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

Anyone Else Have Bleeding Problems?


Philippa

Recommended Posts

Philippa Rookie

Does anyone else have extremely heavy periods that are a result of celiac disease? I have read that vitamin K deficiency can cause bleeding problems. I've been having ridiculously heavy bleeding with my periods since January, to the point where for a few days after my period I am extremely dizzy, tired, and have fainted a few times. Basically I am soaking through full size pads every 30-60 minutes, for 6 hours or more. I was diagnozed with celiac in March and have been eating gluten-free since then. It seems like the bleeding has inmproved slightly but not that much.

My family doctor thought it was a gynecological problem, and told me to see my gyn. I have endometriosis as well. My gyn is doing some tests (including a sonohysterogram, which I'm having today) but she doesn't know much about celiac. When I told her I was diagnosed with celiac disease recently she said, "that's weird, you can't get that as an adult, you must have had it since childhood."

If the results of the tests she's doing find something, then that's ok. I am just worried that this is some weird side effect of celiac disease (like the vitamin K thing, or some other thing I don't know about) and that she won't even consider that.

I just feel like I can't keep going like this. I had anemia even before this heavy bleeding started in January and I have no idea what my hemoglobin is like now...I'm sure it's even worse, judging by how I feel. I am short of breath, tired, and dizzy all the time, especially for a week or 2 after my period. I'm sick of feeling this way...

Has anyone been in a similar situation?

Philippa


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



Celiac.com Sponsor (A8-M):



Fey Rookie

I've had heavy bleeding problems since my first period when I was 10. Unlike you, I was never diagnosed with endometriosis, and every single sonogram/pap came back normal (until I went in for an emergency appendectomy and they found a ruptured ovarian cyst that all the ultrasounds missed for who knows how long).

I'll literally go through a super sized tampon AND an overnight pad in a matter of an hour to a couple or hours at its worst. When I was younger, my parents gave up and just bought me adult diapers during my periods.

My mother had similar issues on and off throughout her life, though hers got better after she went on birth control, and then even better after she had kids.

txplowgirl Enthusiast

Same here, Since I was 10. I also have endo. The first 2 days after I start are the worse for me. Dizzy, headaches and very weak. I have to use 2 super absorbent overnites at a time every 2 hours or less. Before I went gluten free. I would stay home from school and sleep for a good three days straight, only got up to use the bathroom, and I hardly had any appetite whatsoever. I felt like I was dying.

Now after gluten free. The first 2 days are bad but now I don't sleep like the dead and I eat. The pain and cramps are not near as bad as they were also.

Hang in there.

tarnalberry Community Regular

Definitely keep following up until they get to the root of this. That level of bleeding is considered abnormal even immediately after giving birth!

Coolclimates Collaborator

Oh, sorry to hear that. My periods are heavy, but not nearly as heavy as yours. However, I get really bad cramps. I've had 2 laporoscophies (sp?) to check for endo, none found either time.

Mari Contributor

Hello Philippa - I had endrmetriosis when I was young and sometimes very heavy periods. In my 40's I had my second d&c and shortly after that I did a herbal program to kill parasites. My next pap was negative and no more problems. It also got rid of the white plaque in my mouth. However I have read that endometriosis clears up at menopause and I started that around 50 so that may have been part of the disappearance.

If you are low on Vit K you would probably have some bruising showing up, especially on your arms/legs and not remember having any injury.

For a few years before I was diag. with celiac disease I had bruising and was passing blood in my stools (it looks like coffee grounds). This cleared up after I went gluten-free and did some herbal programs to improve my digestive health.

AnnGriffin Newbie

I was at the end of my 12 month period free to be considered post menopausal, and then I had a several weeks of heavy bleeding resulting in three trips to the ER to get it under control, (before being diagnosed with celiac disease).

What they think is that my thyroid was low (again) so they upped my thyroid meds, a lot. but then we tried a low carb diet and so in a couple of weeks started to absorb the meds which were now too much and my thyroid went sky high, which they said can cause bleeding even in post menopausal women.. and my vitamin K was still low also among others vitamins.

