banners
Kickas Main Page | Rights and Responsibilities | Donate to Kickas
Kickas Links
·HOME
·Forums Main Index
·Register!
MEDICAL CENTRE
·Medicine Contract
·AS Patient Guidebook
·Pain Map
·Disease Modification
·Ask your doctor
·AS and RA Papers
·AS Acronyms
DIET CENTRE
·London AS Diet
·Molecular Mimicry
·AS Dietary Primer
·AS Food Guide
SUPPORT CENTRE
·In Memorium
·KickAS Stories
·KickAS Banners
·Donations
Forum Stats
13,358 Registered Members
28 Forums
43,663 Topics
518,019 Posts

Most users ever online: 1,568 @ 06/29/16 03:25 PM
Newest Members
NZMatt, CGreen, ZenCaterpillar, mydawnie, Parthu
13358 Registered Users
KickAs Team
Administrator/owner:
John (Dragonslayer)
Administrator:
Melinda (mig)
WebAdmin:
Timo (Timo)
Administrator:
Brad (wolverinefan)

Moderators:
- Tim (Dotyisle)
- Chelsea (Kiwi)
- Megan (Megan)
- Wendy (WendyR)
- John (Cheerful)
- Chris (fyrfytr187)

QR Code
If you want to use this QR code (Quick Response code) just save the image and paste it where you want. You can even print it and use it that way. Coffee cups, T-Shirts etc would all be good for the QR code.
Page 1 of 4 1 2 3 4 >
Topic Options
#518098 - 01/20/18 06:19 PM One year of NSD
Kellybells Offline
First_Degree_AS_Kicker

Registered: 01/21/17
Posts: 177
Loc: Canada
Where I started

I found my way here a year ago. I had just seen a rheumatologist about debilitating pain, swelling, and stiffness in the finger joints of both hands. It had started 10 months earlier, a few months after hurting my right hand in a bike accident. It got so bad my hands were unusable every morning. And it was getting worse, with stiffness and swelling lasting longer each day.

While waiting for test results, I went searching. When I learned about the NSD a light bulb went on. I had already given up dairy and grains, having linked them to my rosacea and severe knee arthritis. But I had always felt I was missing something. I would still have painful days that I was sure were food-related but I could never pick out the pattern. I don't think I would have ever figured out starch on my own.

I started NSD the next day. Within days I felt better. And 2 weeks later, my finger stiffness and swelling were almost gone. And so were a bunch of other symptoms I had thought unrelated: sharp tendon pains in my knee and groin, pain in my neck and upper back that often came with brutal headaches, throbbing pain in my left hip, and overall body stiffness, especially in my spine. My skin improved, my mood improved, my energy levels soared. It was an amazing turnaround in the dead of winter, when i usually feel my worst.

The early days: very low starch tolerance


Still, the first month was tough. Finding a truly starch free diet was hard. Apple juice, nuts,  mushrooms, carrots, collards, cabbage - these all tripped me up at first. I would think I'd had a good day, only to wake the next morning in pain. I was frustrated. I lost weight I didn't want to lose. But I eventually landed on a base diet of eggs, meat, zucchini, and leafy greens like spinach and chicory, and slowly added from there.

I used www.cronometer.com to track my daily starch intake. I quickly discovered that I could eat up to 2 grams of starch and generally be ok. But starch levels can vary, so I took iodine everywhere. 

After a really bad week of accidental starching, I tried a short water fast. I definitely felt better. But I hated every minute of it. Definitely not for me.

The protocol: 'weed and seed'


After a month or two, I got the hang of it. Pain levels hit 0-1. But I wanted lasting change, so I started a 'weed and seed' protocol: 6-8 weeks of proibiotics alternating with 1-2 weeks of herbal antibiotics (berberine, goldenseal, oregano oil, peppermint oil, etc.). I don't tolerate regular probiotics - I break out and get constipated - so I take soil-based probiotic like Prescript-Assist.

