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Considering trying out a low/no starch diet #279839
01/24/18 04:16 PM
01/24/18 04:16 PM
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kglenn Offline OP
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Hi All!

If any of you have experience with the low/no starch diet, please chime in. While I have mild low back and hip pain, most of my trouble at the moment is a swollen achilles and tendonitis in my elbow. I am considering a trial of eliminating starches to see if these issues would clear up. It would *seem* like a good test of the overall effectiveness of this treatment, one way or the other. Has anyone tried this, and if so, what was your experience? If your inflammation cleared, how long did it take? I'm not sure what a good testing time frame would be.

Thanks!


Karen
Female, early 50's, HLA B27+, family history of SpA
Diagnoses: USpA (9/17), limited Scleroderma/Raynaud's phenomenon/Sjogren's syndrome (1/16), stroke (8/15), Factor V Leiden (8/15)
AS symptoms: right heel enthesitis/tendonitis; elbow tendonitis; mild low back/buttocks and hip pain/stiffness; normal MRI
Treatment: Cosentyx; Xarelto; vitamins D3, B12, folate
Primary non-responder to Enbrel
Re: Considering trying out a low/no starch diet [Re: kglenn] #279841
01/24/18 11:32 PM
01/24/18 11:32 PM
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Reno/San Fernando LU PI
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Tacitus Offline
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Hello, kglenn:

I have had great results with the NSD both alone and in combination with antibiotics. There are many other success stories. Nearly all of the scientific studies have been positive, but dismissed because of sample size and inability to control the test subjects' dietary choices.

HEALTH,
John


Nota Bene: I am not a medical doctor, and my views do not represent the opinions of the SAA
AS Resources
My Long, Boring AS Story
Professor Alan Ebringer Diet and AS

Re: Considering trying out a low/no starch diet [Re: kglenn] #279842
01/25/18 02:48 AM
01/25/18 02:48 AM
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kglenn Offline OP
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Thanks, Tacitus--I have read your story and many of your posts. How long do you feel is a reasonable test, should I decide to try a no starch diet?


Karen
Female, early 50's, HLA B27+, family history of SpA
Diagnoses: USpA (9/17), limited Scleroderma/Raynaud's phenomenon/Sjogren's syndrome (1/16), stroke (8/15), Factor V Leiden (8/15)
AS symptoms: right heel enthesitis/tendonitis; elbow tendonitis; mild low back/buttocks and hip pain/stiffness; normal MRI
Treatment: Cosentyx; Xarelto; vitamins D3, B12, folate
Primary non-responder to Enbrel
Re: Considering trying out a low/no starch diet [Re: kglenn] #279844
01/25/18 01:25 PM
01/25/18 01:25 PM
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Tacitus Offline
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Hi, Karen:

I think the amount of time before perceptible results could be a function of several factors like amount of time with AS, basic severity, the overall diet prior to starting the regimen, and the degree of intestinal involvement. The NSD can take several months in some people, but most notice positive results within the first two weeks. Some of us do a "cleansing" regimen or fast prior to starting, to give a leg-up to the regimen and otherwise get a preview of the remission they should experience and provide some baseline ability to "listen" to their symptoms. A lot has been discovered this way.

HEALTH,
John


Nota Bene: I am not a medical doctor, and my views do not represent the opinions of the SAA
AS Resources
My Long, Boring AS Story
Professor Alan Ebringer Diet and AS

Re: Considering trying out a low/no starch diet [Re: kglenn] #279845
01/25/18 03:25 PM
01/25/18 03:25 PM
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kglenn Offline OP
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Okay--thanks!

I am brand new to spondylitis, with only mild involvement so far. My main issue is a swollen achilles (enthesitis + tendonitis) for the last 8 months. I have been refined sugar-free and eating a roughly Mediterannean-style diet for the the past 2+ years. No noticeable intestinal involvement at all, which I realize may indicate that this is not the right approach for me.


Karen
Female, early 50's, HLA B27+, family history of SpA
Diagnoses: USpA (9/17), limited Scleroderma/Raynaud's phenomenon/Sjogren's syndrome (1/16), stroke (8/15), Factor V Leiden (8/15)
AS symptoms: right heel enthesitis/tendonitis; elbow tendonitis; mild low back/buttocks and hip pain/stiffness; normal MRI
Treatment: Cosentyx; Xarelto; vitamins D3, B12, folate
Primary non-responder to Enbrel
Re: Considering trying out a low/no starch diet [Re: kglenn] #279847
01/25/18 11:39 PM
01/25/18 11:39 PM
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Tacitus Offline
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Hey, Karen--

An ounce of prevention..! Sugar is not very healthy in general, but does not usually exacerbate AS symptoms whereas caramel will. Salads saved me on this diet but eventually I had to eat more meats, safe nuts, and eggs/cheese.

