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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.

PCOS And Celiac
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25 posts in this topic

My doc confirmed that I have polycystic ovaries. I explained to her that when I don't eat gluten & millet that I get my period. When I eat gluten and millet the opposite happens: I don't get my period at all.

My doctor says that there is no relationship between my diet and the absent periods, but I beg to differ. The minute I change my eating, my menstrual cycle is affected. Does anyone know whether there is indeed a connection between celiac and absent periods. If there is a connection, how does it happen? I'm insisting here that there is a connection because I see it happening, but it's hard when you doctor denies the relationship. Who is right????

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I would trust your body over your doctor!! Personally, I have the opposite reaction to gluten (and corn)... it makes my periods long and heavy. Before I stopped eating gluten I had been having painful abdominal cramps, bloating, and continuous spotting for about six months :( I went to my OB/GYNs office about it... once they ruled out infection they were out of answers.

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I have the opposite reaction to gluten (and corn)... it makes my periods long and heavy. Before I stopped eating gluten I had been having painful abdominal cramps

this is interesting...i didn't really get my period until i was 15 but when it finally regulated to every month, it was terrible. extremely heavy with terrible cramps. it was unbearable so my mom took me to the gyno and i was put on birth control. that helped tremendously and i've been "regular" for over 12 years now. i wonder what will happen when i go off BC eventually and continue not eating gluten? i have noticed it's lighter even still since beginning the diet 6 months ago.

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My endocrinologist initially told me that a low-carb diet is always recommended for PCOS patients.

When she diagnosed me with celiac (based on bloodwork and DH), she said, 'Hmmm, maybe the reason a low-carb diet works for PCOS is that it's low-gluten or no-gluten."

If your doctor doesn't see this, then maybe it's time to find another doctor, especially as yours doesn't seem to be interested in what YOU experience, and doesn't take you seriously. :ph34r:

I think your instinct is right on the mark; I don't think much of your doctor's instincts (if he even has any).

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I believe there is a connection, in my opinion at least. I missed my period for about 5 months prior to going gluten free (when my gluten intolerance symptoms were probably the worst in my life). I was tested for Celiac through one blood test (not the panel) and an endoscopy; my doctor said I didn't have Celiac but offered no other help (I'm getting a second opinion because the endoscopy showed blunted villi and muscosa atrophy). I decided to go gluten free on my own and what do you know....all of my symptoms subsided, including my period. I have been regular ever since going gluten free. Before I went gluten free, I went to my PCP who said I might have PCOS. I haven't been tested and didn't follow up with that though because for the last 5 or 6 months, my period has been regular. I really do think there is a connection, and it makes me question even more if I really do have Celiac. I know that gluten is affecting more than just my stomach.

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The connections between the female reproductive system and celiac are really poorly understood by doctors. There is a definate connection though and it has been noted in medical journals. Celiac can and does effect us. It can cause premature menopause, infertility and effect our ability to carry a baby to term when we do concieve. They don't know why but the correlation is there. One of the first things my OB/GYN said after my diagnosis was that my periods might return. They didn't but for many others they do.

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Hiya,

I didn't get my period for three years and had always attributed this to my polycystic ovaries. I went gluten free and now I get it every month...

Coincidence? Really??

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This just crossed my path from the National Foundation for Celiac Awareness. For those with stories..

3. The NFCA is developing a program related to women's health and wellness with a focus on reproductive health issues. Our goal is to escalate the recognition of celiac disease as a factor in several health issues facing women. Personal stories are an effective tool for relaying the true impact of this autoimmune disease. We invite you to share your story concerning women's health with us. Please send your stories to Nancy Ginter at ginter@CeliacCentral.org.

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This just crossed my path from the National Foundation for Celiac Awareness. For those with stories..

3. The NFCA is developing a program related to women's health and wellness with a focus on reproductive health issues. Our goal is to escalate the recognition of celiac disease as a factor in several health issues facing women. Personal stories are an effective tool for relaying the true impact of this autoimmune disease. We invite you to share your story concerning women's health with us. Please send your stories to Nancy Ginter at ginter@CeliacCentral.org.

Thanks so much for posting this info.

