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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.

Menstruation
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12 posts in this topic

Ok, I have a question but there is a lot of information so bear with me.

I have always had extremely bad menstrual cramps, so bad that I used to vomit or pass out.

I was told that I may have endometriosis and put on the pill when I was 16 to improve the symptoms (which worked). I have been on the pill for seven years and am ready to come off it. A few months ago I was diagnosed with celiac disease and have been gluten free ever since. My question is this: Could the two be related? Has anyone else out there experienced this? Now that I am gluten free could I go off the pill without my symptoms reoccurring?

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I don't know of any scientific studies

but I too used to have D/vomit & almost pass out from pain w/menstrual cramps - not every month, but maybe 2 to 4x/year; other months just really bad cramps

now that am gluten-free, haven't had the D/vomit combination - still have cramps, but much milder. Also my breast soreness during PMS is much milder/almost gone (before going gluten-free, had been getting increasingly worse).

was on birth control, but haven't been for several years (and yes, the birth control did eliminate the D/vomit combination while I was on it)

I personally think gluten sensitivity, hormones & menstrual cycles are all linked somehow, and that I am more sensitive to gluten during PMS and menstruation. Just one person's experience. (There is a semi-recent theory that one significant purpose of menstruation is to 'clean' the body - get rid of any bugs living in the reproductive organs, etc. - could tie in to body trying to rid itself of gluten??) My drs tell me my uterus is 'tipped backwards' - don't know if that makes a difference either.

good luck, and may pain become less frequent in your life!

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Ok, I have a question but there is a lot of information so bear with me.

I have always had extremely bad menstrual cramps, so bad that I used to vomit or pass out.

I was told that I may have endometriosis and put on the pill when I was 16 to improve the symptoms (which worked). I have been on the pill for seven years and am ready to come off it. A few months ago I was diagnosed with celiac disease and have been gluten free ever since. My question is this: Could the two be related? Has anyone else out there experienced this? Now that I am gluten free could I go off the pill without my symptoms reoccurring?

I've seen quite a few sites that linked severe cramps and endometriosis to celiac disease try searching on google with keywords "celiac endometriosis" and you should find some. I had severe cramps starting about a year after i started menstrating. it was really horrible... I got a laparoscopy done to look for endometriosis when I was 23 cause I couldn't get pregnant (subfertility and infertility are also linked to celiac) anyway didn't find anything but was able to get pregnant a few months later. after my first pregnancy the cramps came back again but after the 2nd pregnancy they were alot milder and after the 3rd pregnancy I only have to take tylenol now to keep them in check most of the time! don't know what it was about the pregnancies that made the cramps get less but I sure am glad! anyway, never was on the pill so don't know the answer to that one. but you could try it and it might actually work!

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I always had horrible cramping growing up with my periods :huh: I would just curl up into the fetal postion and cry. In my later teens my periods actually stopped and would be gone for a few months at a time. When I got married it was very hard getting pg. because I wasn't ovulating anymore (doc. said) I had to take medicins to make me ovualte and get periods. I was finally diagnosed a year ago with celiac disease and my periods returned to normal without any meds. :lol: I still get bloated, pms, and sore breats, and sometime mild cramping (all normal symptoms BTW) but, the pain is not near what it was before. Good Luck! I hope it helps!

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I was not getting my period at all..then I went gluten-free. Then I started getting every 45 days about. Then last month it was like 36 days and now this month it came after 22 days? BUT, no real cramps or breast tenderness or anything. Is this normal to get your period this soon and feel this good?!

I always had horrible cramping growing up with my periods :huh: I would just curl up into the fetal postion and cry. In my later teens my periods actually stopped and would be gone for a few months at a time. When I got married it was very hard getting pg. because I wasn't ovulating anymore (doc. said) I had to take medicins to make me ovualte and get periods. I was finally diagnosed a year ago with celiac disease and my periods returned to normal without any meds. :lol: I still get bloated, pms, and sore breats, and sometime mild cramping (all normal symptoms BTW) but, the pain is not near what it was before. Good Luck! I hope it helps!
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I didn't get my first period until I was 15 and was very irregular. No horrible cramps or anything though. When on birthcontrol I was regular, but off birthcontrol I can go sometimes 45 days, sometimes 30, then the next time 60 days inbetween. I have gone gluten free off and on for the last 9 months and notice off gluten I am much more regular.

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I read once that something to try if you have terrible periods - is not eating reproductive products of other animals: milk, eggs ... and probably avoiding other high hormone influencing foods like soy.

