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la_monty #445828 06/27/11 06:30 PM
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Is it Okay if I have small amounts of starchy food as a treat? What are the consequenses?
Also, how can I tell if I need no sugar?
I've been on this no starch diet for two months now, and I still am having problems with this diet. I have good days with very little pain, and I have horrible days with terrible pain and locking up of knees. I took a shot of enbrel the other day because the pain was so terrible, but that was a little less than a month ago. I know the NSD takes time, but is there any way I can speed this up? I'm at a very low weight for my height,(almost unhealthy) I can't afford to lose any weight, so fasts are virtually not an option. Is there anything I can eat to gain a little weight on the NSD?

Truth #445839 06/27/11 09:01 PM
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My suggestion is this:-

Try the paleo auto immune protocol

No nuts, seeds, nightshades, sugar, eggs, starch or dairy.

If you don't notice a difference after a few weeks then repost and have a rethink.

This worked well for me. Eat lots of protein, fats and greens. I was never hungry on this, I just kept eating more meat and fish.

Good luck.

Last edited by keit_nufc1; 06/27/11 09:02 PM.
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WELCOME, winston67:

Cayce said that sometimes the apple regimen needed to be repeated for the beneficial effects, and suggested to one person that if "seemed" to fail because he had been working too hard during the diet; it is a time to slow down a bit, and especially de-stress.

The thing with natural cures for this chronic disease is that they work slowly, just like the disease comes on, and not everyone reacts the same way to fasting, for example. Even antibiotics that will reduce symptoms most of the time, can sometimes even increase symptoms--not due to the "Herx" effect, but just because they strip away mucosa and can increase permittivity.

There are explanations for everything but these are sometimes not very obvious.

Sugar from apples can be a problem in severe candidiasis and this condition can explain extended-onset of AS; so many people with AS do have this fungal overgrowth, but it is difficult to say which came on first.

It really is sometimes very difficult to "make the diet work" for us. And water-only fasting is hard, but sometimes one of the only ways to break the cycles.

Cleansings, chelation, elimination diets, etc; these can all help, but it is sometimes not in any overt or obvious way; a lot depends upon our starting point and our perceptive abilities (NSAIDs will totally wipe this out).

I know You are on the right track, and just need a little encouragement--I have been down that same line many times and it requires patience and perseverance; we all have to pay our dues.

HEALTH,
John

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Thanks DragonSlayer. I'll just keep trying. I was getting really down there for a bit.

la_monty #448856 08/07/11 01:48 AM
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My name is Matt. I live in Cambridge, Massachusetts. I'm really grateful to everyone who wrote about their experience on this site, as well as to Bob Connors whose site Sick Opportunity really inspired me.

When I was a junior in college in the northeast, I was rowing on the crew team and had a fall cross country skiing. These two data points constituted the red herrings that put the doctors off the scent for a few months, when I came in with acute back pain, until I got my ankylosing spondalitis diagnosis at a Harvard teaching hospital in Boston. I have never had anything but first-rate care, for which I am extremely grateful.

I took Naprosin for some time until Embrel came along. Before it did, toward the end of my time on Naprosin, I walked with my head glued directly to my shoulders like the tall guy in the Adams Family, and found it at times a bit much to take. It got me down. Enbrel, though, changed that, and I wasn’t Lurch anymore. I could get back into running and even swimming.

I still had to sleep with a bevy of pillows, and would catch my posture fleetingly and obliquely in reflecting surfaces, and be disappointed. I got Iritis. I often felt stooped over and weighed down, and could not ride a bike due to the difficulty of looking around in traffic. And of course, as others before me have pointed out, a burlesque fact worthy only of tragedy-comedy: I could not sneeze.

I considered all this par for the course, and did not have high expectations. I just was pleased that the pain was not excruciating 24/7, and I guess that other than that my karma was one of passive acceptance of my fate. I had become very Buddhist about suffering over the years, and more than a little resigned to life being less than one might have hoped.

