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Celiac And Perimenopause

celiac perimenopause menopause

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#1 alesusy

 
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Posted 12 July 2013 - 08:59 AM

Dear all

I'm not certain this is the right forum, I hope so. This is a post mainly for women who were dx over 40 and I'm writing it after months of trial and experience...

 

I am 48, I've been gluten-free for more than 7 months now and things have been going better, in terms of energy and gut problems (and antibodies, which have dropped within normal range). However in the last few months I've been suffering from a host of weird symptoms which sped me from doctor to doctor. It was quite hard to get to a diagnosis. What it all boils down to is that apparently I'm in the throes of perimenopause, and it is not a nice experience. I've been having irregular periods - every 15 days, then every 40 or so. Of course, when last month I finally was tested for hormonal imbalance I had a perfect 28 days cycle - so my values came out normal. But the symptoms are there.

 

Now - I would like to list the symptoms and then to list the tests I took thinking I was deathly ill. But the REAL reason I'm writing is because my weird symptoms started a couple of months before I was DX as celiac. Perimenopause among other things can unleash a host of food allergies. I'm thinking the two things are connected and I also saw at least one medical study stating that celiac women have more menopausal problems than average. I've also read some women become celiac after a pregnancy - hormones again. Now, I don't know whether being celiac is playing with my hormones or whether my hormones went crazy and among other things triggered a gluten sensitivity (but I'm not classed as 'sensitive', I am a bona fide, no-gluten-for-life celiac, or so it would seem). But I'm certain there is a connection there and would love to hear from other people having the same experience.

 

TESTS I TOOK IN THE LAST THREE MONTHS - more ecographies - female hormones (blood) - thyroid (hormones, antibodies, all normal) - brain scan and brain blood vessels scan (all normal) - several functionality tests at my eye doctor (all normal) - 24-hour blood pressure check (2 slight peaks) - heart check (all good) - neck arteries scan (all good)  anything else? don't think so... add to these all the tests I took BEFORE I was dx as celiac and frankly, it's enough to understand why I'm a nervous wreck at times.

 

SYMPTOMS - they all come and go in, well, cycles, although by no mean regular! - Terrible shoulder tension. Tension headaches. Aura migraines with no pain (hence the brain scan although my eye doctor told me they were hormones-related; never had those before in my life and they are REALLY scary, colored haloes in your eyes eating up the visual field for 20 to 40 minutes) - loose stools - aches in legs - dizziness - slight nausea - lowered, blurry  vision - very dry eyes and very dry vagina (yes I know about Sjogren but my eyes are terribly dry with other symptoms and quite normal when I'm feeling ok) - brain fog - clumsiness (easier to falter) - crushing fatigue at night - unrestful sleep - and, the real peach, anxiety: crying jags (I may start crying for sad things which normally I wouldn't even think about) and crushing anxiety, mostly about my own health but also for family, pets, work, whatever. All this, I discovered, is fairly "normal" for many women my age or older. Quality of life plummets and doctors are startingly unhelpful for the most part.

 

I have started a homeopatic therapy, although I'm rather doubtful about it, because I do not want to go on a hormone replacement therapy - for now. I would really appreciate your thoughts on the relationship between menopause and celiac disease!

alesusy


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#2 cyclinglady

 
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Posted 12 July 2013 - 10:02 AM

I'm 51 and have been having perimenopausal symptoms since I was 40 (dx by MD).  I've had every possible symptom you can have over the last 10 years.  The migraines were just as you described (sometimes I felt like I  was in a bubble while people were talking to me) and I was the type of person to never have a headache.  I started at 40 with night sweats, so bad that I got up twice to change my nightgown, dry my hair and put fresh beach towels on my bed.  I kept a stack of them on my bedside table.  My sleep was so disruptive that I was exhausted and taking care of a baby (this started six months after my daughter's birth).  I kept thinking it was the waterproof mattress protector, but tests showed perimenopause. 

 

When the symptoms became overwhelming, quality of life diminished, and my husband complained, I went on bio-identical hormones (prescribed by my MD).  When things got better, I'd stop until another wacky symptom showed up (e.g. 30 day periods and becoming so anemic that they wanted to give me transfusions).

