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Considering trying out a low/no starch diet #279839
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 and hip pain/stiffness; normal MRI
Treatment: Enbrel; Xarelto; vitamins D3, B6, B12, folate

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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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
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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 and hip pain/stiffness; normal MRI
Treatment: Enbrel; Xarelto; vitamins D3, B6, B12, folate

Re: Considering trying out a low/no starch diet [Re: kglenn] #279844
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 and hip pain/stiffness; normal MRI
Treatment: Enbrel; Xarelto; vitamins D3, B6, B12, folate

Re: Considering trying out a low/no starch diet [Re: kglenn] #279847
01/25/18 11:39 PM
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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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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
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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 and hip pain/stiffness; normal MRI
Treatment: Enbrel; Xarelto; vitamins D3, B6, B12, folate

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
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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 and hip pain/stiffness; normal MRI
Treatment: Enbrel; Xarelto; vitamins D3, B6, B12, folate

Re: Considering trying out a low/no starch diet [Re: kglenn] #279864
01/29/18 02:19 PM
01/29/18 02:19 PM
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Early aggressive treatment is the recommended treatment now. Why? Because like my ankles mentioned, it doesn't take much to cause damage that can not be repaired/ Why? Because living with inflammation can cause kidney and or cardiac issues. There is research indicating that many AS patients by the time they are 35 years old, have cardiac issues. Again, that can not be repaired.

Though the Anti TNFs, might seem "strong" , NSAIDS and steriods cause side effects more quickly and more commonly than the anti TNFs. I so wish I could have take them before my damage. I am disabled, why? Because of my ankles, I can't stand a long time (eliminates many jobs) and my knuckles. That bones aren't damaged, but the tenons are stretched so so unbalanced. Which is extremely important when buttoning shirts, holding a pencil.

I urge you to not think of your disease as mild but as untreated.

Anna


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] #279866
01/29/18 04:20 PM
01/29/18 04:20 PM
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The risk profile of the biologics is FAR better than nsaids. nsaids are horriblel for you.The biologics are truly wonder drugs.

I did the NSD for two years and am now on a LSD, but will stay on a biologic for life if I can. NSD got me out of pain and got my CRP down from 25-30 to 8-10. Addition of biologic got it down under 1.

Only wish I had started the biologic sooner before all the damage which will leave me uncomfortable for life.

Re: Considering trying out a low/no starch diet [Re: kglenn] #279870
01/29/18 07:53 PM
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kglenn Offline OP
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Thanks for your input, Anna and Eleven11--I appreciate everyones' experiences as I consider my options. NSAIDS are note even on table, as I can't take them.

Best,

Karen

Last edited by kglenn; 01/29/18 07:54 PM.

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 and hip pain/stiffness; normal MRI
Treatment: Enbrel; Xarelto; vitamins D3, B6, B12, folate

Re: Considering trying out a low/no starch diet [Re: kglenn] #279910
02/02/18 03:05 PM
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kglenn Offline OP
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Tacitus--could you please elaborate on what is considered a 'safe nut' on a a low starch diet? 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 and hip pain/stiffness; normal MRI
Treatment: Enbrel; Xarelto; vitamins D3, B6, B12, folate

Re: Considering trying out a low/no starch diet [Re: kglenn] #279918
02/02/18 10:53 PM
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Tacitus Offline
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Hi, Karen:

There is a list of starch content of foods that will be helpful, along with the discussion that follows.
,
Cashews and peanuts are the most starchy, cashews are a true tree nut and very starchy, but peanuts are legumes. Safe nuts are almonds (albeit some people do react to the skins that are moderately starchy), walnuts, pistachios, macadamias, Brazil nuts, filberts, and coconuts. Pecans should be safe, but some people do react to them.

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] #279919
02/03/18 01:17 AM
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kglenn Offline OP
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Wow--that list is an impressive bit of work! And so British smile Thanks for sharing it.

I read the comments, but I'm still not really clear on what level of starches is acceptable (since obviously unless you are eating a diet of straight animal products--ick, it is impossible to avoid ALL starches). I gather that the quantity of starch one can 'get away with' varies from individual to individual, still it seems there should be a recommended starting place (i.e. not more than x grams of starch per meal or day), with room to experiment if/when you feel that you have inflammation under control. Kind of like an illumination diet.

Anyway, I am on day 2 now, so we'll see how it goes.


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 and hip pain/stiffness; normal MRI
Treatment: Enbrel; Xarelto; vitamins D3, B6, B12, folate

Re: Considering trying out a low/no starch diet [Re: kglenn] #279951
02/14/18 08:22 PM
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kglenn Offline OP
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Just thought I'd post an update. I've been virtually starch-free for 2 weeks now, with no apparent change in my heel enthesitis, elbow pain, back stiffness, etc. It's not as difficult as I envisioned to follow this diet plan, which is nice. Though I miss my Sunday morning oatmeal wink I have had some success with making breads with almond flour and am about to try some cookies. Planning to forge ahead for a few more weeks, but then will discontinue if I do not notice any improvement. Happy Valentine's Day to all!

Last edited by kglenn; 02/14/18 08:23 PM.

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 and hip pain/stiffness; normal MRI
Treatment: Enbrel; Xarelto; vitamins D3, B6, B12, folate

Re: Considering trying out a low/no starch diet [Re: kglenn] #280117
03/29/18 02:44 PM
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kglenn Offline OP
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Another update. I went 5 weeks starch free with no apparent improvement in my inflammation. It was then time for my rheumatology visit and I decided to discontinue the diet and proceed with starting Enbrel. Between needing to get immunizations updated and coming down with a bad head cold, starting the TNF has been delayed a bit, but I am now scheduled to have my first dose on Sunday, April 1st. Hoping all goes well and this stuff does what it is supposed to with few to no side effects. Wish me luck!


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 and hip pain/stiffness; normal MRI
Treatment: Enbrel; Xarelto; vitamins D3, B6, B12, folate

Re: Considering trying out a low/no starch diet [Re: kglenn] #280118
03/29/18 02:47 PM
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Good luck, Karen! Please continue to keep us posted.


Ginny - 57 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis
unicompartmental knee replacement June 2014
MTX, Humira, Cyclobenzaprine, plus Celebrex as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Melatonin, Culturelle probiotic
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