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i also have PCOS. on one of the pcos message boards im on there were a few articles about people with PCOS often having auto-immune diseases and the idea that maybe PCOS is also an auto immune disorder. i tried to find them but cant at the moment. anyway there are a lot of people on the PCOS bord that are celiac so there very well could be a connection.

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I think it's certainly possible (although unproven currently). The underlying cause of PCOS is insulin resistance and it is often treated with the diabetes drug Metformin. There have been a few studies linking PCOS with Hashimoto's so the autoimmune connection is definitely there. It's generally accepted that if you have one autoimmune disease you are prone to developing others.

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Interesting! - My doctor told me just the opposite, saying that

there absolutely is a link between PCOS and celiac. (It took

about five months from the point that I went gluten free, but

I haven't had cyst problems since them, - I use to get them

like clockwork, and sure don't miss them!)

If you consider that one of the symptoms of celiac is infertility,

then it shouldn't take too much of a leap to understand that

gluten can have a direct effect on the ovaries.

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Traditionl Chinese Medicine and Naturopathy both see a connection between diet and reproductive issues in both women and men. Why is it that allopathic medicine doesn't? I don't know but if you always remember this when working with an MD, you'll get a lot farther towards proper treatment and control of your care.

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*Gasp!*

I have been going through HORRID periods my whole life, and CLEARLY have hormonal issues besides that. Docs can't figure it out. They'll say it sounds like PCOS, but tests never show it. My menstrual cycle is like dying a horrid death every month! Now that I'm gluten-free, I wonder what will happen. (I'm only about 2 weeks into my gluten-free journey.)

Frankly, I've never been on a site where symptom after symptom is being addressed! Not just PCOS stuff, but everything. Exciting.

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I'm about 16 months gluten-free and had horrid periods before. It's taken a while but I don't experience the severe cramps, clotting or as heavy bleeding. On a scale of 0-10 with 10 being the worst pain/adverse menstrual problems I was 9.5-10 pre-diagnosis. Id' say I'm a 3 now and I'm out of my supplements.

I'm also perimenopausal at age 49 and not experiencing any new problems. It makes me wonder A LOT if all this BS about PMS, PMDD, etc, aren't varying degrees of GI. In the recorded history of food, wheat grains were viewed as poison for centuries. I really wonder if ANYBODY should eat wheat.

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Hey all,

I'm 25, and I started having serious health problems when I was 19. The first major symptom that doctors would pay attention to was the fact that my period almost totally stopped. I would get one maybe once every three to four months, and it would be TERRIBLE. The worst pain I've experienced in my life, to this day.

Doctor after doctor couldn't figure out what was wrong, so I started researching it myself, at at 21, I was firmly convinced that PCOS and/or Celiac Disease were the root of my problems. It took me years to find a doctor that put the entire picture together. Each GYN either looked at my hormone levels (which have never been that abnormal) or just my ovaries. Nobody tested my insulin and glucose to see if I was insulin resistant, until about a year ago. I saw the nurse practitioner in a new general medicine office, and after listening to my symptoms she was convinced that my self-diagnosis of PCOS and Celiac was 100% correct. She ordered the blood work and did the ultrasounds to confirm the PCOS, and sent me to a GI to be tested for Celiac. The GI did a full celiac panel (or so I thought), and said the results were negative. I didn't have Celiac. He did decide that I had IBS, and I've always disagreed with that diagnosis.

Since then, I've been put on metformin, and I still wasn't able to have periods on my own. More testing ensued. I had a hysteroscopy at the beginning of March this year, because my lining had built up so much, and I was put on birth control just before that. Now, almost two months after the surgery and just into my fourth continuous dose of BC (they instructed me to skip the placebos for now), I'm still having severe cramping and bleeding. I've been on BC before, and the issue was always that they didn't bring on periods. Never that I couldn't stop bleeding. I literally soaked a super size tampon in 20 minutes, and bled all over myself in the middle of the Chicago airport on Thursday last week.

Today I finally got in to see my doctor, and she seems to think that the GI doctor misdiagnosed the IBS, and I do in fact have Celiac, despite the negative blood work. She's sent me to a new GI. In the meantime, she wants me to stay on the BC and finish out this pack and take the placebos this time, and see what happens, since my bleeding has slowed to light spotting for now.