I have not tried it myself...well, at least not for long...and I've only every had intermittent cramps. Good luck to you.

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Thanks for all the replies ladies :)

I have decided to go off the pill, I haven't been gluten free for long but hopefully my periods won't be as bad now. Its really interesting to learn that celiac disease and endometriosis/fertility problems are linked (yet another sign that my doctors have managed to miss!). I guess I can always go back on the pill if I need to if I need to. I really enjoyed reading your posts, you have all been really helpful.

Thanks again:)

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I've always had extremely painful periods (though not so bad that I was vomiting) but birth control helped a lot. I went off BC temporarily and found that the pain wasn't as bad, but my period was much heavier than it was before I ever used BC. I don't know if that was an effect of the BC or something to do with being gluten free. But it was nearly as annoying as the horrible pain, so back on BC I went.

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In response to this...sounds a lot like me. How long do all of your periods last now that you are off BC? I feel like in addition to the abnormalities of their frequency, when they do come, they really only last for 2 days and then are pretty much nonexistant. They kind of trickle off for the next 3 - 5 days with nothing really there. Is that normal that they only last that long?!

I didn't get my first period until I was 15 and was very irregular. No horrible cramps or anything though. When on birthcontrol I was regular, but off birthcontrol I can go sometimes 45 days, sometimes 30, then the next time 60 days inbetween. I have gone gluten free off and on for the last 9 months and notice off gluten I am much more regular.
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In response to this...sounds a lot like me. How long do all of your periods last now that you are off BC? I feel like in addition to the abnormalities of their frequency, when they do come, they really only last for 2 days and then are pretty much nonexistant. They kind of trickle off for the next 3 - 5 days with nothing really there. Is that normal that they only last that long?!

They last about 5 days...start with a a really light day, a couple of days heavier and then really light the last couple. I think it is normal, and I also think as we get closer to menopause (I am 42 and could be hitting peri-menopause) things start to change a bit anyways...

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I never had too much pain but i have extremely heavy periods that caused me to be severly iron deficient. Depo provera helps, but it reduces bone density and i only have a BMI of 15, so abit worried. Because celiac disease causes vitamin deficiencies, i wonder if this may be the reason i dont stop bleeding?

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    • Will my doctor test me? So many symptoms...
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    • Weird Reaction
      Hi Richie, It definitely sounds like you got glutened.  Over here in the USA they can't label foods gluten-free if they are made from gluten ingredients, period.  So your barley drink would not be labeled gluten-free here.  A while back I read something about the testing for gluten in foods not being as accurate for detecting barley hordein as it is for wheat gliaden.  So the gluten-free testing (if they do any) that your drink maker does may not be reliable. Celiac disease is an autoimmune condition.  So the immune system starts reacting when it detects gluten and damages the gut lining.  An immune reaction is not like a food poisoning event, where most of the damage is only while the food is actually in your system and then ends.  An immune reaction can continue for weeks to months.  The immune system is really quite serious about protecting our bodies.  And since it is designed to detect and attack micro-organisms it reacts to tiny amounts of gluten. Wheat, barley, and rye are the main gluten grains that affect celiacs.  But some celiacs also react to oat gluten.  
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    • Weird Reaction
      I think, if all this is caused by glutening, it could be that it takes a while to work its way out of your system. I should explain about what I said about organic broccoli.   I don't have a problem with organic food,  in fact, I buy organic milk and carrots all the time, but I don't want to try organic broccoli in case it is the broccoli that is the problem, not the insecticide.    I meant to ask, are you a coeliac or is it non-coeliac gluten intolerance that you have?   I wonder what sort of support you get in Australia for these conditions once diagnosed?   Here in the UK I think the understanding is that if new gastro symptoms have lasted for more than six weeks it needs to be investigated.   I have found this very helpful advice because I do get odd twinges of pain and sometimes changes in bowel movements (sorry if tmi) but they rarely last more than a couple of weeks.   If they do persist I mention it to my gastroenteroligist and he follows it up.  I recently had a sigmoidoscopy for left sided pain and they found nothing.  Turns out it was to do with lactose intolerance, but I always imagine the worse!    
    • Will my doctor test me? So many symptoms...
      Welcome, @iwillmoveamountain! Of course you are not wrong to pursue getting testing for celiac. My advice is to drop that doctor and find a new one, preferably one who is celiac savvy, and who will listen to you and test you for the disease.  
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