 

Now, I'm six months, period free, and possibly into menopause.  I'm not taking hormones and am only dealing with periodic hot flashes and hopefully shrinking fibroids.

 

I had periods of anxiety, but worse, a bit of irrational rage.  Fortunately, I found that my cousins had the same issues!  "What???? Why is this sock laying in the middle of the living room floor?" and I'd rant for minutes and at the same time, I'd tell myself to calm down, but I couldn't (I guess I'd keep my cool at work or school, though!)

 

Cancer doesn't run in my family -- just heart, diabetes and autoimmune disorders, so hormones were great for me.  I'd go back on them if I need to.

 

I thought my shoulder tension was a result of celiac disease and it has gone away, but it may have been perimenopausal.

 

Hope this helps!


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#3 pricklypear1971

 
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Posted 12 July 2013 - 01:53 PM

I am not familiar with the effects of Celiac disease on menopause; however, I am quite familiar with the negative effects autoimmune disease has on the hormonal and adrenal systems.

As my ND explains it, autoimmune diseases stress the body (thus the adrenals). Since the adrenals do part if the hormone balancing before menopause (and almost all after), supporting the adrenals in the presence of autoimmune disease is very important.

I also have Hashimotos, so my take on hormones is a bit skewed - but let's just say that mine are out if whack, my adrenals are exhausted, and the overall effect is not pleasant. I have also had rounds of steroids, and that was extremely unappreciated by my adrenals.

I am on DHEA, topical natural progesterone, and adrenal cortex along with more t3...and I'm feeling better. I could not have done it without the progesterone cream, or the additional t3 (which may still be increased), and the adrenal cortex does help. I think the DHEA does, too.

Anyway, I hated the idea of taking all of the above (except thyroid meds) and it took time to get used to it...but I am healthier for it. And I am also in iron, d3, multi, selenium, and probably a few others I'm forgetting.

So, I know how it feels to be told to take hormones and hate the thought of it, and fight it... But hey, sometimes, it beats the heck out of being miserable.
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#4 alesusy

 
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Posted 13 July 2013 - 01:09 AM

thank you both for your insights

I will see how it goes this month. HRT or at least a progesterone cream would require that my hormones tests show an imbalance, which they didn't last month, when I had the perfect cycle for the  first time in six months. Since these tests are quite expensive I'm not ready to undergo them again.

 

I'm sure the relationship between hormones and autoimmune disease is there. Cyclinglady, did you really get aura migraines with colored flashes in perimenopause? Mine are painless. I heard other people who did but never actually talked with anybody who did - tell me about your experience....

alesusy


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#5 cyclinglady

 
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Posted 13 July 2013 - 10:47 AM

thank you both for your insights

I will see how it goes this month. HRT or at least a progesterone cream would require that my hormones tests show an imbalance, which they didn't last month, when I had the perfect cycle for the  first time in six months. Since these tests are quite expensive I'm not ready to undergo them again.

 

I'm sure the relationship between hormones and autoimmune disease is there. Cyclinglady, did you really get aura migraines with colored flashes in perimenopause? Mine are painless. I heard other people who did but never actually talked with anybody who did - tell me about your experience....

alesusy

Humm.....it's been about 6 years since it happened, but I did have a killer headache that lasted for two days.  I was extremely sensitive to light and noise.  Prior to it occurring I recall that I felt like I was in a bubble.  I lost peripheral vision, couldn't hear or process what people were saying (it happened at work and thankfully not during a meeting).  I can't remember weird vision problems.  This lasted less than one hour.  Then I got the actual migraine.  This only occurred once, because my family couldn't tip toe around the house for my benefit.  I do recall my husband recommending that I go back on HRT treatment and I did!  My Mom got migraines all the time, but I never did. 

 

Like many perimenopausal symptoms, this one came and went quickly.  HRT really did help.  I started with just progesterone, but later added estrogen too.  My insurance wouldn't cover the bio-identical hormones that my local compounding pharmacy made for me, but it was well worth paying cash for them!  There's a patch that does contain bio-identical estrogen/progesterone but I didn't like it.  I swim a lot and it was a hassle keeping it on and the adhesive was yucky, but insurance covered that one. 


