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

No Period


Ems1984

Recommended Posts

Ems1984 Rookie

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 :)


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



Celiac.com Sponsor (A8-M):



kellylynn Rookie

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.

jerseyangel Proficient

There is a connection--I've run across it several times while researching.

Here's a site that mentions it--

Open Original Shared Link

And another--

Open Original Shared Link

  • 3 months later...
mhb Apprentice

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.

RideAllWays Enthusiast

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.

babysteps Contributor

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!

Korwyn Explorer
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. :(


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



Celiac.com Sponsor (A8-M):



  • 1 year later...
gfquestion Newbie

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.

ravenwoodglass Mentor

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.

sb2178 Enthusiast

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).

Chakra2 Contributor

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 !

CaraLouise Explorer

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.

Coolclimates Collaborator

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?

  • 2 years later...
joeywants Newbie

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.  

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,549
    • Most Online (within 30 mins)
      7,748

    Blough
    Newest Member
    Blough
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.