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Thread: Does anyone have ankylosing spondylitis and needs to avoid starches? page

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    TARNIP's Avatar
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    Does anyone have ankylosing spondylitis and needs to avoid starches?

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    I have been finding lately that when I eat anything starchy such as bananas, potatoes and especially rice my pain levels go through the roof. I am finding it so difficult to try and eat starch free primal and was wondering if there was any one else out there going through the same thing?

    I also seem to be nearly addictied to starches (oddly enough) but have found the worst thing for me to eat is rice as I will end up stiff and sore pretty much immediately and it lasts for ages too. I feel crappy when I drop the starches and do lower carb. My tummy and joints are happy low carbing but my head goes somewhere else to the point where I nearly have car accidents and make big mistakes at work because my thinking capacity flies straight out the window.

    I would really appreciate any possible advice or tips anyone has to help me with this as the only thing my GP and Rheumatologist want to do is give me anti inflammatory drugs which I know will make my stomach issues much worse than they already are.......

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    Going low carb (REAL low carb) can be hard. IF you haven't checked it out, the "EAT MOAR FAT" thread that PaleoBird started a couple weeks back has lots of good info on ketosis:
    http://www.marksdailyapple.com/forum/thread65113.html

    I'm not saying you necessarily need to be in ketosis, but some of the same principles apply to a VLC diet. It can take a few weeks to become fully adapted to a much lower carb intake. Also, one of the key points made in the thread is that many people who try a ketotic diet eat too much protein to effectively be in ketosis. Dr. Peter Attia's blog is also a great resource cited in the above thread:
    The Eating Academy | Peter Attia, M.D. The Eating Academy | Peter Attia, M.D.

    I hope some of this helps.

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    We eat 0% starch. It is difficult; anything that you would typically buy in a bottle or can usually has some sort of starch in some form added to it. I have to prepare a lot of things from scratch, and in advance, and store. No potatoes, no beans, no organic corn in our CSA box, not even remnants of starch in any label, anywhere.

    I do give bananas to the children (and eat them on occasion myself) but we wait until they are spotted brown.

    Starch is a polysaccharide, a "multi-sugar", and people with compromised digestive systems can't process them correctly. If they're not completely broken down by the enzymes in the mouth and stomach, the SI can screw things up if your gut villi are blunted in any way - and sugars pass through undigested. This is a problem and will worsen if you ignore it.

    Go no starch if that's what your body's telling you; it can be done and your body will thank you for it. Give it time to heal.

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    TARNIP's Avatar
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    Thank you for your replies :-)

    Yodiewan - I have tried to reach ketosis before but I felt terrible and am thinking it was due to the fact that I was still consuming too much protein as you mentioned. Is there a protein limit you musn't exceed to be able to be in ketosis and not have 'zombie brain'? I will definately get around to reading the links you provided too :-)

    Ennaejay - You guys are amazing eating zero starch! I know I feel so much better when I don't eat it. I can handle it in small amounts (like in condiments etc) but grains are out (obviously) as are other starchy fruit and veggies. My digestive issues, stomach pains and joint aches all pretty much disappear without them but it does become difficult as I have to cook for my husband and daughter and neither are prepared to eat the way I do.

    You are right that the problem will worsen if you ignore it, I am living proof of that at the moment as I do find it really difficult to not eat potatoes/rice occassionally :-( I know I have a compromised digestive system and blunted gut villi, so I am just going to have to suck it up and try alot harder to make this work.

    If it's not too much trouble, would you maybe be able to give me an example of what you eat in a day?

    Thank you again :-)

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    We did zero starch for several months, but being very lean and fit, we needed more carbohydrate after work outs (sweet potatoes).

    Prior to this, it was simple enough: veggies, meat, eggs, fruit (berries and citrus). Easy enough, right? Just keep it simple.