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#6 dilettantesteph

 
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Posted 14 July 2013 - 05:42 AM

I am going through perimenopause right now and I'm not sure that I am having any symptoms.  I'm maybe getting hot flashes when I drink coffee, but it's been hot here and when the house is 82 and your drinking coffee, I would think it normal to get a bit hot, so I'm not sure.  Some of the symptoms you mention sound like ones I get from trace gluten exposure.  These include:  Tension headaches. Aura migraines with no pain,  loose stools - aches in legs - dizziness - slight nausea - lowered, blurry  vision,  brain fog - clumsiness (easier to falter) - crushing fatigue at night - unrestful sleep - and, the real peach, anxiety: crying jags  Right now I have a good diet and am not experiencing them.

 

I am in the super sensitive category as diagnosed by my GI.


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#7 cyclinglady

 
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Posted 14 July 2013 - 06:27 AM

I am going through perimenopause right now and I'm not sure that I am having any symptoms.  I'm maybe getting hot flashes when I drink coffee, but it's been hot here and when the house is 82 and your drinking coffee, I would think it normal to get a bit hot, so I'm not sure.  Some of the symptoms you mention sound like ones I get from trace gluten exposure.  These include:  Tension headaches. Aura migraines with no pain,  loose stools - aches in legs - dizziness - slight nausea - lowered, blurry  vision,  brain fog - clumsiness (easier to falter) - crushing fatigue at night - unrestful sleep - and, the real peach, anxiety: crying jags  Right now I have a good diet and am not experiencing them.

 

I am in the super sensitive category as diagnosed by my GI.

Hot flashes are a funny sensation.  I start to fell weird, a sense of something swelling or building and then I feel super hot.  Beads of sweat appear on my upper lip and I get drenched.  Ugh!  Luckily this was one perimenopausal symptom that I didn't get until the end. 

 

It is confusing that so many symptoms for Celiac, perimenopause, thryroiditis, or whatever seem to be the same or overlap.  I thought I was getting hot flashes last year, because I always felt so hot, but it turned out that my thyroid was running hyper.  Now, I can tell the difference. 

 

In any case, I hope your transition will be nice and smooth!


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#8 dilettantesteph

 
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Posted 15 July 2013 - 08:51 AM

Hot flashes are a funny sensation.  I start to fell weird, a sense of something swelling or building and then I feel super hot.  Beads of sweat appear on my upper lip and I get drenched.  Ugh!  Luckily this was one perimenopausal symptom that I didn't get until the end. 

 

It is confusing that so many symptoms for Celiac, perimenopause, thryroiditis, or whatever seem to be the same or overlap.  I thought I was getting hot flashes last year, because I always felt so hot, but it turned out that my thyroid was running hyper.  Now, I can tell the difference. 

 

In any case, I hope your transition will be nice and smooth!

 

Thanks for the description of a hot flash.  I guess I haven't gotten one yet.  What do you mean you didn't get them until the end?  Does that mean after you haven't had a period for one year?  How long did they continue?


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#9 alesusy

 
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Posted 17 July 2013 - 10:24 AM

I am going through perimenopause right now and I'm not sure that I am having any symptoms.  I'm maybe getting hot flashes when I drink coffee, but it's been hot here and when the house is 82 and your drinking coffee, I would think it normal to get a bit hot, so I'm not sure.  Some of the symptoms you mention sound like ones I get from trace gluten exposure.  These include:  Tension headaches. Aura migraines with no pain,  loose stools - aches in legs - dizziness - slight nausea - lowered, blurry  vision,  brain fog - clumsiness (easier to falter) - crushing fatigue at night - unrestful sleep - and, the real peach, anxiety: crying jags  Right now I have a good diet and am not experiencing them.

 

I am in the super sensitive category as diagnosed by my GI.

Hi Dilettantesteph

You are the first person to tell me about an aurea migraine with no pain from gluten trace exposure. Are we taking about the same thing? Colored haloes all around object, fragmented vision lasting for about 20-40 minutes?

thanks


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#10 cyclinglady

 
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Posted 17 July 2013 - 10:38 AM

Thanks for the description of a hot flash.  I guess I haven't gotten one yet.  What do you mean you didn't get them until the end?  Does that mean after you haven't had a period for one year?  How long did they continue?

