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#462801 - 02/15/12 06:26 AM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
Kancie Offline
Third_Degree_AS_Kicker

Registered: 11/30/11
Posts: 256
Mrs. Zombie, that is beautiful! I am so very happy for you both! Keep at it!!!!
_________________________
Iritis first diagnosed in 1991, presently recurrent and steroid resistant.
Tested HLA B27 positive in 1996.
AS diagnosed October of 2011.

Putting most of my eggs in the NSD and exercise basket, using only TENS, massage, heat and ice, and NSAIDS (sparingly) for pain. Drops for iritis as flare necessitates. Looking back I feel I would have been diagnosed with AS years ago, if I had found a rheumy earlier than 2011.

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#463637 - 02/26/12 05:41 AM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
Johnjob Offline
New_Member

Registered: 07/13/11
Posts: 3
Loc: Beijing, China
I had the same experience like Leovix and need friend's advices.
_________________________
To see a World in a Grain of Sand
And a Heaven in a Wild Flower
Hold Infinity in the palm of your hand
And Eternity in an hour

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#464382 - 03/05/12 09:10 PM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
KiwiEmily Offline
Member

Registered: 03/05/12
Posts: 30
Loc: Auckland
Hi, I just registered today, this is my FIRST post!
I was only diagnosed with AS last week and it's still all very overwhelming for me. I am very interested in this diet and pleased to see all the success stories, it gives me hope.
I have just ordered Carol Sinclair's Low Starch book as a place to start. I hope soon I can post my success story here too.
_________________________
Diagnosed March 2012
First symptoms December 2011
31 years old
Determined to change my poison into medicine!
Runner, stamp collector, cat lover, cheese lover

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#467230 - 04/13/12 02:56 PM Re: Hi my name is Tim and I am a NSD success story [Re: hello]
pspondylitis Offline
Journeyman_AS_Kicker

Registered: 03/18/12
Posts: 122
Originally Posted By: hello
hi Tim,
Thanks for sharing your story. I am from Australia and find some of the foods very hard to find. Everything seems to have a starch in it. I guess I will have to make everything myself.
In australia we don't have the liquid iodine(I have been to numerous pharmacies and also health food stores) and I can not find it. Do you have any suggestions where I can get it from?

Thanks, Anna


Check Ebay, they have everything ! I bought my bottle from ebay, but i live in the UK.
_________________________
Age 52. Psoriatic spondylitis. HLA B27 negative. MRI negative.

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#467314 - 04/14/12 02:05 PM Re: Hi my name is Tim and I am a NSD success story [Re: pspondylitis]
Philsta Offline
Journeyman_AS_Kicker

Registered: 02/20/11
Posts: 128
Loc: Perth, Australia - Frankfurt, ...
Originally Posted By: hello
hi Tim,
Thanks for sharing your story. I am from Australia and find some of the foods very hard to find. Everything seems to have a starch in it. I guess I will have to make everything myself.
In australia we don't have the liquid iodine(I have been to numerous pharmacies and also health food stores) and I can not find it. Do you have any suggestions where I can get it from?

Thanks, Anna


I am Australian and I can assure you that we do have liquid iodine in Australia and you can get it at any pharmacy. Betadine is very common... it is exactly what you need.

Actually I am looking forward to moving back to Australia as it will make the low starch diet so much easier than it is here in Germany. Starch really is hidden in everything and all German meals seem to be coated in bread or served with a mass of potatoes.

Food is danm expensive in Australia but really fresh fruit and vegetables, meats and fish are so easy to find and are of extremely good quality. Start cooking with fresh ingredients and you should never have to worry about hidden starch.


Edited by Philsta (04/14/12 02:09 PM)

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#469683 - 05/15/12 07:11 PM Re: Hi my name is Tim and I am a NSD success story [Re: Dotyisle]
Farmer_K Offline
Member

Registered: 05/14/12
Posts: 30
Loc: Queensland, Australia
My husband has AS and we have successfully managed to REVERSE the damage to his spine through a starch-free diet while lowering his lactose consumption as well. You can find more out about it on my blog - www.farmerkskitchen.com (there is a section along the top called { K's Reboot }. I also list many starch-free recipes we have been eating along the way! Hope it helps smile
_________________________
My husband has had AS for nearly 14 years and almost unable to walk. Now he is completely pain-free since following a strict No Starch Diet.
My food blog (with NSD recipes): www.farmerkskitchen.com
My husbands AS story: http://thefacesofankylosingspondylitis.com/a-s-face-0271-kirk-vagg/

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#469692 - 05/15/12 08:02 PM Re: Hi my name is Tim and I am a NSD success story [Re: Dotyisle]
lar84 Offline
Third_Degree_AS_Kicker

Registered: 08/26/11
Posts: 265
Loc: Virginia
Farmer K, I read the Let The Healing Begin part of your blog, and I was in tears. That is SO many of our stories, all the same! It's amazing and pathetic at the same time. NSD has literally, literally saved me. I feel born again. Your sentence about Kirk worrying if he'd be able to throw a frisbee....I SO identify with that. It was the small things in life like just being able to walk from point A to point B that I would envy other people about. Now it doesn't even cross my mind. I try everyday to remind myself not to take the simple things for granted, although I still feel bitterness that I should even have to think about these things. But such is life.

