Kickas.org Forums Treatments, Drugs and Alternatives NSD and diet-related; NSD Questions and Help

Hi Everyone

I have had AS since ~25 years old. Not diagnosed til I was ~37 by a very industrious GP who was able to think that my sacrum pain might be more than overuse. On Enbrel til 44 (current age) however I will not be going back onto TNF drugs. My case seems to be fairly mild however I still went on Enbrel and it allowed me to forget AS even existed. While I spent most of my years bodybuilding, the Enbrel allowed me to go back to playing Ice Hockey. Without it, I am concerned about playing again. Luckily I get to coach my son which I can continue either way. Mid May I got sick with a cough and cold. Thought it was no big deal but the cough persisted. After many tests I either had a virus passing through, (GP and Rheumy opinion) or a fungal infection that is fairly common in AZ (Pulmonologist opinion). Since my labs show I don't have the fungal infection and my mom had something similar right before I got it there is some doubt on the fungal infection. That said I am still taking anti fungal meds for six months to be certain. While Enbrel is great, going forward I would rather use diet to control my AS. I have been off Enbrel for 2 months now and so far have not had any AS symptoms tho my Rheumy thinks they will slowly come back. So its diet time and Im hoping the folks here can answer some of my questions.

I read the Ebringer info and it seems his initial success was with a more low starch than no starch diet. Do many have success going low vs No. I don't want to start a debate but I want to give this the best shot of working.

I already follow a Paleo diet with some cheat meals. I will have to tighten that up and remove any starchy treats from my cheat days. Sucks to think there are foods I will never have again but not that big of a deal. I will do Iodine testing however in Ebringer's info I saw it mentioned that all liquids are fine. I do a lot of protein shakes which I am guessing will test starchy. Are there any brands that members use that are not starchy?

Iodine test. I get the concept but if I am testing a liquid do I just put a drop on top of a protein shake and see if it turns? For seasoned meats do I just drop on top as well or cut open? I use a lot of herbs and spices, how do you test them?

Supplements...I know they may be starchy. I take vitamin C and the tablet looks starchy....do you cut them open and drop iodine to test? I would assume capsules and fish oil would be non starchy. Also this anti fungal pill I take for 5 more months looks like it would be starchy. I have to take it so I cant get around that.....so even if I go strict NSD..i will have that little starch bomb once a day....will that derail my efforts completely?

I am trying to decide if I start LSD and then go to NSD if I don't feel I am making progress. If I did LSD do you just eat all starches but in limited quantities? I understand that for some only strict NSD works. Does LSD work for some or do most end up NSD?

I realize this is long and that I asked a lot. I really appreciate any help anyone can offer and I am happy to email as well if that is an easier way.

Thanks
Chris

If you have no symptoms I would let well enough alone and eat a healthy diet without too much concern about starch. My understanding is that gut bacteria help break down starch so if you have no problems you may have a good gut. Maybe shifting your food would shift your bacteria and who knows if that would be an improvement. If I were you I'd skip gluten, sugar and processed food in general but not worry about healthy starches unless you start to experience symptoms. Just my opinion! Hope you continue to feel well!

I was an Ebringer patient and his approach worked for me - when I eliminated pasta, bread, potatoes, cake etc as he advised I was able to come off medication. No testing with iodine so LSD, not NSD. You might be fortunate and have the same success with this simple approach. If not then try to be more rigorous.

Hello, Chris:

We have problems with STARCH, not gluten and not sugar!

Ebringer's LSD forbids his "four major poisons:" Bread, cake, pasta, and potatoes. I would add fried foods, breaded foods, and certain fruits to this.

MOST supplements do not contain starch but do use portions of starches like maltodextrin, which may indicate with iodine, but should not cause any problem in the amounts we take. Labels are usually correct, but I do not trust anything from GNC--not by the label and certainly not the active ingredients actually being there!

The purpose of LSD is to get comfortable with and recognize which foods are provocative, long-term (it is a STATISTICAL thing; ONE meal will not AS make and we cannot test and judge based upon a few meals with or without starch).

Personally, I have reacted to protein powder and do not trust nutrient powder--anything turned into a flour is suspect. Get Carol Sinclair's book and also Andrea Wychoff's which has great bread substitute recipes.

Carol Sinclair's NSD is much more strict than Ebringer's, but it may be necessary if Your AS should progress. If You are an "indicator" (ESR tracks disease activity), it would be instructive to get ESR test before starting diet and then at various intervals along the way.

The thing is not to be too obsessed--starches will not kill You, but only make You wish You had died!

Are salad dressings "liquids?" I was once attacked by "bleu cheese" dressing that was adulterated with starch. It was a bad flare, but fasting and antibiotics took care of it quickly.

The protein powder I reacted to was "soya isolate," I do not know about casein or other powders. I still lift but not as much or as often--I found out that NIACIN exacerbates gout, which I am battling now! The power lifters I used to work out with used to take 5g niacin daily and more-- but it was the steroids that killed off most of them. They all knew that STARCH was just empty calories and totally unnecessary in the diet--especially before their competitions!

Hope You remain symptom-free, but if the monster rears its ugly head at least You will know what to do,

HEALTH,
John

OK speaking as someone who has gone from ultra-starch-sensitive to being in remission & starch tolerant, here are my personal observations & recommendations. I'm assuming here that you are more likely, given your situation, to choose the low starch route:

* eat cultured foods - such as natto, kimchi, sauerkraut, kombucha etc. In fact natto & kimchi are what seemed to bring me into remission as best as I can tell. Edit: Ted used to be a frequent visitor here and I believe he attributed his remission to homemade sauerkraut - not so different to kimchi methinks.

