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#517604 - 09/18/17 08:29 AM Re: SUCCESS [Re: Dotyisle]
SalomonDuggar Offline

Registered: 08/11/17
Posts: 8
Loc: Germany
A starch free and low animal diet lowered my pain levels by 95%. I mostly eat fruit and non starchy vergetbales, some fat (oils / olives) and a bit meat/fish. Unfortunatelly a starch free high meat diet was not sufficient for feeling better.

Since 2007 I have backpain to varying degrees. My achilles tendon inflamed the first time 2009 so I wasn't able to walk for weveral weeks. 2012 I got severe backpain which prevented me from sleeping. After 2-3 weeks with extreme pain and maybe 1-2 hours sleep I was pretty f*ed up. On doctor suspected AS 2012, due to HLB27 and high inflammation levels in my blood. AS was finally diagnosed 2015.

FIRST DIET EXPERIMENTS - cutting out the worst garbage:
Due to my bad health 2012 I searched for AS (in German Morbus Bechterew) on youtube found one person who ditched animal products, bread etc. He ate fruit, vegetables, green smoothies, sprouts occasionally a baked sweet patato. Since I felt pretty miserable I was willing to change my life to feel better. I found more people on youtube which changed their diet, due to various health problems. Some went vegan. Some went raw. So I tried to eat as healthy as possible. No bread, no cakes, no animal products. Insead I ate green smoothies, fruits (including bananas), nuts, sprouts. My health improved significantly so my rheumatologist concluded that I don't have AS since my inflammation levels were low again. After maybe a year or two, I still ate a lot of vegetable and fruit but also fried eggplant, potatoes, chickpeas etc. I had only very low levels of backpain.

After two very stressful years in a new job my health deteriorated sigifinificantly by the end of 2015. I could neither sleep nor walk, due to raising pain levels. Beginning of 2016 AS was diagnosed. After reading about the side affects of the proposed medications I refused most of it. I searched again for solutions on the internet. I found several diets that promised to improve health (e.g. London AS-diet, Autoimmune Protokoll (AIP), GAPS, SCD, 30 days autoimmun reset, elimination diet of Paddison, elimination diet of Dr. Mcdougall, Whals, Nutrian Diet of Dr. Fuhrman, Raw till 4, Westonaprice, For every diet you can find some reviews that some people get better and some did not. Diet was definetly a factor for healh since it already worked in the past and also I felt better painwise if I didn't eat. But which diet should I choose?

1.) MEAT&OIL&VEGETABLE: Since AIP sounded pretty well researched to me, I started with AIP. However I restricted this diet further and avoided starch since the starch&Klebsiella-theory also sounded realistic. I ate meat (game, grass fed beef, wild salomon, chicken), oils (coconut, flax and olive) and low starch vegetables& sauerkraut. I also avoided furit (except berries)since eating high amounts of fructose increased existing inflamations. Unfortunatelly health become worse and worse. I cold not walk, sleep or lift up my son. All tendons and joints hurt. The joints at my hands become more and more swollen every day.
2.) OIL&VEGETABLE: After 4 months I cut out all animal products. My caloric content was derived almost entirely of coconut oil and olive oil, which I added to my starch-free vegetables. My pain levels became much better during this 6 weeks. However I was always low energy since my caloric intake was only around 1600 calories a day. I could not increase my caloric intake since eating significantly more than 150g of Oil a day was too much for my digestion. So I tried another diet strategy again.
3.) STARCH&VEGETABLE After a 3-day fast I reached the lowest pain levels I since maybe half a year. I tried to introduce some starch in accordance to some elimination diet mentiones above. I came to the conclusion boiled white rice and steames sweet patato would be the least bad option of starch. So I ate leavy green vegetables plus high amounts of rice or sweet potatoes for almost two weeks. My back became worse each day until I was not able to sleep any more and my disks sliped while trying to lie into my bed. So the elimination diet did not work and I could confirm starch as one source that cuases me pain.
4.) FRUIT&VEGETABLE In my folloging experimentI tried a diet constisting mostly of raw and dried fruit as well asraw/steamed/fried starch-free vegetable with a lot of leavy green vegetables. My pain level was a lot lower than during the starch&vegetable experiment but worse than during the oil&vegetable time (since I atevery ripe bananas during the whole winter).
Last winter I eate maybe 1Kg of peeled very very ripe banana blended with some berries for breakfast. For lunch I had organic salad blended with berries and dates or a meal of oranges (maybe 2Kg pealed). For dinner I have cooked (non-starchy) food. Even very very ripe banana sometimes contains some starch, which leads to backpain. However the level of backpain is lower than in case I would eat more starchy food bread/beans or potatoes. If I have low level of inflammation by eating bananas then I try to restrict my intake of omega 6 foods.
During summer my diet is less difficult. The fruit and vegetable diet workes very well in summer. During day I eat lots of fruit (melon / peaches / nectarines / grapes / diet dates and figs). For dinner I eat around high amounts of vegetable (e.g. asparagus, zucchini, brussel sprouts, cabbage) with some raw dried olives, some oil, some spices, some pickeled stuff. I eat only maybe 400g of fish/meat/eggs a week. Every time I eat animal products my joint hurt somewhat.
One of my best times in terms of pain was a vacation to Thailand. Here you have plenty of ripe tasty fruits available (Mango, Jackfruit, Durian). Here you don't have to worry about starch.