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    Tarnip-

    I have AS and was at my WITS END in June of this year. I was seriously barely able to move I was so stiff with fusing happening in my lumbar and cervical spine and sacroiliac joints. I'm 33 with two young kids and was a full-time professional mom until all this AS came out of nowhere last spring and rapidly declined downhill very fast and furious, with every conventional medical therapy falling short. By January of 2012, I had Exhausted the few medicine options available. Being allergic to anti-inflammatories, I began a regimen of prednisone and injectable methotrexate, had Gabapentin added, then Humira. Not to mention two different types of narcotic pain relievers, yet deterioration continued, which caused more and more pain and stiffness. By June of this year, being barely able to walk with a cane, both wrists in splints from the nerve damage in my arms due to the compression of the nerve root at C4-C6, and the agony in my hips, knees, and ankles making our three stairs to enter our home almost impossible, I was having a MELTDOWN! To be diagnosed with a disease no one's heard of one summer, and almost completely crippled by it by the following summer, while having not one pain-free moment in that year nor sleeping good for at least 6 months (I mean-how totally LAME is it that you hurt too bad to fall asleep, lay there with sleepy tears running down your face until 4am, finally doze off, but are awakened within two hours with more pain? Therefore literally sleeping any moment of any day that you're able to doze off, round the clock?!). Seriously-I was a MESS!

    Then, on June 17th, 2012, I received my google alert for the day on AS web entries that were updated or new that day and one of the links was to kickas.org, which is England's nonprofit AS foundation. They have a study published there on a Molecular Mimicry theory from 1989. The foundation's founder stumbled upon some extraordinary, accidental findings back then when attempting to treat the more severe AS patients that had begun experiencing Chrohn's Disease. Typically about half of AS patients get this after having AS for a long time or having a rapidly progressive case. Mine began in March. When he began treating the willing participants through dietary changes to handle the digestive issues, these severe cases started experiencing relief from their AS symptoms! And it was about 96% of the cases! He didn't know why and investigated further and the Molecular Mimicry theory was developed based on the research collected that the gene for AS (HLA-B27), on the surface, looks to our antibodies, as identical to the common gut bacteria Klebsiella. Klebsiella lives in the small intestine and survive singlehandedly on STARCH. He was treating the Chrohn's/AS patients with a Low or No Starch Diet. The Klebs were effectively being starved, and going dormant. The body stopped manufacturing antibodies to kill the Klebs (obviously some gut permeability in play prior to onset of AS which allowed the antibodies to identify Klebs as a threat systemically and manufacture an antibody), and thereby, the body stopped attacking its own AS genes in the joints with the antibodies, which allowed symptoms to lessen.

    Here's the thing: it's all a "theory" because no further research to prove causation was funded. Hmmm. Wonder why? I'm thinking it may be difficult to sell Humira for $1,200 per shot, taken every two weeks, of diet alone can improve symptoms, and way better?!?! Well, I don't need a double-blind, peer-reviewed, placebo-controlled experiment printed in a medical journal to perform my own self-experiment! This is the first time I had seen anything about diet changes related to AS, and although I wasnt trying to diet, I put "trying to LIVE" pretty high on my list of priorities! I cut out all starch from my diet right then and there. I mean - I had a fresh loaf of bread coming out of the bread maker 23 minutes after I read the article and made my husband fumigate the house to save me from the heavenly aroma! He picked me up a bottle of iodine so I could test every food item for starch before eating, and I began my experiment at that exact moment in time. By way of trying to find more information on fit permeability and starch-free diet options, I found MDA the next day and went Primal. All of this was almost three months ago to day, as well as 42 pounds and one cane ago!!! Sister, I've finally found not just a "therapy", but a CURE! So much for "painful, debilitating, progressive auto-immune inflammatory arthritis for which there is no cure" according to our American organization, Spondylitis Association of America! I will definitely be sending a Friday's success story in a few months!

    Seriously, it's not easy and I'm not done, I can't necessarily reverse the spine and hip fusion and damage that has taken place to my nerves; but I can prevent any more from happening and I can stop having pain and exhaustion ruling my life. I always felt prior to this I couldn't live WITHOUT starch, but now I know I can't live WITH starch. And one accidental minute amount (from shredded cheese) caused me to flare and be in bed for four days about six weeks ago. Starch is in EVERYTHING. It's used to thicken food that's low fat or fat free, it's used as a preservative, it's used to package items to prevent them from clumping. You can look at identical cheeses, the same amount, brand, type, price with the only difference being one is a block and one is shredded and the shredded contains starch to prevent clumping. Sour cream-must have "all natural", full fat. I thought regular was all natural! Kefir, cottage cheese, yogurt, even some frozen meats, veggies, and fruits can contain it! It's INSANE! I do a LOT of cooking from scratch. I am fine with full fat, all natural dairy. All natural condiments or made by me. I eat a ton of veggies and relative large amount of fruit (no bananas, apples, pears), and meats and eggs. No tubers at all. No rice or any grains. No legumes or lentils.It seemed restrictive for the first eight days, until I experienced my first TWENTY WHOLE pain-free minutes in an entire year! And now I KNOW restrictive is MY LIFE on starch; I prefer no restrictions for the rest of it, which is finally starting to look up!

