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No Period


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13 replies to this topic

#1 Ems1984

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Posted 21 April 2009 - 05:04 PM

Hi people,

I have been trying to find some info regarding amenorhea and celiacs, and havent been overly successful...

i havent had my period for an entire year, i have been tested for Polycystic Ovary Syndrome which i dont have thankfully. the only other possibility the docs have given me is that i am underweight or have a low body fat percentage. I am currently 58kgs and 175cm tall so im actually not that underweight.

i have been on the gluten-free diet for about 3 weeks now and am starting to acknowledge a whole bunch of symptoms that may be related to celiac disease and was wondering if anyone can shed some light on the existence of amenorrhea in those who are celiac...

Ta,
Em :)
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#2 kellylynn

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Posted 24 April 2009 - 05:28 PM

I have had amenorrhea for over 10 yrs. and recently found out about my gluten intolerance (as of Jan 09). No news regarding a possible connection yet, but I do feel much better overall. I'm thankful that the the amenorrhea has at least kept me pushing to find out other health issues (gluten intolerance, osteopenia, hypothyroidism, etc.).
I'll keep you posted.
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#3 jerseyangel

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Posted 24 April 2009 - 05:36 PM

There is a connection--I've run across it several times while researching.

Here's a site that mentions it--

http://www.webmd.com.../celiac-disease

And another--

http://digestive.nid...es/pubs/celiac/
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Patti


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"When people show you who they are, believe them"--Maya Angelou

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#4 mhb

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Posted 12 August 2009 - 11:43 AM

Hi, I never find much explanation of the connection between ammenorhea/infertility and gluten, but the association is commonly referred to. I don't think they understand the connection, but the theory is that gluten mounts an autoimmune reaction somehow affecting reproductive hormones, perhaps affecting a gland that produces them? I was treated for PCOS for years. Went off those meds same time I went off gluten. Voila, regular periods. it seems when I get get glutened my period is late, but within a week because other than errors eating out, I'm gluten free over a year now with timely periods. Turned out the casein in dairy caused the acne that was also attributed to PCOS, so I'm off dairy too.
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#5 RideAllWays

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Posted 12 August 2009 - 09:58 PM

I have weird menstruation..I'm very irregular and often skip a month, but whenever I get glutened i get my period that day, for that day only, with random spotting for about a week after. i can't figure it out! I'm on birth control to try and regulate my cycle but so far it hasn't really worked...
Sorry that wasnt really helpful, just mentioning it incase it adds a piece to the celiac puzzle.
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#6 babysteps

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Posted 13 August 2009 - 10:00 AM

I think the combo of celiac & low body fat together may be part of the explanation.

I am at the lower edge of 'normal' BMI, and prior to going gluten-free if I was particularly physically active (dance classes or fitness camp or whatever) I would not have my period.

I don't know if there are current studies, but my late grandmother (born 1895) once told me that she heard of a study linking low body fat to skipping periods.

What I'm trying to say is that fat may be as critical as (or more than) weight, and since celiac can contribute to fat malabsorption, a celiac at or below the normal end of weight charts may tend to have less fat than a non-celiac of same height & weight. So that much more likely to skip a period. My at-home 'fat %' scale, if to be believed, says I have gone from 14-15% body fat to 22% with no change in weight or measurements since going gluten-free. 22% isn't exactly high, but it's a lot higher (better, imho) than 15% :) And I haven't skipped a period since going gluten-free either.

Good luck pursuing your health!
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gluten-free (except unintentionally) from 7 Dec 2007
3 gluten-free cousins and counting (1 gold standard, 1 pos blood/no endo, 1 self/dietary diagnosed)
suspect mother was celiac (also, cousin suspects my mother's twin is celiac)

Feb 08 testing 'normal range' for gluten antibodies, IBD and food allergies
Staying off gluten - dietary reaction is compelling for me!

"Hi, I'm the gluten-free diner at your table."

#7 Korwyn

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Posted 13 August 2009 - 12:34 PM

Hi people,

I have been trying to find some info regarding amenorhea and celiacs, and havent been overly successful...

i havent had my period for an entire year, i have been tested for Polycystic Ovary Syndrome which i dont have thankfully. the only other possibility the docs have given me is that i am underweight or have a low body fat percentage. I am currently 58kgs and 175cm tall so im actually not that underweight.

i have been on the gluten-free diet for about 3 weeks now and am starting to acknowledge a whole bunch of symptoms that may be related to celiac disease and was wondering if anyone can shed some light on the existence of amenorrhea in those who are celiac...

