Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Celiac, Irregular Menstrual Cycle, Birth Control Polls


leslie j

Recommended Posts

leslie j Newbie

My daughter just turned 15 and she was diagnosed with Celiac when she 14. She has very irregular periods and we have tried several different birth control pills in an attempt to put her on a regular cycle. But the pills don't help. It sometimes takes double dosage to stop her bleeding but that only lasts for a few days. I'm wondering whether Celiac is the cause of her irregular cycles. We have gone to several doctors with no remedy. Has anyone had any similar experiences?

Leslie J


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



eKatherine Apprentice

How's her weight? Malnourishment can wreak havoc with a woman's menstrual cycles.

dionnek Enthusiast

Well, I wasn't diagnosed with celiac until just 2 months ago (I'm now 33), but when I look back at my childhood, I always had symptoms. I had VERY HEAVY periods (starting at age of 13) and the cramping was so bad on the first day every month that I had to stay home from school. Finally, at the age of 16 they put me on birth control to help the cramping and it worked - OrthoNovum 28 is what I was on (and stayed on for the next 15 years until I wanted to have a baby). It basically eliminated the PMS/cramping and regulated my periods so that they came exactly the same time each month and only lasted for 3-4 days (and weren't so heavy!). If you haven't tried the OrthoNovum, give those a try. Hope that helps. I feel for her!

CarlaB Enthusiast

My periods have changed dramatically going gluten-free. The downside of the Pill is that the cycles are not real. The primary mechanism of the Pill is to prevent ovulation, so her body will be going through a false cycle each month, which is why they seem to regulate the cycle when what they're really doing is eliminating it. Theoretically, you could take the Pill without going off it and not cycle at all. There are now Pills on the market that do this.

I would be sure she's adequately nourished. Vitamin deficiencies cause all kinds of problems with the cycle. Some people can be on the Pill for years and never have a problem, but others can be on it for a few months and end up having all kinds of trouble getting pregnant when they get off it. I used to teach natural family planning and a certain percentage of our clients were people trying to get pregnant post-pill. It was heart-wrenching for them.

penguin Community Regular

I've been on the pill since I was 14 (I'm now 22). I had regular cycles, but I had terrible acne, so that's why I went on them. There are a few reasons they may not be working for her. Celiac prevents you from absorbing medications correctly, and the pill info inserts actually say that effectiveness is greatly reduced when D is present. For us it probably still prevents pregnancy because we can't carry a child when we're sick anyway. <_< (personal annoyance, I've spent years and lots of money trying not to get pregant when I probably couldn't anyway)

Also, she may not have found the right pill for her yet. Carla's right, pills cause a false period caused by hormone withdrawl during the sugar pill week. You can go easily 3 months without having a period if you just take active pills straight through. This only works with monophasic pills, not ones like ortho tricyclen. Seasonale, which is the pill marketed for skipping periods, is mircette marketed differently. The patent ran out on mircette so they needed a new way to sell it. Mircette is monophasic and is a relativley low dose.

kbtoyssni Contributor

It's very common for celiacs to have an irregular cycle. I didn't get a period at all until my doctor put me on the pill when I was 19. I'm 24 now. I've only been gluten-free for 10 months and haven't been off the pill for long enough to know how my body's going to respond. I've tried probably six or seven different brands to find the one that was best for me, so keep looking.

Your daughter has been gluten-free for a year, though, so I wouldn't think celiac would affect her periods much anymore. I'd say it may have more to do with being so young.

Guest cassidy

I have always had irregular cycles. I was on the pill starting when I was 15 or so. I was able to control mine by the pill, so I guess I was lucky.

I went gluten-free in January and went off the pill then as well. I have been having 40 day cycles with 12 day periods, so it isn't much better then when I was younger. We are trying to get pregnant, so I don't know how much of a challenge it is going to be.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



leslie j Newbie

Thanks for sharing. If anyone else has thoughts on this subject. Please post.

