Kickas.org Forums Treatments, Drugs and Alternatives NSD and diet-related; Newb introduction, questions, and concerns

Hey everybody,

I'd like to start out by saying how great it is to have found this forum. It truly is a wonderful thing.

Introduction:
I'm a 21 year old male college student, who just recently found out that I have AS. I've had back pain for years, but doctors/chiropractors just dismissed it as normal pain due to stress (HS football, physical labor, etc). None of my vertebrae have fused as of yet, but I have almost no ROM in any of my back/neck, and my neck has lost its natural curvature.

I've been on the NSD diet and sulfasalazine for about 2 months now, and I'm pretty sure I can see a difference. I have a pretty high pain tolerance (probably due to dealing with AS for years with no painkillers), so my pain never really got above 3/10, making it hard to guage a change. I am concerned that my ROM doesn't seem to be improving with stretches/excercises.

Here is what I've been eating:
tomatoes, bell peppers, radishes, grapes, oranges, cucumbers, carrots, green beans, pickles, peaches, plums, pears, brocolli, onions, strawberries, blueberries, blackberries, rasberries, lettuce, eggs, chicken, fish, steak, blanched almonds, vinegar, garlic, and juices (simply apple and simply orange)

Questions:
1. Do I just need to be patient for my ROM to improve, or am I possibly not cutting out enough starch?
2. Is there anything you find questionable in my diet?
3. I wish to start experimenting with making NSD breads soon... I have seen the threads on using coconut flour, but was wondering if anyone has tried flaxseed flour/meal? Is flax NSD?
4. How do you use iodine to test liquids, such as soup, drinks, fruits, etc? I've only really had clear results on bread/french fries/chips.

Any help would be greatly appreciated! I'm really looking forward to figuring this stuff out!

scubasteve

hi there,,
ive been on NSD for nearly 3 mos and in the same boat as you w/ you w/ no rom from neck to 'nanny'. ive experiences verrrry subtle relaxing of the muscles but still no rom. its been suggested to me to find a 'manual' physical therapist [pt] one who helps stretch your muscles for you using various techniques. i have fibromyalgia as well so sometimes i wonder if thats the culprit instead. keep stretching though!

imo there are some things in your diet that look questionable depending on where your from and how you prepare these things. you are familiar w/ the iodine but is it the colorless? i remember some folk had trouble w/ that.
the only things that look completely safe on your foods...
fish
chicken
steak
eggs
lettuce
broccoli [raw or short cooked]
onions [raw]

and are the meats packaged in a 'broth' or ingredients other than water?

i cannot eat onions cuz its an 'inulin' containing veg. i cant have ANY amount of vinegar. its worse than eating starch for me.

others w/ more experience and knowledge than me im sure will chime in. good luck :]

Hey Steve

I'm sure you'll get lots of advice on all your questions...

Firstly the ROM thing, do you have an exercise regime in place for this or PT like Sunny says? Diet is important but moving is IMPERATIVE - you'll notice the phrase "use it or lose it" here a lot for this reason.
There are stretching exercises you can do which include some for your neck - if you are experiencing loss of movement in any area of your body, you must make sure you work on it.

Ok iodine
To test liquids or dark food you can mix with a little milk, because it is starch free (so will not interfer with results) and it is light in colour so you can see the results of what you are testing more clearly.
Sometimes results happen immediately, so happen over a bit more time.

Finally Diet
It really depends how strict you want to be.
If you are being very strict, then these foods from your list could cause a problem...

Tomatos (if they are tinned, puree or a shop bought sauce)
Radishes (I have had mixed results on these)
Cucumber (the seeds in the middle can be troublesome Kurumi told me)
Carrots (can't remember under what circumstances - maybe jucing, cooking and grating - will check this)
Green beans (no beans or pulses are safe)
Fruit all needs to be ripe when picked
Onions (if caramalised)
Apple juice (might be dodgey... can't remember why - will check this too)

Golden rule (as Kiwi would say) test with iodine!

Had to type this in a rush, will pop back on again later if I think of anything else.