Throughout all of this, I've had two time spans in my life where I went totally gluten-free, and I always felt 200% better. My brain-fog lifted, and I felt like a real human-being again. My periods never totally squared themselves away, but the issues were much less severe, and almost all of my other symptoms went away.

Has anyone had a similar situation?

Is it possible that the blood work giving the negative result for Celiac was in fact wrong?

Any input is much appreciated!

Katie in South FL.

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The bloodwork will only tell you if you have almost TOTAL villous atrophy, not mild - many people (myself included) think that ANY degree of villi damage warrants going on a GFD. You may simply be Gluten Sensitive (I think they are starting to use the term Non-Celiac Gluten Sensitivity [NCGS] to describe this). However, if you feel better on a GFD, then by all means get on it and STAY on it - it certainly won't hurt anything!

You can also request a genetic test (HLA Typing for Celiac Disease) to see if you carry one of the genes that are known to be associated with celiac disease - if you have one of them, then you will have one more reason to stick with a GFD, regardless of your antibody test results.

My antibody tests were negative, but I carry one of the genes and had what I believe to be Dermatitis Herpetiformis - I wish I'd known about celiac disease a lot sooner! You are fortunate to have found out about this so early - trust your instincts on this, and don't let anyone tell you that you don't know what you are talking about.

Incidentally, my sister told me (right before she died) that one of her doctors "had to be good" (an opinion NOT shared by me), because she graduated from Harvard Medical School. My reply to her was that SOMEONE has to graduate at the bottom of the class - and who knows where ANY doctor ranked in their class (other than the doctor and their school)?

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this is interesting...i didn't really get my period until i was 15 but when it finally regulated to every month, it was terrible. extremely heavy with terrible cramps. it was unbearable so my mom took me to the gyno and i was put on birth control. that helped tremendously and i've been "regular" for over 12 years now. i wonder what will happen when i go off BC eventually and continue not eating gluten? i have noticed it's lighter even still since beginning the diet 6 months ago.

My sister and I both have PCOS, but have opposite symptoms. In me, it causes very heavy, lengthy periods that I must take BC to regulate. She has to take BC to even have a period at all.

After 15+ years, I decided that I don't want to spend the next 15-20 on the Pill, so I've had the Essure and Novasure procedures done. Starting in July, I won't have to worry about pregnancy anymore and I won't have heavy periods (maybe none at all) so I can discontinue BC. Yay!

Kate

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There is a link between PCOS and celiac. I am not sure why your doctor would say there isn't. having gluten sensitivity is the leading cause of infertility.

I have ammenorrhea and now since going gluten free i have periods.

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I was just diagnosed with PCOS a few days ago via hormone levels and ovarian ultrasound. However I am not your typical PCOS person. My BMI is 19 and I am not insulin resistant. I have had digestive issues for years and although I came up negative on a celiac blood test (I know they are not very reliable) my doctor wants me to go gluten free. She thinks that celiac might be causing my PCOS.

Has anyone found any medical literature on a connection between celiac and PCOS? I just did a quick lit search and was not able to find any.

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I too have pcos symptoms, not diagnosed but doc thinks I have it. High testosterone, ammenoreah (sp ???), and hypoglycemia. I am not a typical case either, 5'5" and 120 pounds, not typical high triglycerides either. But my doc thinks celiac may be the cause of this and lots of other typical celiac issues. My blood tests came back neg, but I'm starting on strict gluten-free diet anyway to rule it out. Celiac runs in my family too. Hang in there ladies! If tests are negative, it still might be a good idea to test out a strict gluten-free diet for several months to see if there's improvement. I'm finding this out with lots of research lately.

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I too have pcos symptoms, not diagnosed but doc thinks I have it. High testosterone, ammenoreah (sp ???), and hypoglycemia. I am not a typical case either, 5'5" and 120 pounds, not typical high triglycerides either. But my doc thinks celiac may be the cause of this and lots of other typical celiac issues. My blood tests came back neg, but I'm starting on strict gluten-free diet anyway to rule it out. Celiac runs in my family too. Hang in there ladies! If tests are negative, it still might be a good idea to test out a strict gluten-free diet for several months to see if there's improvement. I'm finding this out with lots of research lately.