After several rounds and faithful NSD, I now find I can tolerate a little more starch. If I eat a single high starch meal, it's only a mild reaction, if that. And now I can regularly eat very low starch foods, like carrots and winter squash, which had previously been a problem. My tolerance is up to about 5 grams a day now - a modest improvement but one that gives me many, many more choices.

Sticking with it

I've read enough success stories to believe that starch tolerance can improve with strict NSD. I want to be that person. Someday.

In the meantime, my weak spot is Christmas, and this year was no exception. Cheese, crackers,  bread, cookies: these dominate my holiday landscape, especially at work. So like most years, I indulged. I was in major pain. And I have not bounced back quickly. I've been back on a strict NSD for weeks now, and while my pain is back down to a 1-2 most days, it's not gone. My finger joints still hurt to the touch. My neck pain and headaches persist. But I'm not worried. It's amazing knowing that I can control this. A few more weeks and I expect I'll be my usual 0-1, mostly pain free state.

Despite this gleeful leap off the wagon, I'm not back to where I started one year ago. My pain is a ghost of what it used to be. And my stable of starch-free recipes (which I will continue to post) is growing. I eat a healthy, balanced diet, and I'm able to exercise more, and longer, than before I started.

I continue to follow my protocol. I've been taking gelatin lately to undo the damage I did during the holidays. Otherwise, I take no meds or supplements, except for a very occasional NSAID for my worst headaches.

I'm really happy with my progress and where I'm at. NSD has been a life changer. My sincere thanks to everyone here at KickAS for making this possible. I am eternally grateful for your insight, advice and support.
_________________________
Suspected USpA. HLA B27, xray, u/sound, blood tests all -ve. Ancient history of plantar fasciitis, SI joint pain, knee arthritis. Recent history of tendinitis, neck pain, debilitating finger pain and stiffness (especially mornings). No diagnosis, no meds.

2010 - stopped eating dairy
2012 - stopped eating wheat
2014 - stopped eating all grains
Jan 2017 - discovered NSD - 98% improvement in symptoms, continually amazed by my results, wish I'd found kickAS sooner

Top
#518099 - 01/20/18 06:40 PM Re: One year of NSD [Re: Kellybells]
mulehound Offline
Commanding_AS_Kicker

Registered: 04/27/09
Posts: 697
Loc: USA state of Utah
I can totally relate to everything you said. I stray now and then thinking I am now normal and body reminds me that I am not. Way to go does my heart good to see your success. This place saved me in more ways than one.
ETTE
Darrel

Top
#518100 - 01/20/18 06:53 PM Re: One year of NSD [Re: Kellybells]
Robin_H Offline
Third_Degree_AS_Kicker

Registered: 09/13/15
Posts: 292
Loc: Central Canada
Kellybells,...

thanks for sharing. Your pain descriptions and duration sound similar to mine and so I have hope. I just lack the discipline to eliminate nuts and coffee. Yesterday I also had NY cheese cake and Hot and Dry Noodles but the effects are rather dull, which is a good sign that the gut is slowly getting stronger. I just ate the last bit of nuts in my house (again).

My gut tells me (no pun intended) that if I have the patience to stick to strict NSD for just a month then my resolve will be even stronger because of the sense of benefits. Sadly I want instant gratification from a pill.

Speaking of which, this poop/fecal organization might be of help.
https://www.openbiome.org/

We must endeavor to get a rich microflora that allows us to eat most anything without fear just for the sake of long term health. The NSD diet is probably too restricted for the long-term and not contributing to a robust neuro-immune system.

Where are you posting your recipes? Without starch I get hungry fast or just don't loose my cravings for carbs. Drenching my steamed vegetables with butter helps satisfy me.

Thanks again,
Kevin
_________________________
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

Top
#518105 - 01/22/18 03:05 PM Re: One year of NSD [Re: Kellybells]
Exacta Offline
Active_Member

Registered: 12/12/16
Posts: 54
Appreciate the journal. Those indulgences are not worth it. It's often not as easy as you think to get back to 0 pain once you are flared.