That was before zucchini changed my life. I have to admit that zucchini had never been high on my list. In fact, it was very low, and while I was growing up, there was always much too much zucchini growing in our garden, and the desserts my mom would make from zucchini never completely disguised the fact that it was a big, green squash -- not dessert.

But then, in the subtle way that important things happen, I came to love zucchini, in much the same way that better men before me have come to stop worrying and love the bomb. OK, I’m joking about loving the bomb. But serious about zucchini, and other things like avocado, tuna, salmon, Greek yogurt and fresh berries, all of which were high on my list, even back in the day -- when baguettes were atop the list, me having spent some of my youth in France, et voilà. Zucchini meatloaf, zucchini fritters.

I know there is no generally accepted proof in the medical community, and I am just one person. My story will be necessarily and by definition anecdotal. But I am extreme, so when I decided to undertake a change in diet, I did so 100%. I’ve got that discipline, and a certain deep desire to exit the hospital predicament. The notion of real change being possible really whetted my appetite. So on August 2, 2011 I went no starch.

Granted, that is exactly four days ago. And I have been able to sleep a little longer on the weekend, without being chased from bed by that wild fire in the rib cage. It feels nice to linger a little, in that drowsy margin where pleasant thoughts mingle like dreams with the shadows and dappled sunshine outside the window.

Generally I am bookish but rugged, and definitely not the sort of person that is always complicating dinner parties with the latest alimentary regime they have discovered. But I can bring my total Greek yogurt and berries along, when the others are all embracing pizza.

Spondalitis is a grindstone tethered to your neck. If you thought someone was going to clobber you from behind, your upper back, shoulders and neck would stiffen, right? But what about being like that all the time, even when not at imminent risk of being clobbered? (Just because your paranoid doesn’t meant they’re not after you.) And that’s with Enbrel.

I’m really glad that people have gone online to write about this because it's easy -- at least for me -- to be in denial about the disease. Everyone’s got back pain, right?

Enbrel is a passive response. I used to want to close the shades when I shot it into my leg once a week, so the neighbors wouldn’t call the narcotics squad. It feels like heroin. When the pain in living is enough, out comes the needle. There is a despair to it, when you relish the pain the needle makes breaking the skin as trivial by comparison.

Enbrel was good enough until recently a local tick gave me Lyme Disease. Off Enbrel for two weeks to take the course of antibiotics, I had spondylitis pain like a medieval rack. My attention riveted toward AS, and I did some internet research, became aware of new things, engaged by the possibility of achieving a condition that was better than “good enough.”

So all this information about diet and the scientific theories behind it is new to me. I am trying to apply it in useful ways beyond my plans some day to obtain a snow-white standard poodle and name it Klebsiella.

It’s nice to be active in finding a solution. The body is not at war with you, it’s just confused. If it needs help eliminating a conflict -- a bacteria that ails it -- shouldn’t you help? Wouldn’t you help any friend in that way?

Stupidly enough, and perhaps like al those folks who impose on the dinner menu at the last moment with an alimentary curve ball, it makes me feel special to have a special diet. Swimming, stretching an other exercise ask something from my body (for its own good). But these foods are a special gift I can prepare, asking nothing in return. Cauliflower soufflé with cheese.

A friend of mine got hepatitis A this summer from eating shellfish. According to Wiki, the symptoms are “malaise.” Ditto for spondalitis, no? It’s just one big mal du siècle.

I have often described the disease like the feeling that someone was pushing your head from behind. It is nice to think that is may not be the hand of God pushing it, but just some baker or pastaman -- some acne-scoured pizza delivery boy you could have taught a lesson to long ago.

I wish I had know about this long ago, as I would have started much earlier. I learned about it last week, and embraced it. I have been thinking why I might have made another choice, and not embraced it. If I did that, I think the reasons would have been psychological. I have to think about this, because I am sure there will be times in the future I think of relinquishing this diet.

Probably the main reason not to try this starch-free lifestyle is a psychological one. If it actually does work, that opens up a host of other questions. Not least: why didn’t I do this long ago. Regret gets you exactly nowhere, and some experiences feed regret more powerfully than others.