You are likely to have very quick results. It took over a year for my Sjogren's symptoms to be reduced, and I found EVOliveOil by teaspoonful throughout the day (10+ times especially before any meal) very helpful. Carol Sinclair's book (The IBS Low-Starch Diet) is very useful and Andrea's website "Forest and Fauna" has some great recipes for baking.

HEALTH,
John


Nota Bene: I am not a medical doctor, and my views do not represent the opinions of the SAA
AS Resources
My Long, Boring AS Story
Professor Alan Ebringer Diet and AS

Re: Considering trying out a low/no starch diet [Re: kglenn] #279848
01/26/18 03:35 PM
01/26/18 03:35 PM
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Banana Offline
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Have you seen a Rhuematologist? What did your doctor say? Though you feel your disease is mild, once your ankles are damaged you will be limited in how far you can walk.

I went many years undiagnosed and tried this and several other diets--desperate for any fix. Several of the diets appeared to work, until they didn't. My disease just came and went for years in and out of remission. By the time I finally got diagnosed, my ankles were ruined. I can never go hiking, or skiing or skating. I can never stand for long periods of time missing out on many events that don't include sitting. There are no good surgeries for ankles. Ankles take 100% of your weight. So even if you try to have your ankles fused (so they never bend again, but you can walk) you are off that ankle for months. No weight on it. NO WEIGHT for months. Think about that, even showering.

I beg of you to see expert doctors because anything that happens to any of your joints/tendons might be permanent. It isn't a silly game you can play a year or two--it will effect your life forever. Forever.


Actema IV once a month (with pre loading for allergic reaction), Cymbalta x1 daily, Arava 20mg daily. Diagnosed with AS in 2004, suffered undiagnosed since 1982.
Re: Considering trying out a low/no starch diet [Re: kglenn] #279849
01/26/18 08:16 PM
01/26/18 08:16 PM
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kglenn Offline OP
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Hi Banana,

Thanks for your input. It is good to hear everyone's experiences.

I am seeing a rheumatologist and he has most recently recommended that I start a TNF inhibitor. This seems like a big leap to me, considering how minor my symptoms are. But unfortunately, due to other medications I am on, allergies, and insurance issues, I cannot take NSAIDS (not keen on them anyway), sulfasalazine, or Otezla.

So before I try Enbrel I am considering a no starch trial. I have not yet discussed this with my rheumatologist, but will at my next appointment (March).

My ankle is not currently affected--just my achilles. It does stop me from running, but not anything else. I am aware, though, that I could have permanent damage if it remains untreated, so obviously that is a concern.


Karen
Female, early 50's, HLA B27+, family history of SpA
Diagnoses: USpA (9/17), limited Scleroderma/Raynaud's phenomenon/Sjogren's syndrome (1/16), stroke (8/15), Factor V Leiden (8/15)
AS symptoms: right heel enthesitis/tendonitis; elbow tendonitis; mild low back/buttocks and hip pain/stiffness; normal MRI
Treatment: Cosentyx; Xarelto; vitamins D3, B12, folate
Primary non-responder to Enbrel
Re: Considering trying out a low/no starch diet [Re: kglenn] #279851
01/26/18 09:04 PM
01/26/18 09:04 PM
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kjb Offline
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kglenn,

I have to say I agree with Banana, ask the Rhuemy. But know too that just because you have minor symptoms you still have AS activity, its so important to try to slow its progression. From what I understand the Diet may help with symptoms but it hasn't been proven to stop or slow the progression. It might seem like a big leap, but if it is already in the Ankle region ie:achilles you don't want it to progress.
I would never venture to tell someone what to do, in any form, but my opinion is make sure you talk about your thoughts with the rheumy before you make any decisions or rule anything out.

Re: Considering trying out a low/no starch diet [Re: kglenn] #279852
01/27/18 12:24 AM
01/27/18 12:24 AM
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kglenn Offline OP
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Thanks for your input, kjb. I will certainly not make any major decision without discussing it thoroughly with my doctor.


Karen
Female, early 50's, HLA B27+, family history of SpA
Diagnoses: USpA (9/17), limited Scleroderma/Raynaud's phenomenon/Sjogren's syndrome (1/16), stroke (8/15), Factor V Leiden (8/15)
AS symptoms: right heel enthesitis/tendonitis; elbow tendonitis; mild low back/buttocks and hip pain/stiffness; normal MRI
Treatment: Cosentyx; Xarelto; vitamins D3, B12, folate
Primary non-responder to Enbrel
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