Ta,
Em :)


Yes there is. Amenorhea and both male and female infertility have been linked to celiac disease and GI. According to 'Recognizing Celiac Disease' in Appendix B (Symptoms and Associated Conditions) both of these conditions have been linked to untreated celiac disease and may respond well to a strict gluten-free diet. There is also some associated research I ran across linking soy intolerance as well but that is even less studied than the celiac disease linkage. :(
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Undiagnosed for 20 years since first symptoms.
March 2009 - Negative Blood work
April 24, 2009 - Gluten-free
April 29, 2009 - Notably positive response to gluten-free Diet.
May 2, 2009 Dairy Free
May 6, 2009, Soy Free
May 27, 2009 Enterolab Results: Positive Anti-gliadin IgA, tTG IgA, Casein, HLA DQ2.2, HLA DQ8
June 4, 2009 Refined sugar free (except Raw Honey, pure Maple syrup)
June 29, 2009, Dad diagnosed Celiac by GI specialist via blood work and dietary response.
July 2009, Dad's gene test: double DQ8! Thanks Dad - I'll try to get you something nice for Christmas! :)
August 8, 2009 Really Soy free this time - Thanks Blue Diamond for the soy lecithin in the almond milk! :(

#8 gfquestion

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Posted 08 September 2010 - 01:54 PM

I have not had my period for three years. The doctors never knew why, despite their tests. At that point I also started to lose weight and then all of a sudden got outrageously hungry all the time no matter what I ate and gained a lot of weight. So i have been underweight, then gaining fifty pounds, up to the normal range for my height, and still no period. I am waiting for my endoscopy to commit to gluten free living. I am so done with this uncertainty.
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#9 ravenwoodglass

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Posted 08 September 2010 - 02:46 PM

I have not had my period for three years. The doctors never knew why, despite their tests. At that point I also started to lose weight and then all of a sudden got outrageously hungry all the time no matter what I ate and gained a lot of weight. So i have been underweight, then gaining fifty pounds, up to the normal range for my height, and still no period. I am waiting for my endoscopy to commit to gluten free living. I am so done with this uncertainty.


Please do start the diet the day the endo is done. False negatives do happen with those so you need to do a dietary trial no matter what the results. Your periods may come back after you have been gluten free for a while.
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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)

#10 sb2178

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Posted 08 September 2010 - 05:25 PM

Yes-- and I think I finally have a "normal" cycle for the first time ever with the lovely gluten free diet (formerly light/skipping/weird intervals). No promises yet, but it's looking likely.

Low body fat definitely leads to issues. Under 15-16% is generally considered to be bad for fertility, as is over... 35% (?). High activity levels are also a contributor. Home scales can be kinda inaccurate, but are useful for noting change as long as you are consistent when you use it (am, pre food, pre shower, pre exercise is best).
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2/2010 Malabsorption becomes dramatically noticable
3/2010 Negative IgA EMA; negative IgA TTG
4/2010 Negative biopsy
5/2010 Elimination diet; symptoms begin to resolve on gluten-free diet round two (10 days)
5/2010 Diagnosed gluten sensitive based on weakly positive repeat IgA & IgG TTGs and dietary response; decline capsule endoscopy.

Now, what to do about my cookbook in progress? Make it gluten-free?

#11 Chakra2

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Posted 10 September 2010 - 06:22 PM

My GI doctor recommended "Celiac Disease for
Dummies" and it mentions male and female infertility and period problems several times in no uncertain terms. I was skeptical about this particular book but have actually gotten a lot out of it. Might be helpful if you're trying to learn more. Good luck !
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#12 CaraLouise

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Posted 11 September 2010 - 04:27 AM

I have not had a period for the last 5-6 years and I am only 25. The doctors have diagnosed me with hypothalamic dysfunction, basically my brain doesn't work right. Good luck.
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#13 Coolclimates

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Posted 15 September 2010 - 03:59 PM

I'm having the opposite issue: my periods are coming more and more often, like every 3 weeks. It's a drag because I'll start one, and 3 weeks later (from the first day of the previous period), I'll get one again! Mine have always been regular, but never this close together. Any ideas?
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#14 joeywants

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Posted 16 March 2013 - 07:00 AM

Hi people,

I have been trying to find some info regarding amenorhea and celiacs, and havent been overly successful...

i havent had my period for an entire year, i have been tested for Polycystic Ovary Syndrome which i dont have thankfully. the only other possibility the docs have given me is that i am underweight or have a low body fat percentage. I am currently 58kgs and 175cm tall so im actually not that underweight.

i have been on the gluten-free diet for about 3 weeks now and am starting to acknowledge a whole bunch of symptoms that may be related to celiac disease and was wondering if anyone can shed some light on the existence of amenorrhea in those who are celiac...

Ta,
Em smile.gif

 

Hi there,

I didn't have my period for over 6 years (I am currently 33 years old).  I decided to adopt a wheat free/gluten free lifestyle about 2 months ago and finally got my period a few days ago.  I have been to 7 or 8 doctors, several ultrasounds, MRIs, been put on two different birth control pills etc.  Giving up wheat was the only thing that changed things for me.  


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