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#517089 - 05/10/17 09:04 AM No/Low Starch Diet Success/Failure Stories Ratio
Robin_H Offline
Member

Registered: 09/13/15
Posts: 45
Loc: Hubei, China
From just reading the No Starch Diet forum I have the impression that it's mostly a success. If I talk to a rheumatologist or read authoritative websites like WebMD (authoritative??), Mayo Clinic, Medscape, Spondylitis Association of America, et-al, I have always found them to state that diet has no effect. But that is changing.

Is there information on KickAS as to what proportion of people that comply to the NSD diet have success along with some patient features such as HLA-B27, gut dysfunctions, comorbidities, sex, age,... A survey would be quite nice.
_________________________
HLA-B27 neg; Mis-diagnosed with fibromyalgia in mid-20s.
Vague AS symptoms in 20s and early 30s (no diagnosis).
During age 47 (2015) developed complete axial inflammation (started from from skull and progressed down to sacrum). Included psoriasis. Trigger in scull was reverse blockage in a SCUBA mishap. Straw that broke the camels back was over use of NSAIDs. NSD works well but not perfect. Strong involvement between symptoms and gut integrity.

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#517091 - 05/10/17 12:52 PM Re: No/Low Starch Diet Success/Failure Stories Ratio [Re: Robin_H]
jackson Offline
New_Member

Registered: 04/13/17
Posts: 10
Sex: M
Age: 46
HLA-B27: positive

Gut dysfunctions: if you reference the Bristol Stool Chart I was primarily a type 6 or 7 bowel movement type for most of adulthood. Diarrhea cha,cha, cha. I'm consistently type 4 or 5 now. TMI? Perhaps.

Diet: for me I eat any and all fruits, vegetables (potatoes included), nuts, and legumes with no fear. AS has scared me off breads, pastas---any gluten type stuff, sugar, and alcohol. Red meat in limited rotation. Big on fish/seafood. Also avoid dairy but don't freak out if there's cheese in a salad. I've always drank a lot of water which never hurts. Even if I didn't have AS this is a good way to live for a mature adult so I'm not too bitter.

Diet Success Rating: Absolutely I believe it's helped

Other things which may or may not be snake oil potions I subscribe to: multivitamin, probiotic, fish oil, vitamin D, C, B12. Also cinnamon, curcumin, and ginger. Last and my least favorite: Dr Braggs apple cider vinegar, bleh.

No NSAIDS but I have an open prescription to meloxicam. Yesterday was my 3rd shot of Humira. I can't tell how much it's helping really. Neck does seem less rigid. I don't want to be on this stuff forever.

Exercise/physical activity stuff: weightlifting, dog walking, some restorative weekend yoga stuff (not much at all involved with this routine), yard work. Pretty much whatever.


No other health issues



Edited by jackson (05/10/17 12:55 PM)

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#517109 - 05/13/17 05:28 AM Re: No/Low Starch Diet Success/Failure Stories Ratio [Re: Robin_H]
Robin_H Offline
Member

Registered: 09/13/15
Posts: 45
Loc: Hubei, China
Thanks Jackson.

I really was looking for just the answer to my question or if such a thread exists from long ago.

But this is a start. Your response adds a few good factors I did not think of. Ideally a structured survey designed by doctors, researchers and patients would be good so that the data is well organized (in a database). I don't now how many active members are here but this website seems to have great potential because of the numbers and variety!! I just don't know about privacy issues, ethical issues, etc, for gathering the data. Of course the members might have difficulty getting complete data if CT, blood tests, etc are required but I feel that what we can provide could be a wealth of information to give researchers and doctors clues.

Sometimes I feel researchers spend too much time looking at the biochemistry and fail to listen to patients, or just don't have the opportunity to listen, to know what simple things work and use those as clues to understand the biochemistry. Having a bigger picture that includes accidents, work conditions, primary food habits,... would definitely be useful. It would be nice to get clues into the environmental triggers in AS's etiology in addition to remedies we are sharing here to reduce symptoms.

