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#471801 - 06/16/12 12:50 PM
Hello (again)!
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New_Member
Registered: 06/16/12
Posts: 7
Loc: Wisconsin, USA
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I haven't been here in so, so long. I completely forgot my screen name (again). I've been doing some crazy research (and experimentation) over the last couple of years into my various conditions. I keep coming back to hormonal imbalances and how they play into my overall health. I have PCOS, which my doctor tells me is actually a symptom of a larger endocrine problem (recent research is showing). I know I am estrogen dominant and short on progesterone (though clearly not short enough to have fertility issues). As I'm looking into progesterone deficiency, I'm finding SO many of the symptoms actually mirror hypothyroidism and some of my symptoms with AS. I had a lot of severe reactions to pharmaceutical medications so I went off of them several years ago and fired my rheumy (for more reasons that just the meds.. he was annoying  and hired a naturopath. I still have my flares, but with careful use of various meds and a LOT of changes in diet (to a more paleo/low grain diet), I'm noticing a lot of positive changes. I dealt with my estrogen dominance (and continue to deal with it) and now I'm looking at ways to boost my progesterone levels. Has anyone had any experience or insight with hormonal imbalance? (I realize this is very convoluted.. I'm not even sure how to phrase exactly what I'm looking for!)
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Mom of a fiery 3 year old boy, a sweet 1 year old lady baby, and a our newest little man, born December '12.
Diagnosed at age 22 in 2005. Handling all symptoms holistically through diet and chiropractic after suffering several side effects from pharmaceutical medications early on.
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#471803 - 06/16/12 01:52 PM
Re: Hello (again)!
[Re: TGDoula]
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Black_Belt_AS_Kicker
Registered: 08/30/11
Posts: 425
Loc: Ontario, Canada
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Look into Multiple Endocrine Neoplasia (M.E.N.s)
My hormones are deficient. I have many allergies. I am following celiac/fructose malabsorption/intolerance/diabetic diet just to try to get a handle, of my many allergies. I am allergic to sulfites which is in all drugs here in Canada. I live with pain, and other health issues without meds.
I have adrenal/pancreas/thyroid/parathyroid and possible pituitary problems. These are all Endocrine problems. Look up Canada Multiple Endocrine Neoplasia http://www.facebook.com/#!/groups/canadamens/ There is much information in the files there.
Your not crazy - my Rheumy believes me and they're so happy I am finally getting help, with an referral through my NP/MD to an Endo/Surgeon. I am also looking into genetic testing for the MENs problems.
Hugs Gerri & Makaylah (service dog)
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KickAS member since 04/22/06 Psoriasis(72), AS(2006), PsA with Spondylitis(2011),Vitiligo (69), sleep apnea (2004), Bronchial Asthma, many allergies, anaphylaxis allergy to sulfites, diabetic, Vitamin D deficient - many co-morbidities
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#471819 - 06/16/12 08:42 PM
Re: Hello (again)!
[Re: Gerri54]
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New_Member
Registered: 06/16/12
Posts: 7
Loc: Wisconsin, USA
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I also have MANY allergies (sulfites are one of them). I'm only scratching the surface of understanding what foods are causing me issues, though with each pregnancy, my dairy sensitivity has gotten worse. My allergies began right around the same time my symptoms with AS were manifesting.
(I don't know how others feel about it, but I sometimes wonder if my booster shots before entering college triggered something.. I had never had any sort of allergy or joint pain until within just a few months of having the round of shots before going into university). That said I know I've had hormonal imbalances going back to my childhood. Part of what made me start looking into how all of this might be connected is the fact that I cannot breastfeed. The cause is traced back to a hormonal imbalance during puberty causing the breasts not to develop properly (hypoplastic breasts resulting in insufficient glandular tissue).
I've long suspected Multiple Chemical Sensitivity (I can't use any sort of commercial beauty product without breaking into hives), but I haven't heard of MEN. I will certainly look into it and talk to my doctor about it (my GP is wonderful and always willing to dig deeper into things for me). I also found a new chiro recently who focuses on naturopathy to correct/lessen hormonal deficiencies/imbalances.
