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#205920 - 09/05/09 12:59 AM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
FormerFoodie Offline

Registered: 05/08/09
Posts: 492
Loc: SF Bay Area, California, USA
I had placed a long winded post on the "alternative" folder regarding my experience with acupuncture. Someone recommended that I put a link of that post on the success story thread since a strict NSD diet played an integral role in my ability to manage the disease.

I am eternally grateful for the reams of helpful information I learned from this forum. I hope sharing my experiences can be as helpful to others.

"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_

#205921 - 10/02/09 08:41 AM Re: No/Low Starch Diet Success Stories [Re: sundar]
jay_bharat Offline

Registered: 12/08/08
Posts: 718
Loc: INDIA, Tamil Nadu
Hi Sundar,
I have sent a PM to you. Kindly go thro and reply.


#205922 - 10/07/09 12:54 PM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
bea_arthur_itis Offline

Registered: 09/01/09
Posts: 389
I thought the diet did not work for me 3 months ago when I "tried" it.I read about it on miscellaneous sites about Dr Ebringer,Carol Sinclair,Kleb and AS.I decided to "try" it. I was subconsciously sabotaging myself (no iodine,eating beans,dipping fruit in sugar-doing things I knew weren't right)because the thought of permanently giving up my favorite Shipley's donut was terrifying!What's there left to enjoy in life without donuts?? LOL I'll tell you what's left to enjoy:WALKING!!!Something I very much took for granted before the dreaded disease struck.

After I decided "it didn't work for me",I started back w/ pizza,donuts,etc,all the delicious things and I was 10X worse.I was crippled! I had to quit my FT job and go PT.I had to quit riding my motorcycle. It was excruciating.I cried.I thought "I'm gonna prove this Dr wrong" I did a culture on myself and I had substantially more Klebs than the general population. I got sad because I knew I had to do the diet.I thought"what's wrong with you?You have a chance to be pain free,to not go on those meds you are so scared of.You should be happy."(I am terrified of TNF blockers because I have a family member with MS-I also work in a lab with blood,spinal fluid,live bacterial cultures-I need all my immunity).

That's when I started.I knew it had to be done.I knew this was not just some experiment.This was a NEW WAY OF LIFE.This is a 100% commitment.1 little wrong thing can cripple you so it is an ALL OR NOTHING thing.

So I started very strict.Within 3 days I was RUNNING in the park.I sobbed with happiness.I tear up as I write this now.My life had hope again.My husband,who acted like his best friend had died when I got diagnosed almost cried,too.He said after diagnosis "now we can't do all the things we planned"It was like it was all given back to us.Thank you JESUS!!!!.I then decided to write Professor Ebringer to let him know what he had done for us.I needed him to know how grateful I am.He is so modest and nice,considering his contributions and who he is. What a wonderful Professor.

The only way this works is to start strict,add one food at a time,write down your pain levels,match them w/ what you're eating(by writing down everything you eat/drink,supplement).It is in this way I found out cream cheese and almonds(yes,WITHOUT skins)crippled me.Now this would lead a person to think the diet didn't work.They might say "almonds are ok"Well the secret is what's "safe" may not be "safe" for you.
In short IT DOES WORK.It takes major dedication and will power.The only way you will know it works is by doing it and doing it 100%.There is no room for "just 1 thing"

My pain levels stay around 0-1.I live a normal life now(walking,playing sports,etc)no meds whatsoever!!! It's wonderful.Having to test everything is a little annoying,but worth it. I'm a "walking" success story!!!!
Off antibiotics and now exploring mindbody healing.

#205923 - 10/10/09 11:54 AM Re: No/Low Starch Diet Success Stories [Re: bea_arthur_itis]
bea_arthur_itis Offline

Registered: 09/01/09
Posts: 389
I also want to add that I have to do all my coconut flour baking w/ honey.Table sugar bothers me, too.Honey is fine!My chocolate cake tastes just as good to me!
I am one of the most sensitive on this diet,I guess, but I don't care.Eat to live!
Off antibiotics and now exploring mindbody healing.

