Kickas.org Forums Treatments, Drugs and Alternatives NSD and diet-related; Would love some advice and support!- new member

HI ALL,

I was recently diagnosed with AS and would love some support and advice from those of you that have been successful . I just did a one day fast and don't feel much better, but am trying to stay optimistic that the NSD will work for me. This can seem very overwhelming and I'm so glad to have joined this forum where I can connect to others who know how I feel and have been through what I'm going through!

Just wondering- how many of you react to the "fringe" foods such as garlic, asparagus, almonds, etc?

Also, I recently bought about $100 worth of supplements, only to find that a few of them have little bits of Maltodextrin or rice flour. I am having the same problem with finding Stevia, as most Stevia has Dextrose or Inulins in them.

Just wondering, should I completely cut out these supplements, even if they didn't turn black with the Iodine test?? Some of them stayed a brownish red, so the amount must be very small. The only thing I can't cut out is my Thyroid medication, which I need, and does have a tiny bit of starch (but didn't turn black- just brownish).

Also, I had seen in one of the forums that Dexrose is okay and doesn't feed Kleb, and that you need some carbs in order to rebuild your stomach wall. I am guessing my best source of carbs will be fruit, most of which should be okay as long as I iodine test it first, right? Does anyone have experience with this? Does anyone have a reaction to dextrose?

Any help, encouragement, advice, hope and support is greatly appreciated. I haven't started meds and would like to avoid them but am in severe pain with Sacroiliitis. I seems that many have had results very quickly, so I am trying to stay optimistic!!

Thanks!
Mandy

Hi Mandy,
Your young I would guess. Us older folks are too tired to use exclamation points at the end of the sentence.
Clue number two is your optimistic....
and number three is your curious, and that shows your wise beyond your years.
with AS you get " bonus" ailments, and there are many that are prone to show up because your just lucky.
The forums will benefit you a lot if you read enough posts.
and be sure to investigate others ailments here. Unfortunately most of them you will likely encounter.
It's at least comforting in knowing what is happening. It sometimes helps to describe your pain.
I don't know squat about diet, I just go by the eat it before it eats you rule.

Hi Mandy,

I know what you mean by the "overwhelming" feeling, and to come across this site and realize how many people are in the same boat. Sad and encouraging at the same time!

I flare from nuts and seeds in a big way. Peeves me to no end since I often crave nuts, and have tried to "re-introduce" them for the past 3.5 years

I stay completely away from onions of all kinds, they give me serious indigestion. They never used to, before the inflammatory symptoms took off... Same thing with nightshade veggies like peppers and tomatoes.

Many people seem to be able to re-introduce certain foods later on though. It's all about healing, and testing.

Make sure you get enough fat in your diet (lots of olive oil, coconut oil. Many people eat butter still. I cook all my meat in butter.) Fat will be your fuel now, rather than sugar.

Non-starchy fruit will certainly help keep you going too, but don't forget the fat!

Some thoughts on diet and inflammation:
http://www.spondymonster.com/the-as-protocol/


Keep reading and asking questions in this forum, it's well worth it.

/Kristine

Thanks you guys! It is so good to be connected to others who know how I feel. This disease is so tough.

I certainly hope I'm not sensitive to nuts... I love almond products.

Would you suggest to start really simple and just eat greens and meat for a few weeks?

Also, what is your experience with fruits? I tried to test an apple with iodine the other day and it turned dark brown at first, and then lightened to orange again. Same thing testing my rice protein powder (shouldn't have starch since it is pure protein but who knows)- turned dark red then changed back to orange. Weird!

Fruits seem to be a trigger for me. I think it could be the sugar causing an immune response but I don't have anything scientific to back that up.

I have been eating diet with lots of fresh raw foods (tons of produce) and quite a few nuts for the past 3 years, while also being low/no starch. I do great with the loads of fresh fruit and high quality raw nuts I consume. And I also like baking with almond flour.