Top
#518107 - 01/23/18 05:33 AM Re: One year of NSD [Re: Exacta]
Frederick
Unregistered


Originally Posted By Exacta


It's often not as easy as you think to get back to 0 pain once you are flared.


NSD or not it is never easy to get yourself back to 0 pain after a A.S. flare up. That is more to do with the disease than whatever diet you are on.

Top
#518109 - 01/23/18 08:06 PM Re: One year of NSD [Re: Kellybells]
Kellybells Offline
First_Degree_AS_Kicker

Registered: 01/21/17
Posts: 177
Loc: Canada
Thanks guys. NSD is a lonely road. My partner, who also has food sensitivities (he eats low FODMAPS for IBS) is really supportive and accommodating, but everyone else in my life has trouble wrapping their head around it. Team lunches, work meetings, dinners out with friends are all really hard. I feel really lucky to have this forum.

As for Christmas, I confess I did it with eyes wide open! I knew what I was doing, what the cost would be, and did it anyways....each day off the wagon was like watching my own slow motion train wreck, except it was also delicious.

Today was a 1, so I'm optimistic I'll be through this soon. But I won't be in a hurry to do this again, at least not too soon.

I'm curious: what's the longest you've gone without falling off the wagon?

Robin: there's a recipe forum on KickAS that I've started posting to. I've only posted 2 so far but I have others in the pipeline, coming soon.
_________________________
Suspected USpA. HLA B27, xray, u/sound, blood tests all -ve. Ancient history of plantar fasciitis, SI joint pain, knee arthritis. Recent history of tendinitis, neck pain, debilitating finger pain and stiffness (especially mornings). No diagnosis, no meds.

2010 - stopped eating dairy
2012 - stopped eating wheat
2014 - stopped eating all grains
Jan 2017 - discovered NSD - 98% improvement in symptoms, continually amazed by my results, wish I'd found kickAS sooner

Top
#518111 - 01/23/18 09:21 PM Re: One year of NSD [Re: Kellybells]
ranger7 Offline
Member

Registered: 02/13/17
Posts: 37
Kellybells,

I’ve been on NSD for a year now and feel much better but still have gut related issues. Bloating and constipation is constant - probiotics make me even more constipated, seems like you had the same issue. I tried Natren, GutPro and bunch of other ones. Are the prescript assist probiotics better? I need to do something and those are ones I didn’t try yet. Any side effect from using them?

Thank you.


Edited by ranger7 (01/23/18 09:22 PM)

Top
#518113 - 01/24/18 08:12 AM Re: One year of NSD [Re: ranger7]
Robin_H Offline
Third_Degree_AS_Kicker

Registered: 09/13/15
Posts: 292
Loc: Central Canada
Hello ranger7:

Try adding magnesium supplements. Depending on the dose size and chemical form they can loosen up stools.

I think that coffee is a barrier to my gut healing. But if I don't have two cups in the morning then I am constipated. My body has a learned ritual that keeps me hooked. Caffeine is a signaling molecule to my but (with news paper in hand). Some rituals are religions.

Proboitics is regular in my diet (no pun intended) but I have recently started trying bentonite clay to help heal the gut. The FDA requires manufacturers to put warnings on them to not eat it. However there is a "food grade" version but that might mean that there are simply additives to make it mix well with water; pure bentonite clay will not mix with water. The pros, cons and well settled facts about bentonie clay are for another thread.

Hope this helps
_________________________
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

Top
#518114 - 01/24/18 08:22 AM Re: One year of NSD [Re: Kellybells]
Robin_H Offline
Third_Degree_AS_Kicker

Registered: 09/13/15
Posts: 292
Loc: Central Canada
I just want to add or ask...

Is our diet too restrictive and hence reducing the variety of species in our gut and hence reducing the robustness and tolerance of our immune system?

Could we be in a state like a new born baby that needs to sample the world to teach its gut and immune system what is good and bad?