Not to mention questions about the medical order in which one is, in every sense of the word, invested.

It also implies a responsibility. I am in fact part of the issue. It’s not just happening to me, but also through my own agency. I need to be accountable for the food with which I nourish myself, and assess its impact on this disease. I am the one doing this to my body.

But I see littler reason not to try it. Like I said, I think from the recent silence in my bones, that my body is not adverse to this.

Why wouldn’t I try it? If it turns out that I miss the old familiar pain like some Kurt Cobain or Elliot Smith song, I can always go back to the “gourmet” pizza.

Wouldn’t it be nice, in any case? The fountain of youth isn’t drink after all, but food. Or more precisely, not food.

Extremism by temperament, tempered by experience, optimally results in a certain realism. Despite my hyperbole about Ponce de León foraging in Florida for the youth fountain, I’m not looking for miracle grow here.

Instead, I am seeking a big picture that includes exercise, physical therapy, therapeutic medicine and diet. If diet can play a positive, albeit incremental, role in my spine’s wellbeing, then it is welcome at my table.

Thank you to all the inspiring people on this site!

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Hi. My name is Matt. I live in Cambridge, Massachusetts.

When I was a junior in college in the northeast, I was rowing on the crew team and had a fall cross country skiing. These two data points constituted the red herrings that put the doctors off the scent for a few months, when I came in with acute back pain, until I got my ankylosing spondalitis diagnosis at a Harvard teaching hospital in Boston. I have never had anything but first-rate care, for which I am extremely grateful.

I took Naprosin for some time until Embrel came along. Before it did, toward the end of my time on Naprosin, I walked with my head glued directly to my shoulders like the tall guy in the Adams Family, and found it at times a bit much to take. It got me down. Enbrel, though, changed that, and I wasn’t Lurch anymore. I could get back into running and even swimming.

I still had to sleep with a bevy of pillows, and would catch my posture fleetingly and obliquely in reflecting surfaces, and be disappointed. I got Iritis. I often felt stooped over and weighed down, and could not ride a bike due to the difficulty of looking around in traffic. And of course, as others before me have pointed out, a burlesque fact worthy only of tragedy-comedy: I could not sneeze.

I considered all this par for the course, and did not have high expectations. I just was pleased that the pain was not excruciating 24/7, and I guess that other than that my karma was one of passive acceptance of my fate. I had become very Buddhist about suffering over the years, and more than a little resigned to life being less than one might have hoped.

That was before zucchini changed my life. I have to admit that zucchini had never been high on my list. In fact, it was very low, and while I was growing up, there was always much too much zucchini growing in our garden, and the desserts my mom would make from zucchini never completely disguised the fact that it was a big, green squash -- not dessert.

But then, in the subtle way that important things happen, I came to love zucchini, in much the same way that better men before me have come to stop worrying and love the bomb. OK, I’m joking about loving the bomb. But serious about zucchini, and other things like avocado, tuna, salmon, Greek yogurt and fresh berries, all of which were high on my list, even back in the day -- when baguettes were atop the list, me having spent some of my youth in France, et voilà. Zucchini meatloaf, zucchini fritters.

I know there is no generally accepted proof in the medical community, and I am just one person. My story will be necessarily and by definition anecdotal. But I am extreme, so when I decided to undertake a change in diet, I did so 100%. I’ve got that discipline, and a certain deep desire to exit the hospital predicament. The notion of real change being possible really whetted my appetite. So on August 2, 2011 I went no starch.

Granted, that is exactly four days ago. And I have been able to sleep a little longer on the weekend, without being chased from bed by that wild fire in the rib cage. It feels nice to linger a little, in that drowsy margin where pleasant thoughts mingle like dreams with the shadows and dappled sunshine outside the window.

Generally I am bookish but rugged, and definitely not the sort of person that is always complicating dinner parties with the latest alimentary regime they have discovered. But I can bring my total Greek yogurt and berries along, when the others are all embracing pizza.