I have got out of my flare with the diet - it started in Jan/Feb and has just this last week tailed off. It's well worth the effort. I so hope it has great results for you. If you have no permanent damage yet, you stand a really good chance of kicking your AS into remission with diet and exercise, good luck!

Take care,
Tink

Btw which film does scubasteve come from? It's driving me nuts cos I can't rememeber.... aarrggghhh
Great name though!

I concur with Sunnypower's comments about your food list, including the caveat about onions not being good for me. I'll add one more that egg whites are a common food sensitivity among people with compromised gut function, which turns out to be possibly all of us with AS, even those of us who don't recognize digestive symptoms. If you do have digestive symptoms, that makes food sensitivities even more likely...

Basically you've got a low-starch diet right now rather than no-starch, but low-starch keeps some people mostly flare-free (especially if they start before too much damage from NSAIDs, which it sounds like you've done).

If you want to try for better, best strategy seems to be an elimination diet that starts with the small list of "really REALLY likely to be safe" foods for a week or so and then one by one introduces other things that are likely ok. Most people do not get away with carrots or green beans (at least until they've been in remission for a good while), so put those off until quite a bit later. Orange juice normally has a little starch in it, as do oranges unless you somehow avoid eating all that white stuff. I think fresh spinach is another good vegetable, either raw or lightly wilted (not cooked to death). Don't be complacent about testing things like cucumber and broccoli even if you eat it raw or lightly cooked, because some people have run across the occasional starchy RAW broccoli. Grapes should be green not red, because the nutritional data shows red grapes tend to have starch in the skin...

Flaxseed looks like it might vary by brand:

http://caloriecount.about.com/calories-flax-plus-brown-flaxseed-meal-i89566

5g total carbs - 4g fiber - 0g sugar = 1g starch per 2T

http://www.bobsredmill.com/flaxseed-meal.html

4g total carbs - 4g fiber = 0g starch!!!

Thanks for bringing that up, I want to look into that for myself -- good starch-free sources of fiber are so hard to find!

Also note that coconut flour seems to vary in starch content, for instance Bob's Red Mill coconut flour is low-starch, NOT no-starch:

http://www.bobsredmill.com/organic-coconut-flour-mtx6135.html

8g total carbs - 5g fiber - 1g sugar = 2g starch per 2T

I have not found a starch-free coconut flour in the area where I live.

Sorry SJLC but I wholeheartedly disagree with you on this one. If the only ingredient is pure coconut and the flour passes the iodine test then it is completely safe and definately NO starch. You can't always trust the nutrician panel on products as these are generally estimates. You can trust iodine tho as it's a chemical reaction and will show up even small amounts of starch.

My hubby Jon is VERY sensitive to starch to the point even the smallest amount will cause a reaction etc and he is fine with coconut flour. We buy Niulife Coconut Flour and using your system it says:

Total Carbs per 100g: 64.7g
Of which Sugars = 7.9g
And Fibre = 38.5g
Which would supposedly leave starch as 18.3g

There is NO WAY in hell Jon would be able to eat something that has 18% starch! But he eats coconut flour most day with NO problem.

So I think you are mistaken about the coconut flour. I would hate to see newbies miss out on using it due to fear it is starchy as it's a valuable addition to the diet esp for those with weight loss concerns. And it's also much safer than almond flour in my experience.

All the best.

Hi scubasteve, you've had some great advice already but I'll add my 2 cents anyway.



Yes, 2 months on the diet is not enough to expect dramatic improvement. It's a gradual process for most altho you will hear the odd miracle case of someone feeling drastically better within a couple of weeks. I'll give you an example with my husband Jon. When he started the diet one of his bad symptoms was a severely swollen and stiff and painful knee. Within a week on the diet he noticed a decrease in swelling on the knee but it was still stiff and still very painful. Over a period of about 3 months the swelling went down but the pain and stiffness remained then gradually improved over another few months. So your ROM will return gradually. You need to be looking 6 months to a year in advance not weeks for significant improvement. You didn't get in such a bad state in a matter of weeks and neither will you improve that quickly either.



It looks very good overall. Things that I would be wary of would be tomatoes, radishes, carrots, green beans, any upripe untested fruit and garlic. Suggest iodine testing all of these.