I was diagnosed with PCOS before celiac and I still feel like celiac caused the PCOS symptoms. I don't have high triglycerides, too. In fact mine are low...64 on my last test. I've been gluten free for a few months and I thought that my period would come back since it started a little at first, but now it's gone again. I did get glutened a couple times, so that may be the problem. I'm on bc and I thought bc was supposed to regulate periods but I haven't had one for almost a year...just that little break through bleeding that I thought was a period coming back. My doc did a d and c to make sure nothing was wrong with my uterus and it was fine. Hopefully it will get better soon.

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I think it's certainly possible (although unproven currently). The underlying cause of PCOS is insulin resistance and it is often treated with the diabetes drug Metformin. There have been a few studies linking PCOS with Hashimoto's so the autoimmune connection is definitely there. It's generally accepted that if you have one autoimmune disease you are prone to developing others.

Very interested to hear the links to Hashimoto's. I have PCOS and there has been a tonne of research in the last decade, it's still pretty new knowledge to many docs that it's driven by insulin resistance. Lots of docs treat it with the birth control pill which is not good, it might make your cycle regular but it increases your risk of insulin resistance, diabetes etc. When I got diagnosed, it was all about getting me pregnant - which I don't want to be - and very little concern about the long term ramifications. My GP at the time knew that people with PCOS were more likely to get diabetes, but when I tested negative to diabetes that was the end for her when really, it's the insulin resistance now that's the issue because it will mean diabetes in twenty years time. I ended up chucking a big fit, researched, and found a specialist who seems to be pretty involved in research. I'm on metformin. We look at all the overweight people getting type 2 diabetes and it's all 'oh they need to lose weight' but what nobody points out is that IR makes it reallyfreakinghard to lose weight and that goes on for decades before you get diabetes. I feel like each day I'm fighting against the possibility, but at least I know the risks. But so many more people need to be screened - maybe if it were better linked to automimmune diseases, there'd be more testing. For what it's worth, I had regular periods, so it's not like I'm a classic case. Going gluten free has made no difference to my PCOS, but, knowing that most easily accessed high carb foods make me ill has made cutting them out much easier, so I'm seeing weight loss :)

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I used to get awful migraines with my periods before going gluten free. Also, my periods were not normal at all - I only realize this now that I'm having normal periods. When I was eating gluten, the were thick, and old and rotten looking (sorry if TMI). Now, no headaches, no vomiting, and normal flow / colour.

I agree with you SalmonNationWoman - I don't think ANYONE should eat wheat.

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I used to get awful migraines with my periods before going gluten free. Also, my periods were not normal at all - I only realize this now that I'm having normal periods. When I was eating gluten, the were thick, and old and rotten looking (sorry if TMI). Now, no headaches, no vomiting, and normal flow / colour.

I agree with you SalmonNationWoman - I don't think ANYONE should eat wheat.

My new internist (who is herself gluten-free but not celiac) says that NOBODY should eat gluten (except perhaps Asians with double DQ4).

