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Joined: Oct 2014
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Hi all, I am on low starch diet,would say very low starch and also dairy free. The highest rate of starches I'm eating are almond nuts, carrots and tahini paste for cooking.
I have been doing this for about 3 weeks and feel no better. I have checked supplementation. If it might work for me, does anyone know why it takes time. I thought if one removed the trigger then the problem would improve pretty quickly.

Does anyone know how it actually works in terms of reducing the autoimmune response time wise. I've read the literature on nsd its more that I don't get why some would recommend waiting a number of months?

Thanks all :-)

Last edited by SunnyD1979; 09/26/15 12:52 PM.
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Hm…I wouldn't like hearing this idea if I were you, but what if you try taking out almonds and tahini for a week and see what happens? When I've taken out food triggers, I've often felt better within 3-4 days.

If THAT doesn't help, try using animal fat as your fat source instead of olive/nut/canola/etc oils.

Also, are you using sea salt? In the US, at least, companies are allowed to put cornstarch in commercially-produced table salt to make it pour more smoothly, and they don't have to include it on the ingredients list.


I have Reiter's Syndrome, an HLA-B27 disease similar to AS. Diagnosed 2008. I used Humira and methotrexate until 2012, when I was diagnosed with leiomyosarcoma and given a hysterectomy and a 26% chance of 5-year survival. Cancer-free ever since I stopped taking Humira and methotrexate; trying to trust medicine again. In a mobility scooter since 2013 with joint pain and disease-related stress fractures. Uveitis. Eyes and joints flare whenever I stray from a severely limited diet (NSD+).
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Hi Sunny D!

It took me 6 months to really get ahead of this disease through diet and feel like I was more in control. But I did feel some benefits right away in the first week, especially where my gut was concerned. The bloating, cramping and colitis symptoms were the first see major improvement. So I was super motivated to keep going. I know its a lot harder to stick with it when you don't see any benefits right away.

My suggestion for one last push is to try a short green juice, smoothie, and soup reboot. This means focusing on fresh fruits and veggies juiced, blended, and then simple bone broth soups and soups like my cooling cucumber gazpacho. Maybe try this for a few days over a weekend and see if you notice any added benefit? Focus on drinking lots of water in between "meals" to try and flush out your system, and lemon water with a pinch of pink Himalayan sea salt. The lemon juice is actually alkalizing to the body and the salt is full of minerals, (this lemon drink can be very helpful for re-hydration and detox headaches for those eating a keto diet too). This reboot is a chance to flood your body with nutrients that are "predigested" by juicing/blending for easy digestion. I always feel tons better when I "reboot" like this. I have my favorite starch-free juice, smoothie and soup recipes in my cookbook, and also have a few on my websites. I HIGHLY recommend watching the "Fat, Sick, and Nearly Dead" the first documentary (can be found free online, link below, or a few bucks on amazon) for major inspiration, then you can also find lots of juicy/smoothie recipes from Rebooting with Joe (same guy who made the documentary) online, http://www.fatsickandnearlydead.com/

I want to stress the reboot as a good thing, and not a thing where you feel like you are punishing yourself. More of a "let's nourish my body as much as I possibly can", relax, and dedicate a few days to detox of soaking in hot epsom salt baths, reading good books, and drinking a bounty of fresh greens, veggies, and low starch fruits. The last thing we want a reboot to do is stress you out, so if it feels to daunting just add in one full starch free meal each day, preferably a lunch. Then focus on liquids for dinner and breakfast.

My longest reboot juice fast was 14 days, and oh my I felt AMAZING!! but now I can get a great benefit after just 24 hours to 3 days of juices/smoothies. Check out this blog for an AS reboot too, we were "rebooting" at the same time a few years ago: http://farmerkskitchen.com/ks-reboot/

I do think this diet takes time because we are starving out a whole ecosystem of "bad" gut bacteria and trying to encourage the good guys to come back and flourish. When we get to a point of systemic inflammation in our bodies from AS I believe it takes at least a few months (or longer) to really help our body and cells rebuild as we wipe out the inflammation, and in a sense retrain our bodies and gut bacteria on using these new foods as fuel. The "bad" bacteria and yeasts like candida get awfully angry when they are starved out, but after a few months I was at a whole new place where I CRAVED nutrient dense foods and the site of refined processed pastries and sugars no longer tempted me in the slightest. And it also takes time for out guts to heal, for the "leaky gut" walls to heal back up so they no longer let the bacteria and food particles leak through causing the inflammatory response in our body's. This is how my non-science brain understands it at least!