I ask my doctor why starch makes me feel so bad. He said "I don't know. Some patients report that. Some doctors believe that bacteria are the cause. I don't believe it."

I feel that they want easy problems where there is grant money, the experiment is easy to control and simplify and the results are quick because you have to produce a new research paper every month!! I feel that most or all of the theories are valid and that more will be found if BIG DATA was available. This website might be a good starting point. Now how does the webmaster feel about that??

Many, or most, people with AS are just diagnosed, maybe given a pill and told to cope. It is frustrating. We need to take ownership of the disease at more than just an individual or website level (sorry, I'm a bit far away to join the BBQ's). Just as in a business where employees are empowered, if AS patients are empowered to give input and influence the direction of research then the problem will improve faster.

Perhaps a new thread needs to be started named "BIG DATA project on AS. What is needed??" Any suggestions?

KG
_________________________
HLA-B27 neg; Mis-diagnosed with fibromyalgia in mid-20s.
Vague AS symptoms in 20s and early 30s (no diagnosis).
During age 47 (2015) developed complete axial inflammation (started from from skull and progressed down to sacrum). Included psoriasis. Trigger in scull was reverse blockage in a SCUBA mishap. Straw that broke the camels back was over use of NSAIDs. NSD works well but not perfect. Strong involvement between symptoms and gut integrity.

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#517120 - 05/15/17 10:07 PM Re: No/Low Starch Diet Success/Failure Stories Ratio [Re: Robin_H]
DavidP Offline
Master_Sergeant_AS_Kicker

Registered: 09/24/07
Posts: 604
Loc: Sale, Victoria, Australia
Hi Robyn_H,

There are a lot of people with AS who feel the NSD doesn't work for them. But studies have found that sub-clinical ileitis is present for at least 70% of people with a spondyloarthropathy. The literature offers some possible explanations - firstly, serum IgA levels are elevated in AS. IgA is a gut immunoglobulin indicative of gut infection, but strangely when IgA levels are highest the signs of gut dysfunction are lowest - indicating that the IgA is at least in part doing its job to quell gut symptoms. Secondly, it is well known that the Th17 / IL23 axis is involved in AS. As levels of IL17 and IL23 rise in the gut the body responds by increasing the number of regulatory T cells (which are another form of T helper cell) whose role is to suppress inflammation and thereby limit the damaging effects of inflammation. It is suggested that a strong Treg response might partially or wholly mask the symptoms of gut dysfunction giving some people the impression that diet has no effect on their disease.

I tend to view AS as a two part disease. The first part in the gut, which may or may not be recognised by the patient, primes the immune system as if a chronic "infection" were occurring. So a LSD, or better still a NSD, might improve the gut issues even though the patient may not recognise this. Clearly, adopting a NSD will improve gut issues and at the same time act as a 'preventer' of the more sinister aspects of AS - the characteristic axial and peripheral inflammation / pain associated with AS. You could speculate that were the patient to adopt a NSD before any axial / peripheral aspects of the disease had become apparent then perhaps that patient would NEVER go on to develop AS.

If however, circulating gut cytokines, such as IL23, are chronically elevated, eventually a secondary response will occur remotely at tendon / ligament attachment sites, resulting in enthesitis, initially in the complete absence of synovitis. The attachment sites are commonly close to synovial joints such that inflammation will later spread to the actual joint, and its worth noting that the 'style' of the inflammation, in the gut, in the entheses and in the joints are NOT the same. Its been my own experience, that once synovitis becomes established in my knees, strengthening and further limiting my diet has little effect on knocking it down. Since my gut symptoms are overt, that diet can improve gut symptoms is obvious, however, it seems to me that axial and peripheral aspects are much slower to respond to diet, possibly because the nature of the inflammation is different there, and not directly linked to diet. Hence diet, whilst it can improve the peripheral aspects of my undifferentiated spondyloarthropathy has to also be employed as a long term preventer of the non-gut issues of the disease.
_________________________
Dx Oct 2006 B27+ undifferentiated spondlyarthropathy (uSpA) with mild sebhorrhoeic dermatitis and mild Inflammatory Bowel Disease (IBD) controlled by NSD since 2007.

