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. - trents replied to catsrlife's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Patiently Waiting to See Results

    2. - trents replied to Leeloff's topic in Gluten-Free Foods, Products, Shopping & Medications
      75

      How Come Gluten Didnt Bother Me In Italy

    3. - Gigi2025 replied to Leeloff's topic in Gluten-Free Foods, Products, Shopping & Medications
      75

      How Come Gluten Didnt Bother Me In Italy

    4. - Rejoicephd replied to JulieRe's topic in Related Issues & Disorders
      7

      Oral thrush question

    5. - catsrlife posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Patiently Waiting to See Results


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,897
    • Most Online (within 30 mins)
      7,748

    Sgp
    Newest Member
    Sgp
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)


  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
    • trents
      You state in an earlier post that you don't have celiac disease. Here in this post you state you will "be doing another test". What will this test be looking for? What kind of celiac disease testing have you had done? If you have used a Entero Labs it sounds like you have had stool testing done for celiac disease which is not widely accepted as a valid celiac disease diagnostic testing method. Have you had blood antibody testing for celiac disease done and do you realize that for antibody testing to be valid you must have been eating generous amounts of gluten for a period of weeks/months? 
    • Gigi2025
      No, I've not been diagnosed as celiac.  Despite Entero Labs being relocated to Switzerland/Greece, I'll be doing another test. After eating wheat products in Greece for 4 weeks, there wasn't any reaction.  However, avoiding it here in the states.   Thanks everyone for your responses.  
    • Rejoicephd
      Thank you @JulieRe so much for sharing this extra information. I'm so glad to hear you're feeling better and I hope it keeps moving in that direction. I feel I'm having so many lightbulb moments on this forum just interacting with others who have this condition. I also was diagnosed with gastric reflux maybe about 10 years ago. I was prescribed ranitidine for it several years back, which was working to reduce my gastric reflux symptoms but then the FDA took ranitidine off the shelves so I stopped taking it. I had a lot of ups and downs healthwise in and around that time (I suddenly gained 20 pounds, blood pressure went up, depression got worse, and I was diagnosed with OSA). At the time I attributed my change in symptoms to me taking on a new stressful job and didn't think much else about it. They did give me a replacement gastric reflux drug since ranitidine was off the shelves, but when I went on the CPAP for my OSA, the CPAP seemed to correct the gastric reflux problem so I haven't been on any gastric reflux drug treatment for years although I still do have to use a CPAP for my OSA. Anyway that's a long story but just to say… I always feel like I've had a sensitive stomach and had migraines my whole life (which I'm now attributing to having celiac and not knowing it) but I feel my health took a turn for much worse around 2019-2020 (and this decline started before I caught covid for the first time). So I am now wondering based on what you said, if that ranitidine i took could have contributed to the yeast overgrowth, and that the problem has just been worsening ever since. I have distinctly felt that I am dealing with something more than just stress and battling a more fundamental disease process here. I've basically been in and out of different doctor specialties for the past 5 years trying to figure out what's wrong with me. Finally being diagnosed with celiac one year ago, I thought I finally had THE answer but now as I'm still sick, I think it's one of a few answers and that maybe yeast overgrowth is another answer. For me as well, my vitamin deficiencies have persisted even after I went gluten-free (and my TTG antibody levels came down to measurably below the detectable limit on my last blood test). So this issue of not absorbing vitamins well is also something our cases have in common. I'm now working with a nutritionist and taking lots of vitamins and supplements to try and remedy that issue. I hope that you continue to see improvements in working with your naturopath on this. Keep us posted!
    • catsrlife
      Back at the end of July I got this rash on both of my forearms. It started on my right and continued to the left. It was on the top and side. The rash has bumps that would pop with clear liquid if scratched. They would almost crystalize and scab up. They reminded me of chicken pox. They would scab for weeks and not heal much at all except for the blood clotting. If the scab was scratched off, it would bleed and bleed until it scabbed up again. The skin has lost its pigment where the scabs are. I figured it was probably either the plant I had trimmed around the 15th or some reaction to the magnesium complex I was taking or an allergic reaction to the asthma meds I was on. I stopped the asthma meds and the magnesium. The rash seemed to get better but when I took the asthma meds it flared up again so I went to the urgent care as my doctor was unavailable. The UC doctor said it probably wasn't the meds and asked about my diet. I said I was strict keto. I usually am, but there is a story around this. I feel amazing on keto. When I eat sugar, wheat, and starchy veggies I feel horrible. Blood sugar goes up, IBS type symptoms, brain fog, etc. But I have a horrible addiction to carbs so I blow it sometimes and after Mom died in 2023, I fell off the wagon. No rashes, just weight gain. I finally went back on keto and then around that time had a piece of pizza (or so, it's hard to stop the carb rush.) So I was strict keto, off and on. She ignored that and prescribed some allergy meds. It didn't go away.  What was happening by then was that the rash was now on my upper elbows, both of them, on the back of my arms. It starts with a very itchy bump, spreads around it and sometimes just burns like crazy and other times just itches. Then it started on the sides of my knees on the oustide, a little bit down the sides of the calves. It's not as bad there as it is on my arms even though it comes and goes (and so does wheat in my diet.) I then got three tiny blisters on each hand, 3 on the insdie of my index finger on the right hand and 3 on the inside of middle finger of my left hand. There is still a little scab there even though it was two weeks ago. No more have appeared on the fingers. But right now the back of the arms above my elbows are starting to itch. At some point I started to think mites from the possum that was sneaking into our house but it's been 3 months and they would be dead already. It wouldn't be from humans because I don't go near any humans although I did take an Uber to the doctor and the bus back. Plus, it's symmetrical. It starts on one side and is almost identical on the other.  I did my DNA with Ancestry and MyHeritage. I don't have the HLA-DQ2 or HLA-DQ8. I do have HLA-DQ2.2. I took the blood test but it was negative. Then again, I don't eat wheat every day. I rarely eat it except for lately when I've been preparing for the blood test if I have to take it again. I don't like to. It makes my joints hurt, gives me brain fog, stomach problems, I sleep in the middle of the day, etc. I have a doctor appointment tomorrow. I hope that she will be more serious about this than the UC doctor was.  So I have no idea. With my luck they'll magically disappear before the doctor appointment. That's what happens with everything.
×
×
  • 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.