Also I would try cutting out the carrots, too starchy for me to include in my everyday diet, I only eat sparingly.

Let us know if you start feeling any better, okay? I admire you for giving this diet a good try. I would love to see you get some relief soon!!


I'm now a KICK AS (and Kick IBD) success story!! After going low starch Paleo to heal my gut, I can now eat nearly all starches, grains & foods without inflammation, flare-ups, or pain. I used a modified SCD diet approach (minus dairy! plus cacao ♥). Cheers to healing & thriving again! I blog at http://www.forestandfauna.com/about/
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I wrote a really long reply to this and its not here :-(
Just to say thanks to all for replies. I don't want to lose weight, I'm really small from all autoimmune diseases already and lost loads of weight already.
Is there anyway at all round this whilst having zero starch?? I'm eating lots of avocados which I know are fringe foods. Also I'm eating dark vegan choc and only suspect ingredient is some soy in it.
Going to cut the carrots and tahini paste and nuts for a weekend and juice. In the worst iritis flare I've ever had, steroid drops won't clear it and worried for my sight. Argh.
I use rock salt but have been eating meats that have been salted. It's every where, how frustrating.

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Sorry to hear about the iritis!!

If you add in lots of high carb fruits and add in smoothies, you shouldn't loose much weight. Did you read the link I posted above to Farmer K, they drank smoothies too during their reboot with awesome results. Medjool dates, or any date really have lots of calories, carbs, and good source of potassium and minerals. Fresh or dried figs are great in smothies. Avocado shakes are awesome. Lots of high fat coconut milk. Along with lots of berries, greens, pineapple, cucumber, etc. The main idea is to eat blended predigested foods to give your gut a break, and let your body focus its self on healing versus digestion. If you are having any problems with digestion or low stomach acid I recommend separating the smoothies into high carb for some, and high fat for others. Also these predigested foods are easier for our bodies to digest, hence no food particles left for the bad gut bacteria or Candida to eat farther down the GI tract (especially true when juicing and removing all fiber).

Then to keep this as low stress a possible eat a meal anytime you feel like you aren't getting enough calories. You can also eat meaty stews made with bone broth and pureed veggies you tolerate. Maybe you just do high calorie smoothies for breakfast, soups or fresh salads for lunch, smoothies or my instant ice creams for snacks, green juices for dinner, so its a mini fast overnight.

I hope you are able to get the right medical treatment for your eye too!! Ultimately just do what feels right for your own body. I listen to my own body above and beyond the input I receive from anyone else. If juices and smoothies don't agree with you, stop and move on to the next therapy, okay?



I'm now a KICK AS (and Kick IBD) success story!! After going low starch Paleo to heal my gut, I can now eat nearly all starches, grains & foods without inflammation, flare-ups, or pain. I used a modified SCD diet approach (minus dairy! plus cacao ♥). Cheers to healing & thriving again! I blog at http://www.forestandfauna.com/about/
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I just read your other post in the main forum regarding coming off Enbrel with problems and the NSAIDS also contributing to gut problems. Many of us blame NSAIDS for creating leaky gut, IBS, IBD in our bodies. I took NSAIDS for years before I too ended up with hellish IBS and eventually colitis. I wish I could offer more support!! Healing a leaky gut serious takes time and dedication, but so many of us have done it!! I just think for your case you need to factor in the set backs of Enbrel and NSAIDS when you place a time line on healing, in reference to your question that started this post on how long it takes.

I still think the diet can be a lifesaver, but I would honestly expect it to really take some time. Hopefully you start to see progress in the next couple weeks, but I wouldn't give up if it ends up taking many months, and even a full year to really heal your body.

I also recommend checking out the SCD diet and reading "Breaking the Vicious Cycle" as it is a wonderful program and you will find many on it in a very similar situation. Many end up on SCD as an alternative to having their colon removed from severe Crohns and colitis. There is a wonderful support forum for SCD in the Yahoo Groups called BTVC (Breaking the Vicious Cycle). Note though with SCD I recommend avoiding the homemade 24 hour ferment yogurt with cows milk, and using either coconut milk (ideally!) or goat or sheep milk if you make your own yogurt with the program, or play it safe and try fermented sauerkraut first. Many with AS have issues with regular dairy, as stated on the Food Guide list on Kickas. And of course I recommend modifying SCD to omit the starchy squash, cooked carrots, etc. My diet and cookbook is based on my modified starch-free version of SCD.

