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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
01/29/18 07:53 PM
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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/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] #279910
02/02/18 03:05 PM
02/02/18 03:05 PM
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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/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] #279918
02/02/18 10:53 PM
02/02/18 10:53 PM
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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
02/03/18 01:17 AM
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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/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] #279951
02/14/18 08:22 PM
02/14/18 08:22 PM
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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/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] #280117
03/29/18 02:44 PM
03/29/18 02:44 PM
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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/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] #280118
03/29/18 02:47 PM
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 replacements: right-June 2014, left-Aug 2018
MTX, Humira, Cyclobenzaprine, plus Celebrex as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Melatonin, Culturelle probiotic
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