    I've had to work with my protein intake, too and I don't have it all exactly worked out perfectly, but I'm making progress on getting it better balanced so I can keep living with no starch. If you want, feel free to email me - I thought I was the only one here!!! megdallas-at-gmail.com. Good luck to you continuing your success and finding your happy place, too! -Megan

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    TARNIP's Avatar
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    Thank you so much for your reply Megan :-)

    I have been quite lucky so far that my symptoms, whilst being uncomfortable over the past few years haven't been too debilitating (either that or I've just gotten used to being in pain!). I used to be able to eat a low-moderate starch diet and be ok but am now finding that smaller amounts of starch are triggering pain and stiffness all over my body.

    You have done so well following the KickAs dietary protocol recommendations! I am a member on their forums but must admit I haven't been on there for a while as I didn't seem to suffer with the AS as badly as so many of the other members do and I guess I sort of felt in a way that I didn't really belong there..........lately though things have certainly been changing. I think my lucky streak may have finally run out. I do find going starch free exceptionally difficult. I remember telling a friend of mine that the day my pain/stiffness outruns my desire for starches I might consider giving them up completely but until then I am still going to eat them! Well I have now got to the point where the pain is worse than the desire to eat starch.
    I would find being starch free much easier if I was single with no children and living on my own but the stressors of having other family members to think about when cooking meals etc gets too much to bear at times. It got to the point (when I have tried in the past) where I was spending nearly every moment I wasn't working or sleeping, in the kitchen preparing different meals for every one to eat!

    I can really empathize with your sleeping issues. I have broken sleep every night as every time I roll over, I ache and I wake up. My AS was diagnosed after having my daughter. I have never been the same after her and have pretty much been in some sort of pain/discomfort for the past 5 years now. I am 35 years old but sometimes feel like I'm living in the body of an 80 year old. My worst experience was Christmas about 2 years ago. We took our daughter to a theme park and I had to get around in a walking frame like an old lady, it was awful.

    You have done so well not only being able to be cane free but also losing so much weight! I only hope I can lose that much and some more! I know I am definately going to have to try alot harder to succeed at this but at least I guess we will always have our pain to keep us in line if we fall off track!
    So glad to have found someone else on here who knows what it's like! I did think there would be quite a few more as paleo/primal is definately the optimal (if not the only) was for us AS suffers to live relatively pain free. I hate prescription medications and will always endeavour to find another way :-)
    Last edited by TARNIP; 09-17-2012 at 08:59 PM.

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    For those of u on a nsd, can u post a sample of ur daily diet/meals?




    QUOTE=ennaejay;952745]We eat 0% starch. It is difficult; anything that you would typically buy in a bottle or can usually has some sort of starch in some form added to it. I have to prepare a lot of things from scratch, and in advance, and store. No potatoes, no beans, no organic corn in our CSA box, not even remnants of starch in any label, anywhere.

    I do give bananas to the children (and eat them on occasion myself) but we wait until they are spotted brown.

    Starch is a polysaccharide, a "multi-sugar", and people with compromised digestive systems can't process them correctly. If they're not completely broken down by the enzymes in the mouth and stomach, the SI can screw things up if your gut villi are blunted in any way - and sugars pass through undigested. This is a problem and will worsen if you ignore it.

    Go no starch if that's what your body's telling you; it can be done and your body will thank you for it. Give it time to heal.[/QUOTE]

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    But LOL at near 0-carb being difficult. It's super easy!

    I used to be unable to digest starches, once I got autoimmune inflammation in my eye (uveitis, often associated with spondylitis) after eating some undercooked sweet potatoes after months of VLC. I almost went blind in that eye, checked into the ER first time ever, had to take two medications! So I knew I needed to fix my gut. Then I found the resistant starches thread, started eating tiny amounts of cooked, cold potato, and slowly upped it. Within...was it two months? I forget, but now I can eat all the starchy things I want. Plantains, green bananas (not that I'd waste them, they're better rotten and black), sweet potatoes, etc. And no more diarrhea unless I overdo my magnesium once in awhile, lol.
    Last edited by Knifegill; 03-05-2014 at 11:47 PM.


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