Went through perimenopause for 12 years!   I have been period free for the past six months.  That's when the hot flashes started.  During years 10 and 11 I had wacko period cycles and heavy bleeding (my thyroid was acting up during this time).  I have six months to go without a period before I'm officially through menopause.  


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#11 dilettantesteph

 
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Posted 18 July 2013 - 03:28 AM

Hi Dilettantesteph

You are the first person to tell me about an aurea migraine with no pain from gluten trace exposure. Are we taking about the same thing? Colored haloes all around object, fragmented vision lasting for about 20-40 minutes?

thanks

 

I got visual aura migraines with no pain regularly for about 30 years before diagnosis.  They were as described in this Mayo Clinic site and video: http://www.mayoclini...ne-aura/MM00659

Since diagnosis almost 6 years ago, I've had one and that was after a long period of trace glutening.  It took me quite awhile to figure out the source of the gluten with elimination/challenge diets.

 

There have been studies that reveal a connection between celiac disease and migraines: 

http://www.celiaccen...es/Migraine/52/

http://celiacdisease...nd-Migraine.htm

http://www.ncbi.nlm....pubmed/23126519


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#12 dilettantesteph

 
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Posted 18 July 2013 - 03:29 AM

Went through perimenopause for 12 years!   I have been period free for the past six months.  That's when the hot flashes started.  During years 10 and 11 I had wacko period cycles and heavy bleeding (my thyroid was acting up during this time).  I have six months to go without a period before I'm officially through menopause.  

 

My goodness you have had it rough.  Are the hot flashes still going on?


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#13 Fire Fairy

 
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Posted 18 July 2013 - 05:27 AM

Hi Dilettantesteph

You are the first person to tell me about an aurea migraine with no pain from gluten trace exposure. Are we taking about the same thing? Colored haloes all around object, fragmented vision lasting for about 20-40 minutes?

thanks

Hi I'm chiming in as a Celiac and Migraine sufferer. 90% of my Migraines disappeared after going gluten-free. Migraines require two triggers I spent over a decade knowing that and avoiding all the known triggers I possibly could but I did not realize gluten was a trigger. Two of my triggers are my hormones fluctuating during PMS (or PMDD) and barometric pressure changes (in other words an on coming storm). Every single time a storm front came in and every month just before my period I was guaranteed a migraine. I actually spent one third of my last year before being recognized as a Celiac with Migraine. Last week was very stressful as Monday my mom had to be sent by ambulance to the hospital. On Wed night I swelled up like a basketball in my abdomen area. When I got up Thursday morning I felt awful, it was mostly just a general feeling of doom with awful nausea. And then more symptoms piled on. It was a migraine without the head pain. I was very weak feeling and I could tell I was near passing out at work (I have a lot of experience with passing out when I was younger). I went to the breakroom and sat and realized all the notices on our bulletin board were blurry. I get olfactory hallucinations sometimes with Migraines which I think is a form of Aura. Not sure if I had it this time as I work in a place were I'm prone to dismiss some smells. I had to go home. A few hours later a strong storm came in. I recognized the next day I had cross contaminated (?) myself Wed by giving a therapy dog a biscuit and not being able to wash my hands immediately afterwards.

 

At any rate in my case both hormones and gluten trigger migraines.

 

Now I have a question, since I know there are a few ladies reading who have or are experiencing menopause at some stage. Many months during my period I drop large globs of blood. So large that it fills an extra long extra absorbing pad to the point that if I don't literally race to the restroom it goes through to my panties and then my jeans. My pads will be totally blood red and heavy and it's from one glob of blood. Is that just a symptom of PMDD, is it the coming of menopause or is this something I should be even more concerned about. Someone suggested it sounded like I was hemorrhaging. It's been going on for several years now. It doesn't happen every month but it happens more months than not. Thoughts?