Spondalitis is a grindstone tethered to your neck. If you thought someone was going to clobber you from behind, your upper back, shoulders and neck would stiffen, right? But what about being like that all the time, even when not at imminent risk of being clobbered? (Just because your paranoid doesn’t meant they’re not after you.) And that’s with Enbrel.

I’m really grateful to everyone on this site, and to Bob Connors who started the blog Sick Opportunity, because it’s too easy -- at least for me -- to be in denial about the disease. Everyone’s got back pain, right?

Enbrel is a passive response. I used to want to close the shades when I shot it into my leg once a week, so the neighbors wouldn’t call the narcotics squad. It feels like heroin. When the pain in living is enough, out comes the needle. There is a despair to it, when you relish the pain the needle makes breaking the skin as trivial by comparison.

Enbrel was good enough until recently a local tick gave me Lyme Disease. Off Enbrel for two weeks to take the course of antibiotics, I had spondylitis pain like a medieval rack. My attention riveted toward AS, and I did some internet research, became aware of new things, engaged by the possibility of achieving a condition that was better than “good enough.”

So all this information about diet and the scientific theories behind it is new to me. I am trying to apply it in useful ways beyond my plans some day to obtain a snow-white standard poodle and name it Klebsiella.

It’s nice to be active in finding a solution. The body is not at war with you, it’s just confused. If it needs help eliminating a conflict -- a bacteria that ails it -- shouldn’t you help? Wouldn’t you help any friend in that way?

Stupidly enough, and perhaps like al those folks who impose on the dinner menu at the last moment with an alimentary curve ball, it makes me feel special to have a special diet. Swimming, stretching an other exercise ask something from my body (for its own good). But these foods are a special gift I can prepare, asking nothing in return. Cauliflower soufflé with cheese.

A friend of mine got hepatitis A this summer from eating shellfish. According to Wiki, the symptoms are “malaise.” Ditto for spondalitis, no? It’s just one big mal du siècle.

I have often described the disease like the feeling that someone was pushing your head from behind. It is nice to think that is may not be the hand of God pushing it, but just some baker or pastaman -- some acne-scoured pizza delivery boy you could have taught a lesson to long ago.

I wish I had know about this long ago, as I would have started much earlier. I learned about it last week, and embraced it. I have been thinking why I might have made another choice, and not embraced it. If I did that, I think the reasons would have been psychological. I have to think about this, because I am sure there will be times in the future I think of relinquishing this diet.

Probably the main reason not to try this starch-free lifestyle is a psychological one. If it actually does work, that opens up a host of other questions. Not least: why didn’t I do this long ago. Regret gets you exactly nowhere, and some experiences feed regret more powerfully than others.

Not to mention questions about the medical order in which one is, in every sense of the word, invested.

It also implies a responsibility. I am in fact part of the issue. It’s not just happening to me, but also through my own agency. I need to be accountable for the food with which I nourish myself, and assess its impact on this disease. I am the one doing this to my body.

But I see littler reason not to try it. Like I said, I think from the recent silence in my bones, that my body is not adverse to this.

Why wouldn’t I try it? If it turns out that I miss the old familiar pain like some Kurt Cobain or Elliot Smith song, I can always go back to the “gourmet” pizza.

Wouldn’t it be nice, in any case? The fountain of youth isn’t drink after all, but food. Or more precisely, not food.

Extremism by temperament, tempered by experience, optimally results in a certain realism. Despite my hyperbole about Ponce de León foraging in Florida for the youth fountain, I’m not looking for miracle grow here.

Instead, I am seeking a big picture that includes exercise, physical therapy, therapeutic medicine and diet. If diet can play a positive, albeit incremental, role in my spine’s wellbeing, then it is welcome at my table.

Thank you to all of you on this site who inspire by your example!

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I had lung congestion for nine months, during which time I was hospitalized twice. Nothing relieved the congestion, and it got bad enough that it was causing heart palpations. I tried the AS low startch diet from this web site. In four days the congestion went away. When I don't do the diet it comes back (and my inflammation rebounds). When I do the diet, it goes away. I'm sold. It also helps my inflammation.