SCD website: http://www.breakingtheviciouscycle.info/

There is also the GAPS diet, which is based off of SCD, so quite similar, but it is a newer version of the diet, as SCD originated 100 years ago with Dr. Haas, and later evolved with biochemist Elaine Gottschall. My friend and fellow cookbook author Megan has had tremendous results in healing her body with GAPS. I featured a recipe and review of Megan's new cookbook on my website this week. Five years ago Megan was told by her doctor to prepare for death as her body was overrun with severe illness and inflammation, and she wasn't even 40 years old yet, and there she was preparing her final goodbyes for her husband and kids as she the doctor said she did not have much time left to live. She found the GAPS diet and is a healthy inspiration today. I think those of us hit the hardest by disease who find healing through diet are the ones who are inspired to write cookbooks and share what we have learned after amazing ourselves with the results. Now she doesn't have AS so she includes more starches in her cookbook, but in the grand scheme of things our diets are quite similar.More on Megan: http://www.forestandfauna.com/chocolate-...-and-loving-it/

You are in my thoughts! I can't wait to hear back in a few weeks when you start seeing results!! xx


I'm now a KICK AS (and Kick IBD) success story!! After going low starch Paleo to heal my gut, I can now eat nearly all starches, grains & foods without inflammation, flare-ups, or pain. I used a modified SCD diet approach (minus dairy! plus cacao ♥). Cheers to healing & thriving again! I blog at http://www.forestandfauna.com/about/
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When I had to go off Humira all at once, I had terrible eye flares. They just went on and on for months, and required both steroid drops and dilating drops to finally get under control. It turns out that you're supposed to taper off of biologic drugs very, very slowly. Going off Enbrel, you're putting extraordinary strain on your immune system! But the good news is, once your body adjusts to life without Enbrel, your eye situation should stabilize, provided you aren't constantly re-triggering it.

I don't know about the preserved meats in your diet-- maybe the salt has starch, or maybe there are other preservatives in there that are triggering. Or it might just be the going-off-Enbrel situation. I'm so sorry you're going through this.

Bettyrawker, it's great to read your suggestions!

Best,

EA


I have Reiter's Syndrome, an HLA-B27 disease similar to AS. Diagnosed 2008. I used Humira and methotrexate until 2012, when I was diagnosed with leiomyosarcoma and given a hysterectomy and a 26% chance of 5-year survival. Cancer-free ever since I stopped taking Humira and methotrexate; trying to trust medicine again. In a mobility scooter since 2013 with joint pain and disease-related stress fractures. Uveitis. Eyes and joints flare whenever I stray from a severely limited diet (NSD+).
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Thanks Betty, really helpful info. I'm eating the avocados, dates, smoothies and chiken alot to try keel up the calories. It hasn't helped maintaining weight having the toilet issues.
Ellie, I think you must be right. As soon as it came out my system, everything pounced on me, worst AS and other symptoms I've ever had.
I'm on steroid drops every hour at the moment. Really hope it calms down soon.
Betty, tested all the lovely almond flour pancakes and they didn't turn black so have eaten those for some bulking food.

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I hope it calms down too. Every hour, jeez. There is a steroidal eye drop called "Durazol" in the US, also called "predinsone acetate," that is more powerful than the others, which means you can take it less frequently. Have you asked your ophthalmologist if you're on the strongest drops s/he has to offer?

When I had my massive post-Humira flareup, I wondered if I was sensitive to ingredients in the Durazol and switched to a different drop. It turned out to be less than half as strong as the Durazol, and my eye got incredibly puffy and developed a "pupillary membrane," through which I could see nothing until the docs put me back on the Durazol. So whatever you do right now, don't go down on the drops without medical supervision!

Hang in there, and keep breathing...


I have Reiter's Syndrome, an HLA-B27 disease similar to AS. Diagnosed 2008. I used Humira and methotrexate until 2012, when I was diagnosed with leiomyosarcoma and given a hysterectomy and a 26% chance of 5-year survival. Cancer-free ever since I stopped taking Humira and methotrexate; trying to trust medicine again. In a mobility scooter since 2013 with joint pain and disease-related stress fractures. Uveitis. Eyes and joints flare whenever I stray from a severely limited diet (NSD+).

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