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Joined: Aug 2011
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Charlie & Claire....wonderful, wonderful news. So very happy and excited for you. I so badly want to write a success story, but I promised myself I am going to wait a year into the diet. 9 months into it, it has been like winning the lottery for sure.

YAY FOR NSD!


Lauren S.
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Hi all, this is my very first post! I have read on the kickas site before. I don't actually know how to even start a new thread yet!

I am so pleased to see this thread though. I have been low starch for 2 and a half years and although I can't say I'm pain free, I am so much better than I was.

So much so, I have started to collect good, low starch recipes on my blog. I get nothing out of it, I make no money, I purely want to spread a little low starch love for folks who might not be aware of the difference it might make.

I also talk about my AS journey, I will post the link here, I hope that is ok and appropriate, if anyone would like to direct me to a better place to share recipes, I will happily move along! LOL

Many Thanks and nice to meet y'all

Ria smile

http://cigarettesandmeltedchocolate.wordpress.com/

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Thanks for your post, very informative. I have been a relatively lucky ASee as my mother was very progressive in the very early stages (violent AS attack to major larger joints at 15) and I now am mostly fine but get attacks every now and then when I get too complacent with my diet. I have decided to re-vamp my outlook and try the same advice I gave a friend on quitting tobacco, go running. all other sports I can do as I generally have a good pain level maintained, but running has always been a movement where I can notice much finer levels of pain. Just as I advised my friend to run every morning and so notice the improvement in lung operation, I have decided to run every morning, not long runs but enough to notice on a micro level how I am feeling which hopefully will inspire me to keep to a good diet: I dislike being physically impaired. What is your take on running? I have had some concerns regarding it's effect on my knees etc. do you notice any inflammation anywhere else aside from SI? I have not since my first ever attack at 15, now it is all alternating from left to right SI and obviously occasional uvitis and fatigue.
Josh

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Hi Everyone!

Just wanted to pop in on my one year anniversary and tell you all I AM DOING FANTASTIC!!!! Thank God for the NSD. I'm telling you, if you have doubts, please, please try it. You will need to tweak it to fit your individual needs; it is not an easy path to follow at all. But with persistence (and a touch of stubborness) it took almost the entire year to get my diet to fit where I want to be pain-level wise, which is ZERO pain, and right now I am in zero-pain! And have been in pain level 3-0 in the past 6 months (mostly 1-none).

I'm going to try to make this short & sweet but a little background for the newbies out there: I suffered undiagnosed for almost 4 years, going from doctor to doctor, to pill to pill, to chiropracters, PT, massage, you name it, I tried it. My pain was the kind that had me limping severely for roughly 9 months out of the year, couldn't get out of bed, couldn't dress myself, couldn't use the bathroom without assistance, couldn't get in and out of the car without extreme pain, etc. Basically I didn't have a life. What once was filled with horsebackriding, running, playing sports, games, snowboarding, just plain WALKING and many many more things I enjoyed doing came to a complete STOP. It was terrible, especially for someone whose symptoms started at 22 and had no clue what the problem was. I was starting to think I was crazy and in my deepest of despair, actually had thoughts of taking my life several times.

Finally, I found a doc with a BRAIN and he referred me to a rheumy. Of course, he gave me the usual two options of NSAIDS or Immunosuppresents and handed me a couple brochures and basically in a way said sucks to be you, here's some crappy options, good luck with the rest of your life. Well, I wasn't having that. I knew there had to be an underlying cause to this stupid disorder. SO, I started on my research. I probably put at least 500 hours researching on the internet including this website, and sickopportunity.com. I started the diet right about this time last year, and I am now a changed person. Not only do I have my life back, I seriously feel like a brand new person, inside and out. I have lost 30 lbs, look great, feel great, and am back to doing the things I used to. In fact, I have ALWAYS wanted to try wakeboarding but in the past the thought was laughable. This past weekend I did, and I got up out of the water! I have the itch, and I think I may have a brand new hobby!

I am so excited and my only wish now is that any of you that are in the position I used to be can get some hope from my story. My best advice is to keep a journal (I kept on in my iphone in the calendar feature), keep a CLOSE monitor on how you feel every time after you eat something, and STICK WITH IT! I really believe that the first 6 months was tweaking my diet, and the next 6 months is your body adjusting and healing from the terror AS put on it. I am not the expert, but if you have any questions, you may PM me and I'll give you my email address.