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Just wanted to corroborate the good spirit here on this site with a little research I anecdotally did.

Several of my friends are in medicine. I have spoken to three of them about the diet, and we have reviewed the medical literature concerning it. All are highly credentialed - one is a hematologist-oncologist who researches cancer in the blood at the leading hospital in Boston and teaches on the Harvard Medical faculty, the second is a biochemist and director at the prominent biotech in Boston and the third is a clinical neurologist-oncologist at another area hospital who also trained at Harvard.

I asked each to point out any flaws in the science and anything in the reasoning that appears ridiculous. They all -- especially the biochemist -- said the reasoning is sound and the science is plausible. They said that from what they can see, there has been an inadequate amount of research to prove the science, and it remains conjectural. There is just not enough funding for research.

My personal concern is that AS is the stepchild of arthritis, and what resources are available go to the study of osteoarthritis, rheumatoid arthritis and so forth, with the theory that what is good for the goose is good for the gander, which may not at all be the case, as AS seems to have its own etiology and to link up with IBS and uveitis in ways that osteoarthritis and rheumatoid arthritis do not. AS may well be an autoimmune disease, but in my view it may not be comfortably categorized together with other arthritis at all.

Arthritis (inflammation of the joints) may well be a symptom of several distinct disorders, though the cause of none. Diseases, in my view, should be categorized at the level of the cause, not the symptom. If klebsiella causes both IBS and AS, but not osteoarthritis or RA, then AS and IBS should be grouped as a medical specialty and research made into curing their cause.

Your finger can hurt because you got stung by a hornet or because you hit it with a hammer, but hornets and hammers should not be studied together just because both make the finger hurt!

One of my concerns about drugs that work for AS as well as other forms of “arthritis” is that they are necessarily addressing only the symptom, not the root cause.

In any case -- back to the opinions of the three professionals I spoke to! One of the doctors said, if she were in my shoes, she would try it. Bottom line: nothing to lose, much to gain.

They all said that unless you go overboard on the red meat and dairy (cholesterol)(“a high bacon diet”) there can be no harm, and the diet might actually be good for you quite independently of any impact on the spondylitis. One said that a diet of low starchy vegetables is close to ideal. Cauliflower and broccoli in particular are singled out for plaudits.

I am beginning to want to attach a spiritual karma to my new no starch diet.

To keep kosher you can’t eat pork, or aquatic animals must have scales and fins so you can’t eat shellfish.

A few minutes on Wiki also teaches that if you eat foods that are halal (“halal” being Arabic for “lawful”) and you are Sunni, you can eat all seafood, but the Shia halal diet like the kosher one bans shellfish, with the exception of shrimp, which Shia halal can eat. The halal diet prohibits foods prepared with alcohol, as Muslims do not drink alcohol. Mormons similarly cannot drink alcohol, but they further cannot drink coffee or tea. But Coke is OK, go figure.

According to Wiki, “most major paths of Hinduism hold vegetarianism as an ideal.” The article continues that this is so for three reasons: the principle of nonviolence (ahimsa) should extend to animals; the offering of only “pure” vegetarian food to the deities, to receive back from them blessings including good health; and belief that non-vegetarian food diminishes the spirit and dulls the mind.

The Indian traditional medicine, Ayurveda, prescribes the sattvic diet (“sattva” being Sanskrit for “purity” suggesting the very core of existence or reality), also known as the yoga diet, which - again according to Wiki -- emphasizes yogurt, cheese, butter, honey, and most vegetables except ones like the potato which, they say, is gas-forming.

Buddhists also may practice vegetarianism due to principles of nonviolence.

In Hinduism, a dharma is a person’s individual obligation, calling and practical step toward attaining the ideal. In this way, diet can be a dharma.

I’m already thinking of the no-starch diet as a No Starch Dharma.

A couple of weeks into it now, and it seems to be helping resolve some AS-related immobility issues I have had in my upper back, shoulders and neck for some time, that were there even with Enbrel.

This is a great site. It’s an amazing resource so thank you again.

