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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

No Period
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14 posts in this topic

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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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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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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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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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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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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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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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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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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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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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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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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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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    • How do you know what's causing what?
      I am in same boat, yesterday my stomach was churning and bloated and I don't know what the cause was.  How about keeping a food diary? Just note what you ate and how you feel. A few days may be sufficient to discern a pattern, either some rogue product or a previously unknown intolerance. I have read that after gluten is removed further intolerances which were hidden can become apparent.  I don't know whether you could cut yourself some slack from a full vegan approach whilst your body heals? If not, maybe you could substitute say milk with coconut milk or similar to give your body a break whilst keeping calcium levels high? If you join coeliac uk you can check your sauces etc on their gluten-free database, they'll also send you a book which became my bible until I got a hang of which brands I could eat safely. Finally, have you excluded cross contamination from pots and pans, toasters, shared condiments etc?  Good luck!
    • Blood results - odd
      My results were similar – Low ferritin but normal B12. Although my ferritin levels were low, my Iron serum levels were normal. So might be worth getting your iron levels checked out to see if you have any deficiency in Iron. Also I was deficient in Vitamin D, which is perhaps more of a problem in England rather than the US - Our milk isn’t supplemented with vit D and we obviously have less sunshine.
    • How do you know what's causing what?
      Hi Kam, If you are going to continue the celiac testing with an endoscopy, you need to keep eating gluten until it's done. It can be hard for vegetarians to keep their vitamin D levels up.   This Vitamin D  Council link has some good info on ways to boost your levels. https://www.vitamindcouncil.org/about-vitamin-d/
    • Blood results - odd
      Your ferritin was very low!  My result was a 2 when I was diagnosed.    I hard a hard time breathing and the fatigue was awful due to low hemoglobin levels.  But after going gluten free and taking iron for a few months, I quickly recovered from iron-deficiency anemia.  I still have hemologobin levels that are slightly below range due to Thalassemia which is genetic and my body has adjusted for it.   My B12 and folate levels are  super high.  My B12 is over 2000!  Yeah, I googled and ruled out cancers, etc.  Looks like some of us do not process man-made B12 often included in supplements.  I opted for natural sources of B-12 and folate and my levels have come down a bit.   Let us know your results.  Read the Newbie 101 section under "Coping" within this forum for tips.   Be patient.  It can take months, to years to feel good.  But it will happen!    
    • How do you know what's causing what?
      Welcome to the forum!   Well.....in theory you should be able to heal within a few months (grow new villi, etc.).  The reality is that it takes so much longer -- like a year or two (I kid you not!)  Why?  celiac disease can damage more than just the gut.  Depending on what was damaged (nerves, bones, etc) can impact healing time.  The gluten-free diet has a very steep learning curve.  It's not just giving up gluten.  It's avoiding cross contamination.  Becoming an expert in reading labels.  Learning to avoid foods processed on shared lines in a facility.  Then there are intolerances that most celiacs develop.  The most common ones is lactose.  Why?  The villi tips release the enzymes to digest lactose.  No villi tips?  Then you can not digest lactose.  Often this is temporary, but if you are one of the many adults in this world, you might already be lactose intolerant or might become so as you age.   Other intolerances that members often report include corn or soy.   Some celiacs react to oats, even gluten free.  So avoid oats for six months.  So, try cutting out dairy for a few days and see how you feel.  Then add in those items that have the least lactose:  hard cheese, butter, yogurt and see how you feel.   Avoid eating out for six months until you have seen some improvement.   Read our Newbie 101 thread under coping for more ideas!  Hope you feel better soon.   
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