I'm open for questions and comments

#517613 - 09/22/17 09:59 AM Re: SUCCESS [Re: Dotyisle]
jackson Offline

Registered: 04/13/17
Posts: 22
With AIP way of eating I was pain free for the time I tried it but very stiff necked with forward leaning posture tendencies. Blood work during this time showed a sed rate of 22 and CRP of 2. Pretty close to normal ranges.

Switched to a whole food/plant based style. I wasn't worried about starchy fruits or veggies or even non gluten grains, so things like rice, quinoa, and potatoes were green lighted. With or without AS, this way of eating agrees with me. I should note I'm not vegan, as I will partake of seafood on weekends. Blood work on this diet: sed rate dropped to 4; CRP was .5. I was elated. My neck began to loosen tremendously and posture was straight. I could really mask my mobility limitations quite well. I started this way of eating about 5 months ago as it made the most sense to me in regards to healing leaky gut and overall health.

A little over a month ago weird pains came back to my lower back. I tried to shake it off because of the dread of the truth. A week later I was in full blown flare up mode, the likes of which I haven't felt in probably 4-5 years. I forgot how horrible they were. It's just now starting to vanish. Normally I'm a staunch anti-med type, but I gladly took a round of prednisone (I begged for) which I credit for getting me out of the woods.

After reflecting about things while I was in the throes and reading a lot, I realized I'd been on a run of eating a ton of nightshades in the days before and during the flare up. I also decided I needed to give up my coffee and LaCroix habit to go easy on the gut. I plan to reintroduce nightshades eventually because I'm sick of constantly deleting food options. I'm also sick of constantly evaluating diet.

I've never tried the no starch diet and do not intend to. I'm plenty thin enough and high maintenance as it is.

In conclusion, I don't know what to think anymore. Like I previously typed, I love the whole food plant base diet, but I am dubious to all the miracle cure and disease reversal claims promised by those who follow it. I want to believe I can control AS with diet and I've certainly tried as many things as you have, but I'm starting to believe the doctors I've tried to defy and am open to considering meds. I'm going to Mayo in a couple of weeks and I know the end result will probably be to prescribe me with a biologic. This time I'm on board.

I am also grateful for last night's great sleep and today's pretty good outlook. Good luck to everyone else.

#517614 - 09/23/17 01:02 AM Re: SUCCESS [Re: jackson]
DragonSlayer Offline
AS Czar

Registered: 09/05/01
Posts: 6147
Loc: Reno or SFLU Philippines
Well, jackson

My Latin teacher used to say that "If you cannot be a shining example, at least be a dire warning."

I am certainly that warning; it is an august responsibility.

Good Luck,
Important AS Resources

Professor Ebringer: On Diet and AS;

RED ARROW --> Philippines

#517678 - 10/03/17 07:11 AM Re: SUCCESS [Re: Dotyisle]
Bel Offline

Registered: 12/31/12
Posts: 57
It would be helpful if people only use this thread for success stories

There is a lot of confusing non success stuff on here.

Ideally a moderator would remove off topic posts ... but it's not my call.

Moderator; please feel free to remove this post also.

#518248 - 02/13/18 12:42 PM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
kimberlyjo Offline

Registered: 02/13/18
Posts: 3
I am a new diagnosed Anky ( hate this word right now)

Although I am sure that I have had it for at least 20 years now in a milder form, has suddenly progressed to much worse.

And if it weren't for a fluke, I wouldn't have been diagnosed last week.

It took 20 years of me complaining or just dealing with things in my body that "weren't right" and all my doctors blamed all my symptoms on stress.

Knowing that my symptoms must be related to inflammation somehow, I changed my diet in 2010 and stayed on the diet for 2.5 years. During those years, all my symptoms went away and I lost 35 pounds. This diet is really strict, only meat and veggies and some fruit and nuts.

After moving to NYC, my diet slowly changed back to the old.

I thought my body was healed and detoxed and in the last two years it had changed to a more free for all kind of diet and I was drinking wine, living life the way most americans do. Eating chips, and starch, and not much but some sugar. But not loading up on greens and not really eating the right nutrition. It was a slow progression, I me regression back to that old way of eating, but man was it good. haha. I didn't hold back. I ate ice cream, cake, whatever else.

I always knew I had inflammation problems and when I chose to follow the SCD diet as much as I could I saw great healing, but at that time I didn't realize it would be such a terrible diagnosis or I would have never gotten so off that original diet.

I am wanting to ask all of you that have great diet success stories, to see if anyone has also got a new MRI a few years into the diet to show less damage or halt of progression. Trying to decide, should I stick with the starch free diet alone and wait for some time longer, or should I try Cosentyx with diet and risk all the side effects?

HELP. I know stress is a cause of inflammation, but I am stressing over this decision.

I have read a ton of your very promising success with diet stories, thank you for these, I needed to read them something awful this morning. I am still in the waking up panicking stage.

