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Joined: Apr 2015
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miniowl Offline OP
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Curious if anyone has any thoughts on this:

After being diagnosed a couple months ago, I went to a nutritionist to get some testing done in order to find out what's causing my leaky gut and triggering AS. My tests came back yesterday and I do not have a Klebsiella overgrowth, but a Citrobacter overgrowth.

Regardless of which bug it is, I do feel much better having cut out starch and sugar (I've been NSD for about 2 months now.) My nutritionist is great and I really want to trust her, but part of the diet plan she recommends includes things like cashews and protein powders with starch. I have been avoiding these like they are poison and I'm very wary about trying them again, especially since I feel like I'm just starting to get a semi-decent handle on NSD. She understands and supports no grains, but thinks I'm being too strict by avoiding starchy supplements and certain vegetables.

In other people's experience, would you say it's wiser to listen to my instincts or try her diet? I suppose I can experiment and just stop her recommendations if they cause problems, but I'm just curious if anyone has ever found themselves in a similar situation. I'm also curious if anyone else has found out that they have AS/gut issues that were caused by bugs other than klebsiella.

Last edited by miniowl; 05/31/15 04:04 PM.
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Warrior_AS_Kicker
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Your nutritionist may have the right intentions but I'm pretty sure she doesn't truly know spondy the way you or others on this forum do. Her insistence to push powders with starch would be a major red flag to me and I'd pretty much end the relationship there.

If you canvas the multitude of experiences on the NSD and diet-related forum, you'll find out that everyone's individual case is unique. The approach she is advocating may have worked for her or is what her school taught her, but I'm willing to hazard a bet that they don't have a whole lot of experience dealing with AS specifically.

It's up to you to roll the dice and try starchy supplements, cashews, and some of the other vegetables she insists. In my case, I did enough experimenting to know that I'm very sensitive. The tricky case is when I introduce "fringe" starches or hidden starches into the diet. Sometimes the symptoms don't present themselves clearly initially and weeks later after a slowly insidious progression to joint pain, I realize that what I added was problematic. It's really tricky.

As someone who dropped all starch and sugar for years, my counsel for you is to make sure you eating enough non-starchy carbs (e.g. broccoli, kale, spinach, baby bok choy, chard, etc.) and enough fat. (Note, after a 4 year sugar ban, I have added some sugar back in my diet - lemons in some cooking, and some berries whenever they are in season.) I don't think there's a universally perfect diet out there because everyone's situation is different. The rules of thumb that I think are closest to being universal are 1) no processed foods and 2) limit sugar.

Lastly, I've found that you really don't need crazy or exotic supplements to feel good - just a very good diet. So anytime someone pushes some type of supplement, I tend to look at it with caution. Again, that's what I found from my experience and it can certainly differ from you and others out there.

Just my two cents.

Good luck with whatever path you take!


"But I also have to say, for the umpty-umpth time, that life isn't fair. It's just fairer than death, that's all." -- from William Goldman's _Princess Bride_
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miniowl Offline OP
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Thanks for the input! All very good points, especially about the slow onset of pain. I was feeling great after eating the same 5-7 things for a little over a week, then I had a wedding and another event to go to. I still ate NSD but had way more than my usual 5-7 foods. Something in there must have not been okay because yesterday and today I feel the pain creeping back. Good reminder that I'm probably no where near a point where starch is safe.

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AS Czar
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Hi, miniowl:

Regret there are so many who suffer from a near-total misunderstanding of AS and this germ: It does not take an "overgrowth" to cause AS and in fact even an abnormally low population can cause severe AS. Based upon the wrong (key) assumptions, there is very little that such a person--no matter how smart or pure their intentions--is really trustworthy about regarding AS in general and diet, specifically.

Health is just too important to jeopardize in the hands of 1) People with no real experience, 2) People with no vested interest in the outcome, and especially 3) People with such a demonstrated ignorance about AS.

So I would not endorse the opinions of this nutritionist; listen to Your instincts.

HEALTH,
John

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miniowl Offline OP
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Thank you both. I saw her again yesterday and stood my ground about the starch. She still thinks I'm being too careful but she ended up being very willing to work with me on my terms. She also recommended that I up the amount of fish oil and borage that I was taking and spread it out more evenly throughout the day. It's only been about 24 hours but so far I feel really good! Thanks again for the encouragement!

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I saw some nutritionist... they pushed some products they sold. I never purchased them.

I know what sets me off and what I can handle.

Tim


AS may win some battles, but I will win the war.

KONK - Keep ON Kicking

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