I guess I just think AS (for me) is a piece of a larger puzzle. I've spent 7 years trying to get to the bottom of it and I feel like I've recently uncovered a lot of new ground.
Thank you for your insight, Gerri!
_________________________
Mom of a fiery 3 year old boy, a sweet 1 year old lady baby, and a our newest little man, born December '12.
Diagnosed at age 22 in 2005. Handling all symptoms holistically through diet and chiropractic after suffering several side effects from pharmaceutical medications early on.
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#471820 - 06/16/12 08:48 PM
Re: Hello (again)!
[Re: TGDoula]
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New_Member
Registered: 06/16/12
Posts: 7
Loc: Wisconsin, USA
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I have been working on cutting gluten out. It's difficult with two youngsters and a pregnancy to keep on top of. I find many days I haven't eaten much at the end of the day, so try as I might, sometimes PB toast calls to me! Though we've pretty much gotten to where we only eat sprouted grain (I realize it's still gluten, but I feel it's a healthier grain than processed wheat). I'm getting there, though.  I definitely notice a difference in myself, especially my digestion, when I avoid casein and gluten. We don't eat a lot of processed sugars either (but again..... pregnant.. sometimes Ben and Jerry's calls to me. ;)) We're also careful about buying hormone free meats to avoid the hormonal influence from commercially raised animal protein. It's tough and it's a big process, but I KNOW diet is playing HUGE roll in my overall health.
_________________________
Mom of a fiery 3 year old boy, a sweet 1 year old lady baby, and a our newest little man, born December '12.
Diagnosed at age 22 in 2005. Handling all symptoms holistically through diet and chiropractic after suffering several side effects from pharmaceutical medications early on.
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#471823 - 06/16/12 10:45 PM
Re: Hello (again)!
[Re: TGDoula]
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Journeyman_AS_Kicker
Registered: 02/13/11
Posts: 120
Loc: Swede, in Squamish, BC, Canada
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A lot of hormone imbalance 'stuff' amongst the women in my family. Many problems with backpain and feet also, but the main complaints of mother & grandmother have always been migraines, severe astma, food allergies (sulphites, sugar, preservatives, etc.). The back and joint/muscle pain was always secondary to them, my sister also, while for me it's the textbook 'pre-AS' symptoms and trouble conceiving. I believe their symptoms and problems could have/can be alleviated with an anti-inflammatory diet. My situation is vastly better due to a massive change in food 'intake', going on 1.5yrs now 
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B27+, all imaging is clear. 2nd Rheumy: 'inflammatory backpain'. IBS + SI/lumbar/thoracic/cervical stiffness, pain, enthesitis. Major improvement since diet-change: Autoimmune protocolStarted LDN Jan 2013.
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#471843 - 06/17/12 12:05 PM
Re: Hello (again)!
[Re: TGDoula]
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Very_Addicted_to_AS_Kickin
Registered: 01/13/08
Posts: 19047
Loc: Upstate NY
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i've often wondered why a second common time to develop autoimmune diseases is mid 30s, like i did at age 35. i went through fairly early perimenopause (~38 though hormones probably already changing before that) and menopause (46). so thought, maybe a change in hormones was at least partially to blame. we tried the bioidentical progesterone cream for a year or two, but it didn't seem to be making any difference. on the inflammatory arthritis or the metabolic syndrome. still, it seems like everything started around the same time, age 35. i do think its probably all connected, though progesterone therapy wasn't doing anything, maybe not enough. maybe other hormones too. but found other things: see below my signature that have been helpful, so that's the path we are currently on.
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   sue USpA LDN/zanaflex/flector vits C, D. probiotics. fish oil. CoQ, Mg, Ca pred taper for flares occasional naproxen / Aleve chiro walk no dairy (casein sensitivity), limited eggs future: humira, soon I hope
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