THANK YOU KICKAS! YOU SAVED MY LIFE!

~Lauren

Last edited by lar84; 08/22/12 01:03 PM.

Lauren S.
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This is only my third posts here on kickas.org and wanting to share my story, so far.

I was diagnosed with AS just a couple weeks ago. I have not been to a rheumy yet but have an appointment next March. It is a long wait but better than nothing at all; considering my GP told me she would treat it and I did not need a rheumy. I am only taking Ibuprofen on a regular basis. I am trying to self-treat myself but I am getting worse. I have been doing a lot of research and found kickas.org a few months ago. I am thinking that I have had AS for a lot longer than I had previously thought.

Since last week, I have been on a VERY STRICT NSD. I said in a previous discussion on this website, that I have been on a NSD diet, before. This ends up being not true. I was nowhere near being starch free till last week. I have found that everything has starch and I am having trouble finding things to eat. I now have a journal and a bottle of iodine to battle the evil starch villain. I am not seeing any improvements and only getting worse. I am losing more weight which is bad because I do not need to lose much more. I am pretty lucky because my wife is in the battle with me. She has told me that she does not want me to go into this alone. She has been making all kinds of stuff. One of my problems is that even though I am starch free there are foods that are still making me sick. I swear there is no starch but I still get sick. When I say sick, I mean that I get diarrhea and just have an overall feeling of awfulness.

I will keep fighting and refuse to give up....

Last edited by Key; 10/09/12 03:51 PM.
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I have not been diagnosed with AS but just tested positive for HLA B27 2 weeks ago. I have been battling iritis for about 5 weeks, for the first time. The opthalmologist tried to step me down from every 2 hours to 4 times a day on the prednisolone drops and I had a bad re-flare which was not getting better as fast as he expected. He gave me one more week to be almost 100% inflammation-free or it was time for a shot in the eye. But every morning I would wake up with redness and a little bit of pain. Finally I did some research on my own and found this site. Upon reading that a low starch diet had helped so many people (and that so many had the iritis come back without the diet!) I decided to give it a try. I had done low carb about 10 years ago and lost 50 pounds so I had a good idea of what I could and could not eat for the most part.

2 days after cutting the starch/carbs my eye no longer was red or painful - and it was the day of my dreaded appointment. The doctor was amazed that after every other checkup being a "disappointment" this one suddenly was great - the swelling was almost 100% gone. So we are now starting the stepdown regime for the drops.

I am so thankful for finding this website!!

Last edited by Kelrhys; 11/08/12 04:12 AM.
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I know itís early days, but I just wanted the share this.

My husband has been recently diagnosed with AS but thankfully it is not very advanced and that's how we want it to stay. He's nearly 50 now. He used to get a lot of night sweats when he was in his late 20's/ early 30's, over a period of couple of years. This has since been linked to his condition. Since that time he had a lot of lumbar pain which we thought was mechanical injury due to sports. He found sitting very uncomfortable so travel was difficult.

He has had Chiro for many years to free up his lumbar and pelvis (sacro iliac) area . Slowly his back pain got better over the years. When pain got worse he would go to the chiro for a very gentle adjustment ( he has experienced some very forceful chiroís who did not help at all), with some low grade pain being present all the time. This past year he has also had trouble with his eye on and off.

About 6 months ago his chiro suggested he saw a Kinesiologist regarding nutrition. She put him on some supplements and suggested dietary changes very similar to low starch diets, but said not to get to burdened down with it.

Recently, after a gap of over 15 years around Christmas he had 3 night sweats in close proximity indicating a flare up. He was also feeling very tired which we wondered was linked to good living of Christmas food; so we cut down on processed sugary treats and started doing wheat free.

At that point I contacted the forum and also gleaned some very helpful dietary information. The result was us trying to reduce starch in general also. No wheat or grains, rice or potato, no lactose.

I have started to do more home cooking and making food which is safe to eat, and also allowing plenty of suitable foods for snacks.

The changes we have made so far Ö which are not as strict as they could be so there is still some scope, have meant that he now has no low grade pain in his sacro iliac area for 3 consecutive days.

This is new and must be the result of the dietary change which has occurred slowly since 6 months ago and more recently since has been taken the diet more seriously !!

