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A Question For The Neuro Folk - Women


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12 replies to this topic

#1 Kamma

 
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Posted 27 March 2012 - 12:40 PM

Hi. I have a question for the women who are affected primarily neurologically:

During your healing process did your symptoms get really intense just prior to your period and a few days after getting it?

I am ingesting only meat, vegetables and fruit so I know that I am not getting any gluten by accident. However, my vertigo has ramped right up and I notice that it's always in the week before my period and for a few days after.

Does anyone else experience this or other symptoms during that time? Does it ever stop?

Thanks!
Kamma
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#2 pricklypear1971

 
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Posted 27 March 2012 - 01:20 PM

I've always noticed my DH was worse on certain weeks of my cycle. I also had neuro issues but never noticed a cycle with them.

I'm pretty sure the whole ai thing screws up our hormonal balance.
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
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Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#3 Skylark

 
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Posted 27 March 2012 - 01:59 PM

I was getting menstrual migraines until I started getting them all the time. :blink:
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#4 ravenwoodglass

 
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Posted 27 March 2012 - 03:27 PM

I used to have more problems before my period. I don't know if that would have changed gluten free since celiac took my period away early.
One thought. Are you on the pill? If you are some have the pills with the hormones in them then a week of placebo pills. Maybe your system doesn't like something in the those?
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#5 Kamma

 
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Posted 27 March 2012 - 05:14 PM

Nope, not on the pill. Had my tubes clipped since I was 28.

I've been watching my symptoms for the past three months since going gluten free. The vertigo and exhaustion/brain fog slowly lessened but always returned with a vengeance prior to and after my menstruation. It's to the point where my head is bobbing and I'm having the torso rotations and lurching sideways when I walk.

I can't understand the connection and am trying to wrap my head around why the hormonal fluctuations would cause this or like in your cases, the headaches and DH.

Ugh! I hate not knowing or not being able to understand what's going on. I feel like I'm at the mercy of some great force that decides to throw a monkey wrench into things and mess me up. Again!
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#6 pricklypear1971

 
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Posted 27 March 2012 - 05:27 PM

Nope, not on the pill. Had my tubes clipped since I was 28.

I've been watching my symptoms for the past three months since going gluten free. The vertigo and exhaustion/brain fog slowly lessened but always returned with a vengeance prior to and after my menstruation. It's to the point where my head is bobbing and I'm having the torso rotations and lurching sideways when I walk.

I can't understand the connection and am trying to wrap my head around why the hormonal fluctuations would cause this or like in your cases, the headaches and DH.

Ugh! I hate not knowing or not being able to understand what's going on. I feel like I'm at the mercy of some great force that decides to throw a monkey wrench into things and mess me up. Again!


Have you tried natural progesterone cream to see if it helps? I was low for a while and knew it was progesterone because my period wouldn't stop, but I'd use the cream and it would for 12 hours. Took 2 doses per day to stop that for a few months. Then, I needed it for the second half of my cycle for about 6 months (sore boobs)- then I felt worse with it so I stopped and sore boobs went away. Read a Dr. John Lee book for info on how to use it.
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#7 Kamma

 
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Posted 27 March 2012 - 07:54 PM

Have you tried natural progesterone cream to see if it helps? I was low for a while and knew it was progesterone because my period wouldn't stop, but I'd use the cream and it would for 12 hours. Took 2 doses per day to stop that for a few months. Then, I needed it for the second half of my cycle for about 6 months (sore boobs)- then I felt worse with it so I stopped and sore boobs went away. Read a Dr. John Lee book for info on how to use it.



I will look up Dr. John Lee, Prickly. Thank you.
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#8 pricklypear1971

 
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Posted 27 March 2012 - 08:01 PM

I will look up Dr. John Lee, Prickly. Thank you.


In the end it was iodine causing my DH flare (after gluten-free), but there was definitely an ebb/flow of rash based on my cycle.

My ND is also treating/testing me for adrenal issues...so maybe that's another area to look?
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#9 dilettantesteph

 
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Posted 28 March 2012 - 03:56 AM

My glutening symptoms definitely get worse just before and at the start of my period.
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#10 Kamma

 
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Posted 28 March 2012 - 08:00 AM

Have been doing some more reading and apparently it's common for women with any kind of autoimmune disease to experience a worsening of symptoms just prior to and for a few days after their menstruation. I'm trying to read why but that requires a clearer head than what I've got right now to go through and understand the scientific research papers.

:lol:
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#11 pricklypear1971

 
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Posted 28 March 2012 - 08:09 AM

Have been doing some more reading and apparently it's common for women with any kind of autoimmune disease to experience a worsening of symptoms just prior to and for a few days after their menstruation. I'm trying to read why but that requires a clearer head than what I've got right now to go through and understand the scientific research papers.

:lol:



Would make sense since some believe that all ai stems from the same root.

I don't know ai is the cause or effect but when I help my hormonal and endocrine system (progesterone, DHA) I see rapid and obvious improvements.

Exercise helps me tremendously. That may be the sugar factor for me, or it may be because exercise helps stabilize hormones, or because it helps rid the body of stuff my ai body can't process (according to one book).

It's hard as heck to exercise but I've learned it helps so even if it's a short walk, do it.
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#12 Kamma

 
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Posted 28 March 2012 - 12:54 PM

Would make sense since some believe that all ai stems from the same root.

I don't know ai is the cause or effect but when I help my hormonal and endocrine system (progesterone, DHA) I see rapid and obvious improvements.

Exercise helps me tremendously. That may be the sugar factor for me, or it may be because exercise helps stabilize hormones, or because it helps rid the body of stuff my ai body can't process (according to one book).

It's hard as heck to exercise but I've learned it helps so even if it's a short walk, do it.


Totally with you on the exercise part. On my good days I walk three to four miles with the dogs. I used to be a cyclist/winter cyclist and have taught yoga for 25 years. On my really bad days, like the last three...I can't walk a straight line and my torso is rotating. Ugh.

I'm really going to look into this progesterone stuff. Apparently the last few days before you have your period is when your estrogen and progesterone levels fall.
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#13 pricklypear1971

 
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Posted 28 March 2012 - 02:11 PM

I'd look into adrenal issues, and also keep a food diary to try to find out if something triggers the vertigo in general.

I was getting vertigo episodes before gluten-free - they have stopped now...it's possible there's something else triggering it. Even environmental allergies (I get headaches and ear fluid when allergens are high, but nothing like they used to be).
  • 0
Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!




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