#205924 - 10/26/09 05:23 AM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
kyliesmiley Offline

Registered: 10/26/07
Posts: 8
Loc: Sydney, Australia
Hi, my name is Kylie and I've been lurking around this forum for too long without giving anything back, which is a travesty given all I have learned from it. I visit now and see people starting out on the diet, filled with doubt, confused, angry and frustrated and I want to scream to them 'DON'T GIVE UP!'. It's a long road, it's a hard road - much harder for some than for others, but if I can do it, you can. For me the diet was not a simple case of 'ditch starches, get better' - but I got there.

I have been diagnosed with AS, well probably. I'm HLA-B27+. I used to be fit, know the story. I'm a bit of a mad researcher, so first week after diagnosis I was here. I was so happy - there was hope. I started right away. No starches, none. Apples apples, fetta cheese where there used to be pasta....and I was crippled. I was sicker than I had ever been. I had chronic diahorrea, lost kilos and kilos. I cried, it wasn't fair, the hope was gone. Then, I read more and saw that some people couldn't eat dairy. Some people couldn't eat much fruit. Perhaps I was like them? Turns out I was and the very things I was binging on were making me worse. I still can't eat any apples or any cow dairy - or any eggs.

My diet is very restricted. People think I'm nuts, or a hypochondriac. I don't tell my doctors, it's not worth patronising. None of this matters one bit to me because it works. It really does. I'm not 100% pain free, and I'm not the 'I stopped eating starches and 3 days later I could run a marathon' success story, but I am far better than I was before I started the diet, I'm on no medication, and I'm in control.

My advice to newcomers is to keep going if at first you don't succeed, keep a food diary and try not to be too put off by the contradictory info around. It's contradictory cause we're all a bit different.

...and lastly, thanks to all the regular contributors here. You guys saved me.

#205925 - 11/07/09 06:08 PM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
Ted_W Offline

Registered: 08/15/09
Posts: 1
You guys saved my life. Ive been undiagnosed for four years with what i believe is AS. My mother has it, it took 5 years for her to get a diagnosis. she is now on enbrel and claims about the relief i recieved by cutting out starch.

You ever here of how they make enbrel? They insert human DNA into a hamster's ovary and harvest the proteins. So you are essentialy injecting yourself with hamsters once a week for $500/week. (google enbrel and hamsters) The side effects include death. I do hear it works real good though.

ive been LSDing since July, this works far better than any other treatment ive tried, and i bounced around from doctor to doctor for around 2 years before i gave up on them. Not one of these "specialists" ever suggested changing my diet for any other purpose besides weight loss. I shouldn't get started on doctors in america...

I can get a good nights sleep without pills now, almost every night, and ive shed ten pounds. I was going to lose my job/insurance because my manager thought my problems were alchohol or drug related. I was pretty much in pain all the time, the longer i sat or laid down the more it hurt.

This web site has given me back my life. I would have never put it together that the wheat and rice was such a major factor in my pain. The diet sucks, i miss a lot of foods i love, but starch=pain. Once you wrap that equasion around your brain the choice is clear.

Thanks again

#369782 - 12/21/09 11:35 PM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
IamGrateful Offline

Registered: 11/04/09
Posts: 55
Loc: San Francisco Bay Area, CA
Success Story and I need to share it... smile

I was in pain and was desperate to try anything.

Well, I read the IBS Low Starch Diet book. I started the diet on November 1st, 2009. Basically, I went super strict. Only ate meat (chicken, fish, beef or lamb) and veggies and fruits. And non lactose milk. No nuts except almonds without the skins, at first.

Well, I was on NSAID's and feared I'd have to get on the biologics but...

I improved after a week. After a couple of weeks or three, I stopped the NSAID's.

It's now December 21st. I have no pain, my colitis symptoms (bleeding) went away finally, no MEDS! My stomach no longer gets bloated after every meal. I lost the pounds I hadnt been able to. I look younger, feel stronger and have waayyy more energy.