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#14 kareng

 
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Posted 18 July 2013 - 05:36 AM

Hi I'm chiming in as a Celiac and Migraine sufferer. 90% of my Migraines disappeared after going gluten-free. Migraines require two triggers I spent over a decade knowing that and avoiding all the known triggers I possibly could but I did not realize gluten was a trigger. Two of my triggers are my hormones fluctuating during PMS (or PMDD) and barometric pressure changes (in other words an on coming storm). Every single time a storm front came in and every month just before my period I was guaranteed a migraine. I actually spent one third of my last year before being recognized as a Celiac with Migraine. Last week was very stressful as Monday my mom had to be sent by ambulance to the hospital. On Wed night I swelled up like a basketball in my abdomen area. When I got up Thursday morning I felt awful, it was mostly just a general feeling of doom with awful nausea. And then more symptoms piled on. It was a migraine without the head pain. I was very weak feeling and I could tell I was near passing out at work (I have a lot of experience with passing out when I was younger). I went to the breakroom and sat and realized all the notices on our bulletin board were blurry. I get olfactory hallucinations sometimes with Migraines which I think is a form of Aura. Not sure if I had it this time as I work in a place were I'm prone to dismiss some smells. I had to go home. A few hours later a strong storm came in. I recognized the next day I had cross contaminated (?) myself Wed by giving a therapy dog a biscuit and not being able to wash my hands immediately afterwards.

 

At any rate in my case both hormones and gluten trigger migraines.

 

Now I have a question, since I know there are a few ladies reading who have or are experiencing menopause at some stage. Many months during my period I drop large globs of blood. So large that it fills an extra long extra absorbing pad to the point that if I don't literally race to the restroom it goes through to my panties and then my jeans. My pads will be totally blood red and heavy and it's from one glob of blood. Is that just a symptom of PMDD, is it the coming of menopause or is this something I should be even more concerned about. Someone suggested it sounded like I was hemorrhaging. It's been going on for several years now. It doesn't happen every month but it happens more months than not. Thoughts?

 

 

I noticed this would happen if I had been in one position for a long time.  Like laying down and then getting up , or sitting and then standing.  Its like it was dammed up and the shift in the body position released it.


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#15 pricklypear1971

 
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Posted 18 July 2013 - 09:09 AM

Hi I'm chiming in as a Celiac and Migraine sufferer. 90% of my Migraines disappeared after going gluten-free. Migraines require two triggers I spent over a decade knowing that and avoiding all the known triggers I possibly could but I did not realize gluten was a trigger. Two of my triggers are my hormones fluctuating during PMS (or PMDD) and barometric pressure changes (in other words an on coming storm). Every single time a storm front came in and every month just before my period I was guaranteed a migraine. I actually spent one third of my last year before being recognized as a Celiac with Migraine. Last week was very stressful as Monday my mom had to be sent by ambulance to the hospital. On Wed night I swelled up like a basketball in my abdomen area. When I got up Thursday morning I felt awful, it was mostly just a general feeling of doom with awful nausea. And then more symptoms piled on. It was a migraine without the head pain. I was very weak feeling and I could tell I was near passing out at work (I have a lot of experience with passing out when I was younger). I went to the breakroom and sat and realized all the notices on our bulletin board were blurry. I get olfactory hallucinations sometimes with Migraines which I think is a form of Aura. Not sure if I had it this time as I work in a place were I'm prone to dismiss some smells. I had to go home. A few hours later a strong storm came in. I recognized the next day I had cross contaminated (?) myself Wed by giving a therapy dog a biscuit and not being able to wash my hands immediately afterwards.

At any rate in my case both hormones and gluten trigger migraines.

Now I have a question, since I know there are a few ladies reading who have or are experiencing menopause at some stage. Many months during my period I drop large globs of blood. So large that it fills an extra long extra absorbing pad to the point that if I don't literally race to the restroom it goes through to my panties and then my jeans. My pads will be totally blood red and heavy and it's from one glob of blood. Is that just a symptom of PMDD, is it the coming of menopause or is this something I should be even more concerned about. Someone suggested it sounded like I was hemorrhaging. It's been going on for several years now. It doesn't happen every month but it happens more months than not. Thoughts?


According to my ND that's a symptom of estrogen dominance and low progesterone. After adding more progesterone cream and upping my t3 meds my periods are finally only 5 days long and minimal clotting.

Btw, I get the barometric pressure headaches. And normally, only in winter. Though, since my FL trip (and apparent low level gluten exposure), I've been having allergy and barometric symptoms in the summer...which sucks big lemons.
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Probable Endometriosis, in remission from childbirth since 2002.
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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!





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