But obviously my approach doesn't work for everyone! I actually feel best when I eat lots of fresh fruits, veggies, juices, smoothies, raw nut/coconut based treats, with a little wild caught seafood or pastured meats. But most days I am all plant based, and low/no starch.

For example yesterday. I had a raw chocolate/macadamia/date/spinach shake in the morning. Followed by a strawberry/walnut/fig shake. Then I spent the entire day foraging for wild huckleberries, thimbleberries, and salmonberries on little back roads to the coast. Ate 2 raw seed/carrot based "crackers" on the road. Then I had a dinner at a restaurant on the coast - rockfish crusted in hazelnuts with zucchini. And a vegan starch free chocolate cupcake when I got home. Pretty much my typical daily diet. And I LOVE it!

Best of luck in finding an approach that works well with your body!!

Wow.
Your typical food day sounds better than my typical pre NSD day!
Will definitely have to research how to cook some "NSD-legal" treats!

>> just did a one day fast and don't feel much better

For me, 24 hours after starch is when inflammation normally peaks, particularly so for grains. Pain starts to improve noticeably after 2 days, and on the 3rd day I am starting to feel normal again. So 3 days of very strict NSD is what it takes for me. But everyone is different.. some people take longer.

I started the NSD quite slowly, and it may be that during that time I built up my tolerance for foods that have a small amount of starch (such as vegetables and some unripe fruits). Cutting out grains was the first major hurdle for me.

>> Some of them stayed a brownish red

Iodine testing .. a red-brown colour indicates amylopectin instead of amylose. Glutinous rice flour is the most common source of amylopectin. I tolerate this pretty well - no pain, but fungal issues instead. Avoid this until you are pain free, and at that time you may want to give it a try. Supplements that turn black you will have to give away or chuck :-(

>> Dexrose

True dextrose is glucose.. honey, which is safe for AS, is actually made of almost half fructose and half glucose (dextrose). But it may be that some foods saying 'dextrose' really contain polydextrose that was incompletely broken down from starch. It might be ok, it might not. One thing you can say for sure is that if it says 'dextrose' in the ingredients then it aint quite natural..

Hey Kristine, great website !!

I'm pretty sensitive. So I cannot handle certain foods that others are OK with: asparagus, brussel sprouts, cauliflower, etc.


If you're in a lot of pain, it probably will not make a big difference to cut these out. For me, I started becoming super strict when my improvement plateaued. Think of NSD as an evolving path for you. Initially, you will hopefully benefit from removing the key starchy foods. Over time, you may elect to become more strict if you continue to seek complete asymptomatic bliss. There's a wide spectrum of experiences here. Depending on how far the disease has progressed, this may be harder for you to achieve.


Couple of points here...1) It's not a no carb diet, it's a no starch diet. You'll need carbs, just not the starchy ones. One of my biggest mistakes early on was not eating enough non-starchy carbs. 2a) Some people elect to cut sugar out too. This is not necessarily for direct management of spondy symptoms, but there's one theory out there that candidiasis contributes to leaky gut syndrome which contributes to spondylitis. You'll have to decide for yourself if that's a path you want to go down. I cut out all fruits for 4 years and reintroduced some last year. I don't have any problems with blueberries, blackberries, raspberries, and Concord grapes. While I love the convenience and taste of fruits, I've found that I prefer how I feel when I am completely sugar free. I also only eat my fruits when they are in season. 2b) If you cut out fruits (all sugars), make sure you get enough non-starchy carbs. Lots of them. You'll be shifting to a ketogenic diet (burning fats for energy as opposed to sugars) so you'll need to get the energy you need. 3) I _think_ I react to dextrose. I'm not 100% sure as previous reactions may have been attributed to other ingredients, but I just avoid it altogether now.


There is a wealth of knowledge here and lots of super awesome people. Please continue to post your experiences and questions as it benefits the community in general. Optimism is important! Just don't compare your progress to others. Everyone is different so your progress on a dietary path will likely be different as well. Best of luck!