[ and if going the low starch route: .. ]

* avoid deep fried starches - these are the worst. I would go so far as to also recommend restricting processed mixtures of starch and fat. For instance certain kinds of bread have a lot of oil mixed in and I avoid those.

* prefer less refined starches - the more processed a starch is the more likely it is to encourage poor and unhealthy gut flora. Unrefined foods have the starches locked away more in fibres that encourage friendlier flora. So then, if you are going to eat starch then prefer whole foods like sweet potato, corn cobs, oats.. in place of highly processed & manufactured foods.

* avoid cheese - for some weird reason this was able to bring back my starch sensitivity, but only for a day or two. Maybe the friendly flora in my gut that is keeping my AS at bay didn't like the yeast or the fat. I just don't know why, but it happened more than once. Would be interested to hear if any other people using a low starch approach have a similar reaction.


>> I already follow a Paleo diet with some cheat meals.

If your AS starts to get away on you I recommend a 3 day fruit fast to push the reset button and turn off the inflammation. Then you can introduce any suspect foods one at a time. On the 3 day fruit fast I consume: non starchy fruits, water, juice, tea. By the 3rd day I am inevitably free from AS inflammation.


>> i will have that little starch bomb once a day....will that derail my efforts completely?

Honestly that depends on your system. If you are super sensitive like I used to be (not that long ago) then yes even such a small amount would cause a reaction. Fortunately it seems clear that you are nowhere near that sensitive.

>> I do a lot of protein shakes which I am guessing will test starchy.

Very likely. I'm perhaps even more concerned about the powdered milk they add.. I never drink these anymore as they trigger my iritis.

+ yep everything dragon said

Thanks Everyone for the replies...I appreciate the help
So I think I will go LSD first.....
Bilko, so I would eliminate the items you mention however, can rice still be consumed maybe just not on a daily basis?
Thanks John, so I will test my protein poweder once mixed into shake format and see if it comes up starchy....if it does Im going to have to make a switch....I did just have blood done but Rheumy said my ESR was normal....did not give me a number tho....but I've never really showed an elevated ESR....I know that is not a predictor of disease severity.....but im hoping that means that im not too bad off and LSD will work nicely...
Thanks Zark....I love sauerkraut....im assuming the store bought kind is not what you are referring to....So do I have to make it myself or is there a resource to get it? How much should I consume daily? Love Kimchi but have no idea how to make or where I could get it....
I like the idea of a fruit fast....is there a list of starchy fruits? I know bananas are but not what others are.....how is your energy on the fasting days...do you go to work, to the gym?
I don't seem to react to dairly (cheese) in low amounts but Im going to cut dairy for awhile anyway.....
Im going to get the books John Mentioned as well.

Thanks Again

No rice. I had lots before the diet. Lots of curries.

>> can rice still be consumed maybe just not on a daily basis?

Depends on your body.. before I went into remission even a little rice would cause the symptoms to come back in full force. For me this lasted three days. That means a meal of rice every two days or so would've left me in pain continually. So at that point low starch was totally inappropriate for me.

>> I have been off Enbrel for 2 months now and so far have not had any AS
>> symptoms tho my Rheumy thinks they will slowly come back

This is the reason I suspect you would want to take the low starch route since it is difficult to maintain a strict no starch diet without the "incentive" of the terrible pain and inflammation. So I figured the best for you right now might be Low Starch Diet since you are more likely to be able to stick to that..?. That's also why I'm trying to recommend more preventative strategies with the cultured foods etc.

I've also heard of people using Paleo Auto-Immune Protocol (?) I had a peek and it looks so very similar to the No Starch Diet except they seem to allow sweet-potato.

>> I love sauerkraut....im assuming the store bought kind is not what you are referring to

Actually I do buy mine from a health store, but it is a living one, rather than the pasteurised stuff you typically find everywhere. Kimchi seems to be very often in an unpasteurised and living state (probiotic) so that is perhaps an easier way to get it.

>> Love Kimchi but have no idea how to make or where I could get it....

Where I live most of the asian grocers stock it. Otherwise find a Korean friend and ask them where

>> is there a list of starchy fruits? I know bananas are but not what others are.....how is your energy on the fasting days...do you go to work, to the gym?

You can't work hard or go to the gym whilst on a fruit fast. You don't do anything strenuous or you could potentially faint. Otherwise my energy levels are actually greatly improved on a fruit fast, but maybe that is just me. My body and emotions feel better when it isn't overloaded with toxic flora / bad fermentation / inflammation.

The classic fruit fast is just red delicious apples and water / tea. But personally I like other fruit...

Which fruits are good: My fave ones are pears, grapes, mandarins. Add to that melons, apples, dried fruits, and berries.

Bad ones: Bananas, most stone fruits (apricot, peach, plum, etc)


>> I don't seem to react to dairly (cheese) in low amounts but Im going to cut dairy for awhile anyway.....

Yeh cheese was a weird one. It never caused me trouble whilst I was on the no starch diet. However when I went into remission then cheese seemed to keep bringing back starch sensitivity. Maybe it is just me? On the other hand something to watch out for... I do know that some on NSD struggle with soft cheeses though.