Thank you for sharing your blog with us. I will make sure to read your recipes!
_________________________
Lauren S.

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#469695 - 05/15/12 08:19 PM Re: Hi my name is Tim and I am a NSD success story [Re: lar84]
Farmer_K Offline
Member

Registered: 05/14/12
Posts: 30
Loc: Queensland, Australia
Hey lar84! Thank you for your comment and lovely words. You are so right, it definitely is the little things in life that turn into huge, mammoth things when you are suffering from something so debilitating - walking, sitting, driving, showering....
If you have any tips or ideas with NSD please let me know...I am still learning! xx

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#470468 - 05/25/12 02:50 PM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
bamboospine Offline
New_Member

Registered: 05/09/12
Posts: 7
Loc: New Hampshire
Hi. This is my first post. I've only been on the diet for four months now, but I appear to have put my AS into remission with NSD. Here's my story:

Symptoms started for me when I was 25, seven years ago, with what felt like a pulled hamstring. I was sure that this was some sort of injury and just waited for it to heal. Instead, over the next few months the pain mysteriously started to move from place to place in my legs and girdle area, increasing in intensity.

I was referred to a neurologist, who was mostly interested to find out whether this was a symptom of Myotonic Muscular Dystrophe, another genetic disease that runs in my family. My father died of it, and my sister has it pretty bad. I was tested and it turns out I dodged that one (pretty sure I got the HLA-B27 from my mom). My family has a curse on it, which probably began with my unspeakably evil great-grandfather.

Anyway the neurologist sent me on my way saying that this was an issue with posture or a lingering soft-tissue injury that would get better with stretching and strengthening, which made sense to me. But by that fall, things got really bad. I felt like I was walking waist deep in water, and the water was pain. The inhibition to move at all was so powerful that I lost my natural gait, and had to walk by micromanaging my legs.

Soon, pain between my shoulder blades would show up in the middle of the night and keep me awake, and while I was lying in bed I discovered a different issue. I began feeling palpitations. At first I mistook these for air bubbles, like little low pre-burp gurgles, but soon realized they were sensations coming from my heart. I would hear the normal thump-thump . . . thump-thump of my heartbeat, but then, occasionally, a thump-thump, thumthi . . . . . . . THUMPthi . . . . . . . . . . . . THUMPthi. . . . I went to the hospital and an echocardiogram determined that my heart was only pumping out about 30% of its volume with each beat (a healthy heart pumps 55-60%)--a condition called cardiomyopathy. I was in danger of "Sudden Death", where the heart falls out of rhythm and then just gives up like a confused dancer. I was put on beta blockers and it was recommended that I have a defibrillator (an ICD) implanted in my chest to automatically administer an electric shock if my heart stopped. This was all while I was 25-26. I actually think that one reason it took so long for me to get an AS diagnosis was that I was much more worried about my heart than my body. It was only later when I got the AS diagnosis that I learned the two conditions are probably related.

For years nothing changed--six years to be exact--and the pain continued to come and go. In 2010-2011 pain in my lower back got pretty bad and just stuck around--I mean like no relief at all for sixteen months. Then about a year ago I moved to New Hampshire, and switched PTs. Interestingly this new PT was the one (not the two neurologists, the three cardiologists, the four or five GPs I saw at the University of Chicago Student Care Center) who said I ought to get checked for AS. My X-rays and MRI showed some milky ribbons of calcification in the sacrum and spine--the beginnings of fusion. (My HLA-B27 test actually came back 'inconclusive'--I've just had that re-done and am awaiting results). So I was diagnosed. This was August of 2011.

I was referred to a rheumy and she did what (apparently, as I read others' stories) rheumys do: she gave me a short list of pharmaceuticals, starting with stronger NSAIDS than I had been taking. For the next four months I was on the NSAIDs, and these didn't work at all. This worried me because the next in her "big bag of tricks"--these were her secretary's words on the phone, though to me this doesn't seem like a very big bag--seemed scary to me: the immunosuppressant anti-TNFa drugs.

That was when I began to experiment with diet. This was supposed to be simple: I had heard that some foods are 'inflammatory' like wheat, and I thought I'd just get a list of those so I could avoid them. But one thing led to another and after trying a Paleo diet for a month I finally ran across a reference to the no-starch diet for AS (what a fool I was--should have done a thorough search on AS treatment right away), which linked me to kickas.org and the blog sickopportunity.com. After a little reading--including this thread--my wife and I decided I should just go all-out NSD that night. That morning I ate sauteed shrimp with spinach and avocado.