All that being said I recall something being said about babies having stem cells that allow them to build that robustness in their immune system. As adults have we lost that stem cell ability to relearn that robustness?

Evidence shows that fasting triggers stem cells in the pancreas to produce new cells that can produce the enzymes to digest sugars. Can fasting do the same for neurological, immunological and other cells related to the gut?

Are there people out there that have found that monthly fasting increases their starch and food tolerances? Are there people out there that never miss a meal and seem to be not improving?

If you have answers to these questions then perhaps new subject threads would be best.

Thanks
Kevin
_________________________
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

Top
#518116 - 01/24/18 11:20 AM Re: One year of NSD [Re: ranger7]
Kellybells Offline
First_Degree_AS_Kicker

Registered: 01/21/17
Posts: 177
Loc: Canada
Originally Posted By ranger7
I’ve been on NSD for a year now and feel much better but still have gut related issues. Bloating and constipation is constant - probiotics make me even more constipated, seems like you had the same issue. I tried Natren, GutPro and bunch of other ones. Are the prescript assist probiotics better? I need to do something and those are ones I didn’t try yet. Any side effect from using them?

The Prescript Assist has been really, really good for me - I'm more regular and my skin is clearer. Total opposite of how regular acidophilus probiotics make me feel. The only side effect is to my disposable income - they are pricy and I take two a day.

Apparently my reaction to acidophilus probiotics is not uncommon among people who have SIBO (small intestinal bacterial overgrowth), which is strongly linked to constipation and rosacea. I've often wondered if SIBO is also a factor in my SpA symptoms. In the end, the treatment for SIBO is similar to the 'weed and seed' protocol I'm following, so I haven't pursued it further. But I'd be curious to hear from anyone else who has.

Another approach for constipation, and especially for those who also experience bloating, is a newish supplement called Atrantil which specifically targets the methane-producing species that seem to be the culprit. I haven't tried it but I know two people who have had resolved lifelong issues after using it. https://kennethbrownmd.com/atrantil-bloating-relief/

Another supplement that I haven't tried but have also heard good things about for constipation is sodium butyrate.

If you're not having any luck with probiotics, these might be options.
_________________________
Suspected USpA. HLA B27, xray, u/sound, blood tests all -ve. Ancient history of plantar fasciitis, SI joint pain, knee arthritis. Recent history of tendinitis, neck pain, debilitating finger pain and stiffness (especially mornings). No diagnosis, no meds.

2010 - stopped eating dairy
2012 - stopped eating wheat
2014 - stopped eating all grains
Jan 2017 - discovered NSD - 98% improvement in symptoms, continually amazed by my results, wish I'd found kickAS sooner

Top
Page 1 of 4 1 2 3 4 >

Moderator:  Dotyisle, Kiwi, Moderator 
Who's Online
0 registered (), 84 Guests and 4 Spiders online.
Key: Admin, Global Mod, Mod
Recent Posts
NSD for non hlab27 sufferers
by NZMatt
08/11/19 11:22 PM
Success at last finally found my problem foods by
by L33
07/30/19 11:44 PM
Enbrel Users
by JamesF
07/21/19 01:20 PM
Autoimmune Paleo Protocol or 3 day Apple Fast?
by Verona
07/16/19 05:44 PM
LRA - Lymphocyte Response Assay
by Hollingsworth
07/13/19 12:51 PM
Biologic complications
by Luvnlife
07/05/19 09:20 AM
CBD OIL
by Deborah
06/27/19 10:32 PM
(Views)Popular Topics
"FITNESS" TEAM! - All Physical Activity & Sports 46,958,401
hmmm 2,320,793
Has anyone had Pedicle subtraction Osteotomy ? 1,944,988
What to do about healthcare? Can it be fixed? 1,318,767
User names revisited 1,057,294
A.S and beds, What do you find best? 1,001,261
Medicinal Marijuana 978,227
OMG!!!! 918,457
No/Low Starch Diet Success Stories 728,174
THE STARCH CONTENT OF FOODS - THE LIST 483,748