I've not had any luck making anything resembling bread using coconut flour or almond flour unfortunately. They all turn out too cakey. But you can make other baked goods that are great like pancakes, muffins, cakes, cookies etc.

Haven't tried or tested flaxseed flour so not sure if that's OK or not. I guess you'll have to buy some and test it.





You've had some good suggestions for this esp mixing dark liquids with milk. Fruit is easy - just cut it open and drop the iodine on. Good idea to test several areas eg near the seeds (if any), near the outer skin etc as different parts may be more starchy. Fruit can be tricky as often picked under-ripe and cold stored so the starch it contains doesn't get a chance to ripen into harmless fructose.

All the best, I hope you continue to improve over the coming months. Your diet really does look pretty good as it doesn't look like you are eating any processed foods which often have sneaky starches added. If you buy something just check the ingreds for thickeners with a number next to it in the 1400 range (eg 1442 is a common modified starch added to sauces).

Actually this is rather encouraging. My last theory was that my local coconut flour was inferior to the stuff you have in NZ, and your stats indicate that's not the case. This is one theory I'm happy to have blown away by evidence.

Now I have 2 new theories, first of which is in agreement with yours

* all the coconut-flour manufacturers are putting inaccurate estimates for nutrition data instead of doing accurate measurements

* any starch starch in coconut flour is present in a non-dangerous form, just like Sinclair mentioned certain vegetables that technically have starch -- but it is locked up in cellulose unless you cook them

The good thing is that the end result is the same, and I'm going to give coconut flour a try. Preferably before I get my allergy test done, so it can check for coconut allergies (I know a couple people who are allergic to coconut).

One more thing Kiwi (I hope you're not getting too frustrated with me) -- could you provide more details about iodine test accuracy? Although it doesn't matter with respect to the coconut flour, it definitely matters to me when deciding whether to trust a particular piece of fruit or vegetable. I'm very sensitive right now, because the amount of starch from taking a wrong pill or two means trouble.

I've never seen anything quantitative about the accuracy or precision of a home-brew iodine test. Professionals use 0.3% starch solution, but that is ideal conditions where the starch is thoroughly dissolved in water. I'm pretty sure we don't always get that kind of accuracy in more complicated situations where the starch is embedded in solid or goopy foods.

Being the experimental sort, I'm tempted to do a rough assessment of the home iodine test accuracy myself, but clearly that won't work if the posted nutrition data is too inaccurate (otherwise I would find foods that were labeled with 2%, 1%, 0.5% starch, etc and see how clearly they reacted).

Hiya, I think you may be onto something with your 2 theories on the flour

There have been a few people who have felt they've reacted to coconut flour. I guess it's hard to be sure if it's the flour though as so many other things are added to baking recipes. From memory, I think the people in question felt they had a candida problem and so suspected either the natural sugar content of the coconut and/or the white sugar or honey or fruit also included in the recipe they were using.

I certainly hope this isn't the case for you and that you don't turn out to have a coconut allergy - that would be a bummer!

To be honest I'm not 100% sure on the accuracy of iodine testing. I have had it said to be on previous occassions that the iodine test is not quantitive ie it will show just as black for something that's 50% starch as something thats 1%. However, I haven't found this to be the case personally. Perhaps it's something to do with the type of starch in the food being tested - amylose or amylopectin.

All I know is that I don't trust "starch content lists" of any kind. They can be unreliable esp with vegetables. Eg, on one list I read that cooked pumpkin should have 0.1% starch which would make it totally fine on NSD. So I bought some and cooked it and it went black black black. So black it was nearly blue - like when you test cooked potato! Then I also read that cooked brocolli would have 0.1% starch. Cooked and tested it and absolutely no change in the iodine and brocolli is now a staple in Jon's diet. So lists cannot be trusted!

Hello Steve

the first thing to say is that damage to spine and joints cannot be undone. Diet can prevent further inflammation and consequent damage, but it doesn't do miracles. However stretching and ROM exercises will maximise your potential for mobility. My spine has been fused since '77 but I still do the exercices every day; they help me walk better, turn my body to look to the side when I am driving etc. We have to make the best of what mobility we have.