I can counsel that avoiding all fried food, especially breaded and deep-fried stuff like tempura and onion rings is especially important, but if you are not on NSAIDs or other pain-killers and you are sensitive enough to how your body is reacting and some foods that are starchy do not cause you to react, I would suggest that you can maintain a 'mild' disease level.

The problem is that this monster can sneak up on us rapidly without enough warning, so at least you know what to do when that happens in the future.

The best combination in my opinion is antibiotics to take down the residual mini flares, but sulfasalazine (Azulfidine-EN) can do the trick (I sometimes take this during winters, since there is not that much sunlight) for breakthrough relief and Ebringer used the combination of this drug with his LSD for many years with great success on hundreds of patients (about 25-30% of the population cannot take sulfa drugs, so it is important to get a sample to try if you do not already know).

Good luck to You,
John

Common sense tells me that if I am not having any response or symptons from a food, then it is safe for me to eat, and I would not worry about the disease progressing if I eat it. I think variety is good for a diet, and sometimes worry that I don't have enough variety now on NSD, which is why I am experiementing to see how much my body can tolerate. I think I am finding I am not as sensitive as I thought, and I too can tolerate low amounts of starch.

How long have you been on NSD? I too still have stiffness in my back, which is worse in the morning. The more I move through out the day, the better I feel. I have been on NSD for about 6 weeks or so. But I have not been inflamed in the sacrum since becoming starch free, which is fantastic and worht it right there.

To me it is a common sense and experience thing. I had to go NSD at the start as I was in so much pain and could not really function. As I got a grip on the pain I found that I could maybe cheat a little, sometimes with painful consequences. I figure that we need to be as pain free as possible to exercise and stretch which we must do to stop our bodies stooping or twisting or whatever else the terrible thing called AS tries to do to us. So make sure that whatever you do LSD/NSD your pain level allows you to keep a good range of movement. Good luck George

Hi John,

just a stupid question: could anyone clarify the difference between sulfasalazin (I am on salazopyrin) and NSAIDs. I am quite igorant of other drugs than the one I use. Which is stronger?

Thanks
Andreas

Hi, Andreas:


NSAIDs are agents that disturb the activity of certain enzymes which are pro-inflammatory. The problem is that they also interfere with cell repair, so through this mechanism they can cause damage. The older, non-selective NSAIDs caused much more trouble and resulted in many deaths from spontaneous bleeding ulcers and many more ER visits. The newer, COx-2 inhibitor are slightly better and have reduced the complications but not eliminated them and as we have seen with Vioxx--there are always some unintended consequences in everything we do.

The difference between salazopyrin and NSAIDs is small, since the salazopyrin does have the mildest NSAID--5ASA--attached to a sulfa radical that acts as an antibiotic (the probable reason this is a DMARD). When coated, more of the antibiotic (sulfapyridine) is delivered closer to the active site of infection somewhere in the final area of the small bowel. Some groups are trying to research WHY the 5ASA component helps in cases of colitis/Crohn's, but it is more likely the antibiotic section that is at work locally.

Since this drug is often very effective against AS and is well-tolerated by many, it is an already-approved option, since it is more difficult to get antibiotics for long-term usage. I don't much like the 5ASA (pentaminosalacylic acid) component, but it is a very mild NSAID so does not help very much--or harm very much, either.

I would say that NSAIDs are MUCH stronger, and salazopyrin can take much longer to begin to show effects, but over the long-term the SZ is a DMARD and NSAIDs do nothing to stop the progression of AS (and in my case they accelerated my disease; I was a vegetarian). There is a place for NSAIDs in temporary pain relief, but they cannot be relied upon for long-term relief--we need real and actual healing from AS for that.

Best to You,
John

Hi Jeanne

Just to respond to your question.

I have been on NSD for about the last 7 months but have reverted to a LSD for the last couple of months.

I have been advised that I have a mild form of AS (fingers crossed), and at the moment I have only been diagnosed with sacroiliitis.

The stiffness in a morning started in February this year. I found that adopting a NSD helped with the morning stiffness and that I felt better overall. Since I have been on a LSD I have felt that the stiffness is worse (than it was on the NSD) on a morning, but overall I am still fine.

I generally stick closely to the NSD during the week, but I cheat on a weekend. My advice to anyone with a mild form of AS would be to follow the NSD as far as possible, but don't make yourself miserable following it to the letter. If you try small amounts of bread or rice you may well find that you don't feel any worse. I would suspect however, that people will a severe from of AS would benefit more from strictly following the NSD.

Hope this helps

Kind regards

Michelle

Thanks a lot John,

You really know the theory
I'm impressed!

I really really would like to stop using SZ but I need to get my NSD working better before this is doable. My poor Crohn gets upset when cutting down on SZ too much, which in turn cause my guts to leak and AS to get worse.
Lets hope for the best

Cheers
Andreas

Hi Michelle,

I was diagnosed with sacroiliitis 6 months ago, then tested positive for HLA-B27.

I didn't feel the stiffness in the upper back/should/neck area until the inflamation in the sacrum went away. I guess the pain was so great down there, I didn't even notice the pain up there. And the diet was not relieving that stiffness, only the inflamation. And it did seem to get worse, but I think it was there all the time, but only because the other pain was now gone did I notice it. My chiropractor and massage therapist always commented on my upper body stiffness, but I did not want to think about it, because I was more concerned with my sacrum, and not being able to walk, etc.

I am very excited to say that in the past 2 weeks, I have had amazing relief from the stiffness, because I have started swimming every day and taking water fitness classes. I am not 100% free, but am very hopefull at this point, and life is bearable now, I am sleeping so much better. I can't say enough about the swimming and wish everyone could give it a try. I am not on any meds! That really reduces my stress level! So things are really looking good for me.

I am not real interested in eating starch right now. I accidentially had some, and it sent me right back to the screaming pain and inflamation, which lasted 2 days. I am learning to live without it, and getting a little creative in the kitchen. I do love food still!