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#517124 - 05/15/17 11:32 PM Re: No/Low Starch Diet Success/Failure Stories Ratio [Re: DavidP]
jay_bharat Offline
Master_Sergeant_AS_Kicker

Registered: 12/08/08
Posts: 647
Loc: INDIA, Tamil Nadu
Hi DavidP,

Thank you for the details given.

Quote:
I tend to view AS as a two part disease.


Can you suggest any protocol to overcome the problem when we follow diet and to improve the "two parts" mentioned by you. It will be very useful for those following diet like me and still feel no improvement.

Regards.

Jay

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#517125 - 05/16/17 03:38 AM Re: No/Low Starch Diet Success/Failure Stories Ratio [Re: jay_bharat]
DavidP Offline
Master_Sergeant_AS_Kicker

Registered: 09/24/07
Posts: 604
Loc: Sale, Victoria, Australia
Hi Jay,

I don't really have any dietary advice to help those who don't seem to be responding to the NSD.

In my own case, early days, I had a lot of heat in my body, what I thought of as rheumatics, and I used to control it with daily Celebrex. On nearing 24 hours, the generalised heat and stiffness would start to return, only to be stopped again by the next Celebrex tablet. I continued on Celebrex for 18 months, then by chance I read a book of my mothers, by Giraud W. Campbell, titled "A Doctor's Proven New Home Cure for Arthritis" - very inspirational. I had absolutely NO expectation that the dietary approach he advocated would work (I only say that because some people have suggested my improvement as due to the Placebo effect).

He was essentially recommending a low starch diet, starting off by fasting. After 24 hours fasting, I was due my next Celebrex, but to my surprise the rheumatics for once had not coming back, so I skipped the tablet, and went to bed. The rheumatics never came back, so I started on a Low Starch Diet. I went well for a month, but then the pains started coming back, so I took out processed meats, then later took out dairy, later still took out nuts, then sugary fruits and dried fruits. The longed for day when my gut would be healed and I could reinstate starch has NEVER happened.

I can slip-up with starch every now and again, perhaps a couple of times, but if the slip-ups mount I risk blowing a joint in my toes, or foot or perhaps my knees. So there is a big incentive not to make too many mistakes with starchy or sugary foods. As I indicated, once an enthesitis is established, or a joint blown up, diet alone wont easily fix it, at least not in the short term. I have had hot spots that have taken at least six months to resolve by themselves, others have only be resolved by cortisone injections into joints. Interestingly, cortisone injected into my knee for instance, has not only fixed my knee in 4 or 5 days but also resolved long standing inflammatory hot spots in my feet for instance, and they've stayed healed.

Everybody reacts slightly differently, and there are many patients who've had a dramatic lessening of symptoms due to dietary changes.

I suppose my only meaningful advice is that we all have to take a long term approach with diet - and hope for the best.

Kindest regards - David
_________________________
Dx Oct 2006 B27+ undifferentiated spondlyarthropathy (uSpA) with mild sebhorrhoeic dermatitis and mild Inflammatory Bowel Disease (IBD) controlled by NSD since 2007.

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#517129 - 05/16/17 11:10 AM Re: No/Low Starch Diet Success/Failure Stories Ratio [Re: DavidP]
jay_bharat Offline
Master_Sergeant_AS_Kicker

Registered: 12/08/08
Posts: 647
Loc: INDIA, Tamil Nadu
Hi DavidP,
Thanks for your detailed reply. I received a copy of the book "A Doctor's Proven New Home Cure for Arthritis" a couple of days back. I am yet to go through it. Many people suggest fasting. I am bit reluctant to do no food fast. I did 3 day apple fast before starting NSD 8 months back. But did not find any change.

Regards.

Jay

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