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In the summer of 2003, at the age of 32, I started having difficulty sleeping through the night. At two or three in the morning, the muscles in my lower back would tighten up. Sometimes an early morning bath helped, but I would normally wake up feeling more tired than before I slept.

A trip to the doctor led to x-rays, some back strengthening exercises, a prescription for Vioxx, and a 14 month wait to see a rheumatologist. The NSAIDs helped, but the exercises usually aggravated the pain.

I started experiencing chest pain, possibly from the inflammation, or the medication. The Vioxx was replaced with Celebrex. The rheumatologist said she couldn't make any sort of diagnosis since my vertebrae looked normal.

Over the next few years the pain worsened, and I started experiencing a constant low grade pain and occasional flare-ups that made movement extremely painful. I didn't want to be dependent on the medication, so I tried massage therapy, physiotherapy, chiropractic treatments, yoga, acupuncture and meditation. None of these led to any lasting relief.

By 2006, every step I took caused the “inexplicable” pain to shoot down my buttocks into one of my legs. I found a job that required less movement and was less stressful, still, maintaining a full-time job was challenging.

By 2008, I had given up hope of recovering. My hands started becoming numb in the morning, and one of my eyes turned bright red and became sensitive to light. I was diagnosed with Raynaud's syndrome and iritis. By this point I was convinced the underlying problem was A/S.

I was seeing a new chiropractor who couldn't understand why the inflammation in my S/I joint kept returning. I told him that I suspected A/S, but it wasn't confirmed. Based on my history and symptoms he agreed and said the problem was in my stomach and suggested a paleo-diet. I was skeptical, but also desperate, so I reluctantly eliminated grains and reduced sugar. This led to a significant improvement. The pain continued, but the flare-ups became less frequent and would settle down more quickly.

A new CT scan revealed sacroiliitis, and after another year on a waiting list, a rheumatologist made the obvious diagnosis. After six years, giving this mysterious pain a name provided an odd sense of relief. It also led me to the KickAS website.

After reading Dr. Ebringer's research about molecular mimicry, and the numerous success stories on KickAS, I bought Carol Sinclair's book and a bottle of iodine. After a few weeks on the NSD I again noticed a significant improvement. At this point I rarely needed NSAIDs, movement was less painful, and the flare-ups became less severe.

After about a year on the diet my progress plateaued. I was no longer taking pain killers, but I was still in some pain most of the time. Stress and major changes in the weather often led to fatigue and a minor flare-up. I was still thrilled with the progress, and being pain free seemed possible.

I read about some people having success by increasing their fat intake (Healing Naturally By Bee - based on the Polish Homo Optimus Diet). For eight months I continued on the NSD diet, but decreased carbs and increased fat. I often felt tired and sluggish eating this way, and after starting to feel occasional bouts of chest pain I decided to stop.

The NSD is still at the heart of my diet, but for the past six months, I have been very conscious about balancing the fats. My basic understanding is that polyunsaturated omega 3 and omega 6 oils lead to the production of anti-inflammatory hormones and an excess of omega 6 oils and saturated fats (some types being worse than others), create pro-inflammatory hormones. The monounsaturated omega 9 oils, like olive oil have a neutral or minimal anti-inflammatory influence.

To apply this, I eat a lot of fatty fish high in omega 3s (lots of herring) and supplement with fish oil. To reduce the omega 6 content, I only cook with olive oil and coconut oil and I try to buy free range / grass fed poultry and beef. Since dairy has a high degree of saturated fat, after a great struggle, I have almost gotten over a whipping cream addiction.

While eliminating starch made the most significant improvements, balancing fats has greatly helped (especially adding fish oil and reducing dairy). The pain is still lurking there, but now I feel that I have more control over it. With more energy from not always fighting the pain, I have been able to move forward in other areas of my life, like starting a family and training for a job I'm better suited for.

Reading about other peoples' experiences and successes with A/S has provided me with some much needed support, guidance and hope; I hope reading my story can also help you see some “light at the end of the tunnel.”

I wish you all the best in your journey to improved health.

Peter Smith

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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

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