Thanks to Kickas for the support and information that has made a difference so far.

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Hello all. I posted my NSD 'success story' about a year ago on this thread. Things are still going great--better than ever.

I am posting again because I wrote an essay based on my experience that is all about AS and NSD. It was published in The Point Magazine last January, and they have just now made the full text available for free:

http://www.thepointmag.com/2012/essays/plea-human-food

I'm trying to spread the word about the diet as best I can, so if anyone out there has a way of getting this link to more people--please help! The essay is meant as a kind of layman's introduction to autoimmunity and diet therapy. Some of you on this site helped me with the technical side.

Thanks,
Charlie

ps: if you want to reply, I'm also posting to the general forum so as not to clutter the sticky success story thread.

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Charlie,

Ha ha, I found you again. I saw your article earlier somewhere else and have already shared in several areas and was about to post it here for you but look, you are already here! Small little A.S. world isn't it.

Last edited by Pea; 05/11/13 04:30 AM.

Pea
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Hello My name is Evan I am 21 year old from Ottawa Canada. Here is an e-mail I sent to my AnkSpon buddy in Australia. It is a good summary of how my AS went into remission and how I got off all nsaids and other prescription drugs that help short term but make things worse long term. Have a wee read if you'd like and feel free to ask questions about my experience.

Take care,
Evan

--------------------------------------------
G'day Geoff

How are things? Did you end up giving CMO[Cetyl Myristoleate] a try? Any results?

I reduced my LDN [low dose neltrexon] to 1.5 mg from 4.5 mg the last time I was talking to you and still experienced some brain fog..dizzy..anxious symptoms so I went off it again. Right after I quit the LDN I started CMO along side a fairly good dose of Glucosamine Sulfate and a couple other supplements. I seemed to experience some relief for about a month. I got fed up again and started reading into nutrition a lot more, I already knew low starch diet gave some relief. Next to go was all gluten and sugars...more relief, then all night shade veggies...more relief.

Somewhere in my readings I came across someone talking about water only fasting for disease especially autoimmune. Talked to my doctor about it and he thought I was bat [*bleep*] crazy and to be honest i thought it was a little nuts too. I then came across a book called Fasting and Eating for Health: A Medical Doctor's Program for Conquering Disease by Dr. Fuhrman (he's chummy with dr Oz and dr Weil). This book really changed my view on western med.. I then started looking for clinics that will do a supervised water only fast, I only found one in north america called True North Health Centre located in Santa Rosa California and ran by Dr. Goldhamer(who actually interned with a doctor who supervised fasts in Australia 30 years ago).

So after many over the phone conversations with True North I took a wee trip to California to Check It out. I ended up staying a month doing a two day pre fast (fruit and veg only) then a 14 day water only Fast followed by a re-feed [day of fresh juice, a day of raw veg and fruit, a day of raw and steamed veg, and finally a week of a very strict vegan diet with no added salt oils and sugars (even no honey, maple syrup, olive oil, gluten ex..)].

I'm happy to say the results were amazing ..SI joints released, thought they were fused. shoulder healed, joint mobility increased, muscles relaxed, irritable bowel and colitis symptoms disappeared brain fog gone, depression gone, mood swings gone...the list goes on. Another strange thing that happened was old injuries from the rugby and football days that didn't bother me started to hurt intensely for about 5 days then went away..almost like my body was healing them..I have read this can happen. Also I am off all over the counter and prescription Drugs!

As you can see I am doing well sticking to healthy eating (not completely vegan but try to eat naturally fed meat or a lot less animal protein.. and no oil salt or sugar) reduced alcohol intake. Also I have started a regular exercise routine mostly just cardio right now..haven't been able to jog in a couple years now..as each day goes by i am able to run or bike longer and longer.

Thanks again for all your help with AS..I think I have found something that will work for me (at least for now) and hopefully be able to stay off those crazy drugs.

Water fasting is not for everyone and may sound crazy at first, as it did to me, but It actually works and in a short period.

Cheers,

Evan

----------------------------------------------------
So there is a little brief summary of my experience. It is recommended that one should be medically supervised if fasting longer than 5 days and one should not be on any medicine including natural supplements while fasting.

Feel Free to Email me with any questions at evan.donnelly@hotmail.com just please make sure you put ANKSPON or something related in subject bar..or can msg me on here.

Go kick some AS

Ev

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