Thank you. signed determined and nervous and scared.

#518325 - 03/01/18 03:19 PM Re: No/Low Starch Diet Success Stories [Re: kimberlyjo]
gilliganjo Offline

Registered: 10/17/17
Posts: 4
It doesn’t look like you’ve gotten a response. I haven’t been on here much due to being on extended vacations, etc. unfortunately I don’t have a ton of experience. I recently started the NSD diet. My pain has decreased so much. It’s still so new that I don’t know that I can say that it’s the diet or coincidence so I’m determined to stick to it and see if it continues to start so good. I have opted not to take any meds yet due to breastfeeding and planning to try to get pregnant again soon, but may consider it once I am done with breastfeeding my last child (the next one) if I haven’t put this stinker into complete remission. I have been following a semi-Keto diet. The thing is, I know that carbs are important and starchy veggies too, so I don’t want to avoid such good things for too long. I don’t want to ruin my body trying to save it! Haha! So we’ll see!!!

How have you been doing and what did you decide to do?

#518327 - 03/02/18 06:39 AM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
MattR Offline

Registered: 11/29/17
Posts: 5
Hi Everyone,

I feel I am a living embodiment of the power of the starch free diet.

I started having AS symptoms when I was 19. By 27, I was basically crippled. I was really struggling to find any joy in life. I could no longer easily even get to work (getting out of bed, into the car was bringing me to tears), sports were gone, and I couldn't even work on my project Jeep anymore.

I got really desperate and started looking at diets. I had never heard of the gut-connection to AS, and I had just been told to take aleve (8x per day!) by my doctor, and to do physical therapy. Both of these helped, but eventually, they lost their effectiveness as well.

I started the low-starch diet based on Carol Sinclair's book. I found it when searching on Amazon for AS diet books. It worked great at first and then the pain returned after around a month. I then realized I needed to cut way down on sugar. That worked great for a while too, and then the pain returned. After more research on the Klebsiella Bacteria, I realized that I must still have been feeding it somehow, and that for some reason I was more sensitive that others.

I am now on a zero-starch, very low sugar diet. I don't eat fruits, or anything with large amounts of natural sugar (even broccoli has sugar, but not enough to bother me), and I completely avoid anything with starch, or that may contain starch. I also cut out any source of casein protein (cheese was also triggering my symptoms, and even very low sugar cheeses). Reading about casein protein sensitivity here led me to cut this out.

It took me 6 months to really "figure out" this diet, and now I've been on it for 2 full years. I would say that my pain is 95% gone.

Initially, on the diet, I used to still have a lot of pains when I would participate in high impact exercise, sports. My physical therapist suspected my L5 disc was leaking onto my sciatic nerve root, wreaking havoc on my muscles and nerves. Things like skiing would send my back muscles into spasm and cripple me.

I feel like I have significantly repaired a lot of the damage that may have been caused by AS, though I've never had an MRI (Doctors told me it was unlikely to change my treatment plan, and that it would only make sense with late-progression of the disease)

I feel that I have now 100% restored my mobility and ability to participate in activities I once thought I'd never be able to do again. This diet really gave me my life back and I am extremely thankful for all of the research that was done on this topic that led me to find this relief!

Also, this is essentially a body-builder's diet, and I'm now also in the best shape in my life. I consume a lot of fats and proteins, and for a while was testing myself regularly for ketones, so what I'm doing is definitely keeping me in ketosis.

#518329 - 03/02/18 06:58 AM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]

As someone who has no belief in any sort of special diet for A.S. I congratulate you with this Matt. As someone said "as long as it works for you"

#518340 - 03/04/18 04:16 AM Re: No/Low Starch Diet Success Stories [Re: Dotyisle]
Robin_H Offline

Registered: 09/13/15
Posts: 300
Loc: Central Canada
Yep Frederick,

*** there is no ideal diet for humans, even though this person says that there is based on years of study.. it is a good theory

***** However this person gives empirical evidence that each person has to find what works for them and the time is coming that we can be more scientific about it.

Enjoy all!
HLA-B27 neg, vague AS symptoms in 20s and early 30s
1993:fibromyalgia (age 25)
2013.07:Reverse blockage in a SCUBA accident
2013.08:Scratched by a sick cat
2013.09:Strange sore throat then meningitis
2014:Chronic inflammation at the base of the skull
2014 to early 2015:excess NSAID use developed complete axial inflammation, included psoriasis
NSD helped well and but was not perfect
2018.07: weak +'ve tests for borrelia, babesia, bartonella and mycoplasma pneumonia using Armin Lab, ANA=equivocal

#518503 - 03/25/18 06:33 PM Re: No/Low Starch Diet Success Stories [Re: MattR]
Mar2018 Offline

Registered: 03/21/18
Posts: 1
Oi MattR. Gostaria de fazer a dieta livre de amido restrita. Somente proteína, gordura e vegetais. Mas tenho tido problemas de constipação intestinal. Uma alternativa seria incluir frutas pois tem fibras. Mas tenho problemas com frutose. Como você lida com isso? Att Márcia.c.s.a

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