Thank you,

Leslie j

lorka150 Collaborator

Hi Leslie,

After my first period at age 12, I went on the pill almost immediately because I had extreme cramps and could not function. About four months before I was diagnosed with celiac (about 10 years later), I went off the pill. At that time, I was a runner, and we assumed that I wasn't getting my period because of that and the pill adjustment. Once I was diagnosed, I started lsoing a huge amount of weight - therefore, they put me back on the pill. About two weeks on, I felt quite ill, so they took me off of it. I felt better, but still no period. They gave me a week long hormone treatment, and still no period.

I had an ultrasound done and they couldn't find my ovaries, so they have to do a vaginal one now to see what's going on. Worst scenerio? I'm twenty-three and heading through menopuase, putting me at risk for osteoporosis. Not a HUGE deal, but not something relatively pleasant! (Much worse, I figure).

I would talk to a gyno or GP immediately and perhaps see about the treatment.

Kaycee Collaborator

My periods have always been as regular as clockwork, never overly heavy, to start with they lasted about 5 to six days, and now I only have them for two to three, in a 28 day cycle, and it suits me fine, otherwise, my iron levels could've been a lot worse. I have noticed that is only over the last fifteen or so years they have got lighter. So I presume that has had nothing to do with being gluten free.

I have always been overweight, not excessively, so I guess that could explain the normal periods. I did have problems conceiving my first child at 24, but as the doctor said, once I had the hang of it, I knew how to do it and had three more with no problems.

I am in my late 40's now, and have only just been diagnosed with coeliac six months ago. It has not made any difference to my periods that I have noticed, and they should now winding down as I approach menopause. I am waiting to see what type of symptoms I have there, now that my diet is totally deficient of flour and sugar.

It would be interesting to know whether the women with irregular periods etc have low body weights, and whether woman like me who are of normal weight and over do not have the same problems. I know everybody is different and there probably is no sense or reason to this.

Cathy

AndreaB Contributor

My periods were fairly regular with heavy bleeding the first few days. I hated it. I went on the pill when I was 20 and they evened out for reasons listed above. After I went off the pill 10 years later they stayed even but got heavier over the years. Three kids later (still waiting for my first cycle after this last one), they had started getting irregular and heavy again. Does your daughter eat soy. That could also cause problems with her cycle with all the extra "estrogen". I think that is why my cycle started getting so irregular. I had started to think I was starting menopause (at 38), then found out I was expecting. My cycle had been varying from 4 to 5 weeks. Had we not been expecting it would have been a 7 week cycle. I had no symptoms of menopause so I can only go back to the soy and what I have since learned about that.

farofa Rookie

Has your daughter been tested for PCOS (Polycystic Ovarian Syndrome)? Its very common and not too difficult to treat. Irregular periods at such an early age are a sign of something significant and its worth doing a medical workup to rule this out.

As someone who has suffered tremendously for the past 25 years from terrible periods, which only got worse with age, I suggest that you find out now. My life would have been very different had we discovered the problems earlier.

You may also want to look at the Cycle Diet, a diet for women with PMS developed by a registered dietitian. I've been a client of hers for almost a year and she's been a terrific advocate, a great diagnostitian and generally a pleasure to have in my life. Her name is Debra and the site is: Open Original Shared Link

Alex

leslie j Newbie
My periods were fairly regular with heavy bleeding the first few days. I hated it. I went on the pill when I was 20 and they evened out for reasons listed above. After I went off the pill 10 years later they stayed even but got heavier over the years. Three kids later (still waiting for my first cycle after this last one), they had started getting irregular and heavy again. Does your daughter eat soy. That could also cause problems with her cycle with all the extra "estrogen". I think that is why my cycle started getting so irregular. I had started to think I was starting menopause (at 38), then found out I was expecting. My cycle had been varying from 4 to 5 weeks. Had we not been expecting it would have been a 7 week cycle. I had no symptoms of menopause so I can only go back to the soy and what I have since learned about that.

HI Andrea,

My daughter is having an ultrasound next week. Is PCOS something that they might be able to find with that?

Thank you.

