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#517267 - 06/10/17 10:34 PM NSD ineffective?
fodmap Offline
New_Member

Registered: 04/25/17
Posts: 2
Loc: UK
I've been following a NSD for about one month and I've seen zero improvement to my pain and symptoms. I think I'm not going to be one of the lucky ones who can control AS with diet. I've got a bottle of iodine to check starch content, so I know I'm doing it properly, unless the starch in the painkillers Naproxen and Ibuprofen is sufficient to mess it up?

I've got such bad pain in my shoulders and neck - it's excruciating to pull a t-shirt over my head, and finding a comfortable position to sleep is nigh impossible.

I've had an as yet undiagnosed problem with my intestines for the last four months - until that's resolved my rheumatologist won't prescribe me a biologic (probably Etanercept as I took that once before several years ago) which I'm desperate to start to hopefully alleviate this pain.

Does anyone have any pearls of wisdom to share?

Thanks in advance.


Edited by fodmap (06/10/17 10:49 PM)
_________________________
47 year old male. Diagnosed with AS at age 28. For most part never took medication except for Etanercept for 8 month period in 2006 which seemed to put it in remission. Now suffering elevated inflammation with regular pain in shoulders, neck, hips, knee. Frustratingly, NSD doesn't have any effect, nor does ACV.

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#517270 - 06/11/17 06:58 AM Re: NSD ineffective? [Re: fodmap]
Frederick Offline
Journeyman_AS_Kicker

Registered: 03/28/06
Posts: 122
Originally Posted By fodmap


my rheumatologist won't prescribe me a biologic (probably Etanercept as I took that once before several years ago) which I'm desperate to start to hopefully alleviate this pain.



As one rheumatologist has already refused to change your medication the chances are that you will not be able to find another willing to change you to Enbrel. You may well just have to wait for the problem with your intestines to clear up and then ask again.

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#517280 - 06/12/17 03:16 AM Re: NSD ineffective? [Re: fodmap]
DragonSlayer Offline
AS Czar

Registered: 09/05/01
Posts: 5989
Loc: Reno or SFLU Philippines
WELCOME, fodmap:

There have been several cases of NSD not working. A couple of these found that they had some heavy metal load and the diet began working after they were chelated.

If fasting works but NSD does not, I would certainly look in this direction.

But to give the diet some help, it is good to augment with some anti-inflammatory EFAs: Please take EVOliveOil 8X daily by teaspoonful, especially at least one before each meal. Borage seed oil perhaps 6 1000mg capsules upon retiring. If pain modulates up, some fresh wheatgrass juice will help reduce this: 4-6oz on empty stomach 3 days in a row, skip 4 days; repeat if necessary.

Intestinal lesions will increase AS activity, and I know nothing better to create/exacerbate these than NSAIDs like naproxen and ibuprofen.

Hope You are able to find relief soon; the EFAs should help You to eliminate the NSAIDs and the rest is up to the natural You.

HEALTH,
John
_________________________
Important AS Resources

Professor Ebringer: On Diet and AS;


RED ARROW --> Philippines

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#517286 - 06/13/17 11:45 AM Re: NSD ineffective? [Re: fodmap]
Kellybells Online   content
Active_Member

Registered: 01/21/17
Posts: 61
Loc: Toronto, ON
Hi fodmap,

Sorry to hear things aren't improving. I've only been doing NSD since January but I've spent a lot of time on the forum so a few things come to mind.

You may find it helpful to post a sample of what you're eating to see if it raises any red flags among other forum members. My first month on NSD was challenging - while I did see improvement, I had a lot of missteps and setbacks. What helped the most was seeing what others had to say about 'iffy' foods (e.g., dairy, nuts, onions, tomatoes, cabbage, grapes, chocolate, sugar, etc.) It seems starch isn't the only issue for some here, given reactions to foods like dairy, tomatoes and onions, which may not test starchy but aren't always tolerable.

Also, a number of forum members report combining NSD with additional interventions to help alter and improve gut flora. Some are using probiotics, some are using natural antibiotics (e.g., berberine, oregano oil, etc.), some are using both. I've also seen people talk about supplements to help rebuild gut integrity, such as l-glutamine or gelatin from bone broth. And at least one mention of butyrate (a preferred food for colon cells).

My own approach is to take a probiotic for 6-8 weeks, an herbal antibiotic for 1-2 weeks, and so on. I also eat homemade bone broth or gelatin frequently - it's also supposed to help with joint cartilage, which is a problem for me. But I've only been doing this for a few months, so it's still too early to say how much the protocol is helping - my naturopath told me to look for results after a year or two!

There may also be a time factor. While I noticed a big improvement after two weeks, especially to the stiffness and swelling, the pain in my joints has been very slow to improve. I suspect NSD stops the inflammation and halts further damage but that it takes time for actual damage, which causes pain, to heal. A month may not be enough time to tell the difference - I think I responded so quickly to NSD because I had already been avoiding dairy and grains for years, and had less damage.

Good luck! I hope you can find some relief.
_________________________
Suspected SpA. 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.

Jan 2017 - discovered NSD - 90-95% improvement in symptoms, continually amazed by my results, wish I'd found kickAS sooner
2014 - stopped eating all grains
2012 - stopped eating wheat
2010 - stopped eating dairy

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#517315 - 06/19/17 11:06 AM Re: NSD ineffective? [Re: DragonSlayer]
fodmap Offline
New_Member

Registered: 04/25/17
Posts: 2
Loc: UK
Thanks, DragonSlayer.

I've ordered some Borage Oil capsules and will give it a go, along with the EV Olive Oil.

From reading, the recommended dose of Borage Oil seems to be 1000mg per day - just checking that you suggest 6 x 1000mg?

Best,
Peter
_________________________
47 year old male. Diagnosed with AS at age 28. For most part never took medication except for Etanercept for 8 month period in 2006 which seemed to put it in remission. Now suffering elevated inflammation with regular pain in shoulders, neck, hips, knee. Frustratingly, NSD doesn't have any effect, nor does ACV.

Top
#517318 - 06/19/17 11:14 PM Re: NSD ineffective? [Re: fodmap]
DragonSlayer Offline
AS Czar

Registered: 09/05/01
Posts: 5989
Loc: Reno or SFLU Philippines
Hi, Peter:

Just from experience, the 1000mg might be a "maintenance" dose, but I have found that 1g effective GLA per 100# body weight is therapeutic; I have taken 8 1000mg capsules rather often when needed.

HEALTH,
John
_________________________
Important AS Resources

Professor Ebringer: On Diet and AS;


RED ARROW --> Philippines

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