By about two weeks in (including some NSD novice missteps) my pain had gone from the 4-6 range to 0-1, which is where I've been now for four months, off NSAIDS for the last two. I'm still learning about the diet, and I turn out to be pretty starch sensitive. It seems I tolerate simple sugars and dairy in moderation. I will flare to about a 4 for two or three days if I eat the wrong thing: a fistful of macaroons on the way home from the supermarket that later tested jet black, an enzyme supplement I did not suspect (where the starch is in that I don't know), maltodextrin, coconut milk, watermelon--these things have tricked me. If I'm careful and stick to what I know I do not flare at all.

A recent visit to the rheumy confirmed two things: First, doctors are disappointing here. Has anyone else had the experience of telling their doctor this amazing story about actually curing a crippling, incurable disease only to have them frown and tell you they're happy that it 'works for you'? What an unseeking, uninquiring way to respond. Thus the conversation ends where it ought to begin. Second, my bloodwork showed my CRP (indicator for inflammation) now fell squarely in the normal range.

Then the recent trip to the cardiologist. Over the years my heart had mysteriously been improving its function bit by bit. Originally the cardiologist told me that this couldn't happen, but it did: my heart went from pumping out 30% to 35% to 40% to 45%, with each semiannual echocardiogram from 2007-2010. I became glad I declined the ICD. I don't know how this came about, but my best theory is that the heart issue is either AS related or another GI autoimmune issue. When I was tested at 30% I had been a vegetarian for five years, but when I got the diagnosis I gave it up on a recommendation from my cardiologist. I recently ran across one study Dr. Erbringer talks about showed that vegetarians have on average over 40 times the number of klebsiella in their feces, and of course there are all sorts of other differences in the gut flora too. And this recent visit? Well I can't be sure if the NSD is the reason but this echo showed my heart pumping out 55% of its volume with each beat--in other words: normal. The report literally says "all valves working normally".

Of course I may keel over tomorrow, who knows. But I truly feel well now, which is just unbelievable. I recently took my first long meandering hike in years (this, one of my favorite things in life, became one of my biggest no-nos). More importantly, my son Ben, our first, was born on April 12th and I have been able to be the legs of the family while my wife recovers. I'm hoping his dad will get stronger and stronger. I'm truly thankful to the people who have taken the time to make the NSD a presence online for the sake of others like me. I usually avoid computers whenever possible, but I feel very lucky that we live in a time when we can spread ideas outside the orthodoxy so easily. It changed (and maybe saved) my life. Thank you.

If you're thinking of starting NSD for heaven's sake give it a try. If you want a teaser of what's to come try a dinner to dinner fast. That's simple--it's certainly cheap--and very convincing.

I am writing a personal essay intended for publication about my experiences with AS and the diet. Trying to get the word out. I'll post a few questions I have in a different thread.

Charlie

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#470573 - 05/27/12 01:54 AM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
Yatesy Offline
New_Member

Registered: 05/10/12
Posts: 12
Loc: Western Australia
Charlie ,
Firstly - I have Had issues with my lower back my neck and my hip and also sometimes my knees for years- ( 17 yrs) put i put it down to wear and tear from being a dancer for too long. I exercised I did yoga I swam. I had physio and mostly it was manageable - 4 years ago my hip got so bad I was limping - the doctor said it was bursitis and I had a cortisone shot which really worked. I took NSAIDs quite often for all the joint pain.
Then 6 years ago I got really sick - symptoms akin to parasitic infection - the doctors treated it with Flagyl - but it never really went away completely.
I managed my diet to some degree - cutting out bread pastry etc.
About 5 months ago my hip became chronic again - thus time the cortisone didn't work. Weeks of doctors visits and then my lower back and neck became so painful I couldn't sleep - I became really run down and started taking time off work. I was in chronic pain and I could hardly walk or sleep.
In the meantime I had begun researching AS as my GF has it and she said I had all the symptoms - test upon test and a really misogynistic rheumatologist said I was fine - go get a massage I was told.
By now I had started a NSD and found a great naturopath. It was only then that I started to get well again.
Having doctors tell you that there is nothing wrong with you when you are clearly in pain and limping is soul destroying. I know how you feel. At one stage the doc told me not to change my diet at all!!
I just did a dinner to dinner fast and had my first pain free sleep in months!
I've been on the NSD for 3 weeks only and it was only when a naturopath told me I had intestinal parasites that I really started recovering my energy - I started a no sugar diet along with the NSD. Then I discovered that eggs and dairy irritate also so I cut them out and now fasting is my new Spruce up for inflammation.
I've done a lot of research on parasite leaky gut and auto immune diseases - it all makes sense to me as I've had stomach issues for years and had to cut out many foods over that time.
I'm now taking garlic, poa darco, bron enzyme and alfalfa supplements for the inflammation and parasites and also probiotics for the leaky gut.
I am stretching and walking 15 minutes a day and hope to get back to swimming soon.
I'm undecided as to whether I should see a different rheumy but it seems eventually I might need a traditional medical diagnosis just to show society that I'm not lying or neurotic.
This makes me sad I must say - that doctors fail to see that food can be medicine or poison.
In the meantime I'm so overjoyed to have been able to sleep and dream again .
To sleep, ah perchance to dream.
Good luck with the diet - good for you and good for me smile

Claire

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