Leslie

Guest southgoingzax

Leslie,

It sounds as though your daughter may have ovarian cysts. They can cause heavy and irregular bleeding. It is treatable, although sometimes the cysts do come back. An ultrasound should definitely pick up on something like that.

As far as other birth control pills to recommend, I would suggest NuvaRing. It is a small plastic ring you insert and it stays in place all month. It is monophasic, so if you don't want to have a period, you can just take one out and put another back in - I use it and have only 2 or 3 periods a year when it's convenient. Also, because it is a constant release of medication, there is no spike in hormonal levels as when you first take a pill, and the dose is lower than regular pills, too. A lot of women who are sensitive to regular pills can use this without the sever mood swings etc. Also, it's absorbed through the vaginal membranes, so it doesn't need to travel through a wreaked digestive system. I've been on and off pills for 15 years and I think the ring is the best by far. Also, I don't know a single woman who couldn't get pregnant after going off the pill - not saying it doesn't happen, but I would think the incidences are pretty low.

Good Luck and my best wishes for you and your daughter,

zax

leslie j Newbie
My periods have always been as regular as clockwork, never overly heavy, to start with they lasted about 5 to six days, and now I only have them for two to three, in a 28 day cycle, and it suits me fine, otherwise, my iron levels could've been a lot worse. I have noticed that is only over the last fifteen or so years they have got lighter. So I presume that has had nothing to do with being gluten free.

I have always been overweight, not excessively, so I guess that could explain the normal periods. I did have problems conceiving my first child at 24, but as the doctor said, once I had the hang of it, I knew how to do it and had three more with no problems.

I am in my late 40's now, and have only just been diagnosed with coeliac six months ago. It has not made any difference to my periods that I have noticed, and they should now winding down as I approach menopause. I am waiting to see what type of symptoms I have there, now that my diet is totally deficient of flour and sugar.

It would be interesting to know whether the women with irregular periods etc have low body weights, and whether woman like me who are of normal weight and over do not have the same problems. I know everybody is different and there probably is no sense or reason to this.

Cathy

My daughter, who was diagnosed in January is not thin like one might expect with Celiac. She is a year round swimmer and is 5'6 and 135lbs. We discovered the celiac when testing her hormones for irregular periods.I threw that test in because it runs in my husbands family. Now three different birth control pills later she is in worse shape with the periods then ever before. I am hoping to get her back up to UCSF next week for a full work up. It is very frustrating to be bleeding more days of the month then not, and have no idea when the next period will begin.

Leslie

Leslie,

It sounds as though your daughter may have ovarian cysts. They can cause heavy and irregular bleeding. It is treatable, although sometimes the cysts do come back. An ultrasound should definitely pick up on something like that.

As far as other birth control pills to recommend, I would suggest NuvaRing. It is a small plastic ring you insert and it stays in place all month. It is monophasic, so if you don't want to have a period, you can just take one out and put another back in - I use it and have only 2 or 3 periods a year when it's convenient. Also, because it is a constant release of medication, there is no spike in hormonal levels as when you first take a pill, and the dose is lower than regular pills, too. A lot of women who are sensitive to regular pills can use this without the sever mood swings etc. Also, it's absorbed through the vaginal membranes, so it doesn't need to travel through a wreaked digestive system. I've been on and off pills for 15 years and I think the ring is the best by far. Also, I don't know a single woman who couldn't get pregnant after going off the pill - not saying it doesn't happen, but I would think the incidences are pretty low.

Good Luck and my best wishes for you and your daughter,

zax

I was told about the nuvaring, which might be a good option for her. If she can not absorb the pill, it could be perfect . Ofcourse trying to convince my fifteeen year old on it is another issue. I will see how her ultrsound goes next week, get her latest rounds of blood work back and hopefully get into UC next week for a full workup. Thanks for the suggestion.

Leslie

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

    2. - captaincrab55 replied to lmemsm's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Finding gluten free ingredients

    3. - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

    4. - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

    5. - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,132
    • Most Online (within 30 mins)
      7,748

    Exhausted-momma
    Newest Member
    Exhausted-momma
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.