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    • Newbie: mother to coeliac kids
      Well thank goodness the gluten eating is over for him now & he can begin the journey back to good health! Poor fella. He was so sick! Just a heads up --- he isn't going to feel better instantly but at least he's a kid & they heal faster as a general rule. Bone broth!!!! Yaaaaaaaaaaaaaaaayyyyyyyyyyyyyyyyy mom! That's really going to help him!   Do I recall correctly that you still have the 17 yr. old to go through testing yet?
    • Weird Reaction
      Hi Richard Glad you are feeling better!   Sorry - DX is an abbreviation for diagnosis.   Thanks so much  for the info about MSG, broccoli and IBS.  Like you say, there is v. little bad press about broccoli. My aunt, who is a farmer's wife, put forward another theory that it might not have been the broccoli itself but rather some insecticide a farmer sprayed on it.   I just can't bring myself to try organic broccoli however...  Thankfully cauliflower is fine.  I just can't figure it out as I thought they were the in the same vegetable family?  So maybe it is MSG. Regarding anemia, there can be a link with iron anemia and anxiety. http://www.livestrong.com/article/471225-iron-anxiety/ And I was definitely breathless before my diagnosis; I remember finding myself  walking up a hill behind a  huge crowd of friends on a church walk, and many of them were at least 20 years older than me, and wondering why I was in last place! My B12 levels were very low at DX and I found B12 supplements helped enormously with anxiety.   I remember drinking Berroca and feeling so much better within hours of drinking it, on more than one occasion, before even understanding the link. I have just been told however that I can't take any more iron because my hemoglobin is on the high side.  It is a good thing my doctor was monitoring my supplementation as I gather too much iron can be dangerous.  Have you been told to supplement by your doctor?  If you are supplementing make sure you get your levels monitored. All the very best - and welcome to the forum!    
    • Weird Reaction
      Thank  you Flowerqueen and Cristiana for your replies. I'm actually feeling much better today. I got my appetite back yesterday lunchtime (a few hours after I typed the original post) and managed to keep in/hold down some chicken and lettuce!!! I also had a "fat" coffee (as I call it) before work with MCT Oil and butter (your probably going "yuk" right now but it's really nice...really haha) and started feeling a bit better after that. The nausea went away almost immediately after that although just the thought of having all that fat nearly made me sick but I just wanted to get back to normal asap. I usually have a lot of fat in my diet anyway which is normal for me so the coffee choice isn't unusual. Plus it was also the third day which was when I started feeling better after the first time. I didn't eat til lunchtime and I was good and hungry by then so I knew I was coming out of it. That nausea and trembling feeling is something I don't want ever again. I think after the workout and tearing down muscle tissue (which is a form of stress) and then not being able to hold the nutrients in for repair affected my nervous system. My theory only but to me it makes sense. Although Vitargo also comes in flavors I always get the Natural / Unflavored one so the barley is the only ingredient. As for there being something wrong with that particular batch, well, you be on to something there. Also I'm not knocking the product because as I said, I have used it before and it did exactly what it was supposed to do. But, I will never have it again. Cristiana, my last blood test revealed I had slight anaemia which really surprised me with the amount of red meat I've eaten during my life and the anxiety thing is also new as I'm usually a happy, positive person. Life is good but after this recent reaction I think it is an indirect cause of the glutening. I'm also surprised at how sensitive I've become to it and how quickly. Also what is DX? I also follow a FODMAP eating plan (I can give you more info if you haven't heard of it) which also eliminates certain foods. It's a plan directed mostly at IBS but is well worth looking into if you are suffering any gut health, digestion issues or any ailment you may have which you can't get to the bottom of. Broccoli was one of the foods which I have cut back on and I've eaten HUGE amounts of broccoli so it is a superfood for some but apparently not for others. (I even think I read somewhere it has MSG naturally in it) It's hard to find any bad articles on broccoli so this also really surprised me. It also answered a few other questions I had. Many, many thanks again to you both for your replies. It actually settled me just reading them. I'm glad I found these forums so I don't think i'll be a stranger around here for long.   Richard
    • Confused
      Okay, I get that you are not going to follow the advice from some stranger on the internet, but please read the links that I gave you.  Your doctor is not following the standard level of care.  I am dead serious.  I have Kaiser.  My own GP doesn't have a clue about celiac disease, but my Kaiser GI does.  Please, I urge you to get properly diagnosed.  All celiac testing requires you to be on a gluten diet.  If you go gluten free even for two weeks (it will take time to get the referral and appointment), it will mess up the tests.  Your GI will put you back on a gluten diet (called a gluten challenge) for 8 to 12 weeks.    Chances are (almost 100%) you will feel more miserable!  That will just delay your diagnosis.   Symptoms not bad you say?  I had pretty severe anemia, but no tummy issues.  Two months after my diagnosis, I fractured my back DOING NOTHING!  Yep, I have osteoporosis from undiagnosed celiac disease and I am an athlete!   Please take this seriously!    
    • Silent Celiac or Non-digestive symptoms
      Oh, you might learn how to tell if you had been glutened.  I just had anemia as my main symptom.  I did not have any tummy issues at all.  I was in shock when my doctor even suggested testing me for celiac disease!   Glutenings can vary as we are all different.  For some it is just a few days, others a few weeks and others months (that would be me).  My last official glutening as supported by follow-up antibody testing lasted for three months.  Guess what?  I had vomiting, abdominal pain, the works!  Funny how celiac disease can change and evolve over time.   Welcome to the forum!  Have some patience and learn all that you can.  The good news is that you can feel better and no medications are required!  
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