Give it a try. How will you know if it works or not if you don't try? YEs, it's a strict diet, but it's better to be able to walk and do anything you want to!!And its a healthy diet because you eat tons of veggies and fruits. Fruits have carbs so you still get your carbs.

The book says some people are able to eat a little starch after a while. I will try to eat some later on.

Oh, and I proved its true, because I had very bad pain for a few days after eating cheesecake one time. And after eating low fat ice cream with maltodextrin; the next day I had diarrhea and had pain in my back for a few days. No more of that for me!!However, I am sure now that in case I eat something I shouldn't have, if I just wait, the pain will go away after a few days.

I have to make time now to go see my rheumy. I cancelled my last appt with him since I felt so great.

Try it. Hope it works for you.
Diagnosed with AS in August 2009

#370178 - 12/24/09 07:21 PM Re: No/Low Starch Diet Success Stories [Re: IamGrateful]
X_R_Size Offline

Registered: 12/22/09
Posts: 1
Loc: Victoria, BC, Canada
Male (early onset) - Caucasian
Eastern European descent (mostly German)
Arthritis runs in family (dad’s side)
HLA-B27 positive

Long story....

My first memories of pain started when I was 13. Interestingly, I can trace things back to Sept of 1981 after a nasty sickness. I remember it well, severe nausea for 7 days, without relief. I couldn’t eat, sleep, drink or even move without instantly vomiting. I was delirious with fever and by the time I was hyperventilating uncontrollably, was moved to a hospital. Thankfully, I didn’t die. The doctors eventually told my mom I was suffering from Gastritis (an infection of the stomach lining). More on the connection later on...

Shortly after my recovery, my back woes began. I had a hard time sleeping the whole night and would wake up with lower back aches that no amount of twisting, turning, flipping and flopping could alleviate. Yet this pain would manifest itself only in bed, then disappear shortly after I got up. Was it a cheap mattress? Poor sleeping posture? Too many pillows? Not enough pillows? Too many sports? Growing pains? Doctors could never tell me, so I thought it was just a “bad back” and lived with it.

As a youth, I was into athletics: track, soccer, football, golf, road & floor hockey (hey.. I’m Canadian after all) but finally settled into competitive badminton as my sport of choice. I got quite good too - but as the years progressed, so did my aches & pains. Never once did I injure myself, yet I was repeatedly forced to live with sharp pains in my hips. This made me limp periodically (or sometime collapse) throughout high school, always one side at a time, then the other. Classmates thought I was either faking or just plain fragile. Not nice.

Moving into young adulthood, harsh pain came and went - seemingly without rhyme or reason. I soon discovered Ibuprofen, which seemed to work well enough that I could tolerate the pain... most of the time. Sleeping on my back with my head propped up seemed to help quite a bit too, so I took to sleeping on the couch (as habitual stomach sleeper, the couch kept me from rolling over). Although, this tactic took a heavy toll on one of my relationships at the time - she didn’t like the idea, but the pain was too much.

But it wasn’t until I turned 21 that I made a new connection. My long-lost father contacted me (he left when I was 5) and it was obvious that Arthritis ruled his life now. So by genetic predisposition, this could be my fate too, as his symptoms seemed to match mine better than most anything else.

This was my first turning point. I did some library research on arthritis (no internet yet.. lol) which suggested I eliminate nightshade vegetables (potatoes, peppers, tomatoes). I also resolved to start hitting the gym religiously to strengthen supporting muscles to better combat the physical effects on my joints. It didn’t take long for the two changes to start reaping benefits. I was in less pain, way less often. However, I wasn’t in total control of my body yet and still couldn’t predict the flaring.

Between 1990 and 2006 I lived with my “arthritis” having regular periods of intense pain and remission. I kept weight training and watching my diet, loading up on Ibuprofen whenever I flared. Various doctor visits over the years proved nothing, even with advances in medicine. Nobody ever had answers. Especially since I had now built up my body and had a strong, muscular, healthy looking physique. New doctors had a hard time believing my story. And various X-Rays of my spine never showed anything - no discs out of place, no fusing - nothing abnormal at all.

However, I have suffered an occasional super-flare... I’d call them “attacks”. Excruciating pain episodes that are frighteningly debilitating. I literally couldn’t get out of bed. In fact, I couldn’t eat, go to the bathroom or even flinch without breaking into a cold sweat from the sharp stabbing sensations in my groin. So overwhelming, I once screamed off and on for 3 days (laughing at the same time - because the pain was so ridiculous). The poor guy who lived in the condo below me.. well, must’ve thought I was some evil, maniacal whack job.

The final turning point came one morning in 2006 - I woke up unable to move my neck. Eating & driving was instantly a major challenge - I couldn’t even put on my socks or tie my shoes! I lived with the pain for a few weeks (thinking I had slept funny or something), but without relief I finally turned to the internet. Thankfully I stumbled upon the forums, AS and the Low/No Starch Diet connection... everything fit! I immediately tried out a NSD and my neck un-seized within just one day. Wow, and my “bad back” magically disappeared too - I couldn’t believe it. I finally had control.

As of this writing, it’s almost 2010, and I haven’t looked back. I simply don’t (or rarely) eat bread, pasta, rice, flour & potatoes. I eat lots of veggies, meat, fruit, seeds & nuts and can tolerate dairy no problem. This diet, as a great side effect, literally forces me into eating healthy - and if I slip up too often, pain always forces me back in line.

Yes, I have had AS for almost 30 years - and will have to follow a LSD/NSD and go to the gym every day for the rest of my life - a small price to pay. Consider the following as of Dec 24th, 2009:

- 41 Years old
- 5’7” 150 lbs
- Single digit body-fat (year round)
- Sprint: 100m in 15 seconds
- Jog: 6 minute mile
- Bench Press: 300 pounds
- Zero spine calcification (last Xray in 2006)
- 99% Pain free
- Living an “optimal” life!

Having spent the last 20 years in the gym and the last 5 years on a LSD I’m living proof that this can really work for many of us who suffer from AS. I encourage anyone who thinks they even “may” have this disorder to try the diet. Your doctor may scoff, but you know your body better than him/her. A fused spine does not have to be in your future and you have nothing to lose. Kick [*bleep*] (Ankylosing Spondylitis Syndrome) now!

P.S. Interestingly, the gastritis I had as a child can be triggered by many autoimmune diseases (tadah... like AS). I had once thought that the gastritis caused my AS (bacteria introduced into the system), but I now suspect it was the other way around.

Pain Progression (over 25 years):
1) Low Back
2) Hips (side to side)
3) Neck

LSD (switch to NSD if pain flares)
Exercise (weight training 6-7 days/wk)
Ibuprofen 400mg (only if needed during pain flare ups) - very rare now

#372373 - 01/10/10 11:03 PM Re: No/Low Starch Diet Success Stories [Re: bea_arthur_itis]
bea_arthur_itis Offline

Registered: 09/01/09
Posts: 389
update:table sugar is ok for me!! i was still learning,then.I just can't have dairy and almonds frown
Off antibiotics and now exploring mindbody healing.

#373773 - 01/21/10 12:36 PM Re: No/Low Starch Diet Success Stories [Re: bea_arthur_itis]
Beef Offline

Registered: 11/23/09
Posts: 27


Another success story. I've been on the diet since November last year thanks to this site.

I still have some symptoms each day but there is a huge difference and I have not been doing the very strict version of the diet where you cut out cooked veg and things like vitamin pills with starch.

I might try it strict for a week to see if it is worth going the whole way.

I have tested the diet on three occasions by returning to some starch. Each time I cannot believe how obvious a difference it makes. Yesterday I had a sandwich for lunch and this morning I was really stiff. The time before that when I ate starch for a couple of days it took about a week to feel all the benefits of the diet again.

After a couple of months on the diet I have been able to sleep on my front again which had become too painful. I'm almost embarressed to go to physiotherpy in case they think I am too well.

Thanks everyone,


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