So.... they lowered the thyroid again, but by then we had gone off the low carb diet and so (see a pattern here?) and got sicker again, stopped absorbing the meds

had 3 more ER trips for hydration (we all know why) and pain they thought was gall bladder.. the new blood test showed my thyroid level drop to the bottom of the chart again...

FINALLY my general Dr. put it all together, rather then working on each problem like we had been for years..


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



Celiac.com Sponsor (A8-M):



dilettantesteph Collaborator

I think that it could be a symptom of celiac disease. My periods got heavier as my symptoms became worse in the years leading up to diagnosis. I could go through a super tampon in 15 minutes. After 3 years gluten free, I don't need those super tampons anymore. Then again, I'm 50 and probably on my way out as far as periods go.

  • 1 year later...
Coolclimates Collaborator

these last few months have been strange for me. My periods are almost always very regular but a couple of months ago, I got one and kept bleeding for well over 2 weeks. I wasn't bleeding very hard but it went on and on. My gyn seemed to think that it was due to not ovulating. Then my last period came early but other than that, there was no problem. This period came very late and I had a good 2 weeks of PMS and cramps before it even started. Well it finally started last week but it's been 7 days and I'm still going very heavy. Usually my periods are over in 5-6 days. The cramps have died down but I'm concerned about the heavy bleeding. I've been under a lot of stress lately, but not more than I am usually under. I've been on the gluten-free diet for over a year now. I have diagnosed Celiac Disease and it's been really slow to improve.

cougie23 Explorer

Glad you brought this up...I was hoping someone would! I bleed so heavey now that I litteraly "HEMORAGE" for one to two days!!!go through 1 super ob tampon every 15 min. to an hour....and sometimes its so bad and gloppy it looks like a miscarrage!!!

(I can't gat pregnent...had my tubes tyed)...other crazy stuff too...like in March I went 2 months without my period..and was suffering from severe hot flashes...and severe itchy skin all over my body...it was driving me insane(we were on vacation)...right before i discovered that I was celiac...and boy was I glutened to the sateration point!!! put me in the hospital twice!!!! all for differant symptoms!!!! :blink:

Nice to hear its not just me!!! :D

cougie23 Explorer

I'm 47!!!! :blink:

pricklypear1971 Community Regular

I know I posted this on another similar thread...but here it is again.

Get a Dr. John Lee book. Get some progesterone cream. Try it.

Works for me. Mine went zonko around dx time. 4 months of cream around days 14-28 fixed it right up. Helps with pms too!

mommida Enthusiast

My sister-in-law is a spokesperson for a newer drug for heavy menstrual bleeding. Can be viewed on-line at drug's website.

I am in now way linked to the drug other than that, but I don't think the rules of the board would want me promoting the medication.

lucia Enthusiast

I had this issue. And, like someone said above, my periods got worse as my symptoms from gluten-intolerance worsened. For me, along with heavy periods, went distressingly painful cramps. Scary.

Acupuncture changed this. Yes, I've been gluten-free for awhile, but I still think it was acupuncture that helped. My periods were back to normal until recently (I did an ivf cycle which effected them negatively). Chinese medicine is really good at woman's hormonal issues, much better (I think) than Western medicine.

  • 5 years later...
Izz Newbie

I have found my periods have changed since going gluten-free. Always been clockwork, heavy, dark, painful and long. BCP have never controlled them. Since going gluten-free they became bright red and fluid, heavy to the point of questioning hemorrhage. I've also had to go dairy free due to allergy which threw timing out for around 6 months, back on clockwork now - much less gut cramping since dairy free but still heavy and long. Recently I started vitamin K 1 & 2 supplements  (along with existing high quality gluten-free multi & iron occasionally). Since the vitamin K my period length has HALVED from 10-12 days to 5. Instead of 3 days of heavy (read sometimes can't leave the house) I've had 12 hours of heavy and 4 days of light. My gums have stopped bleeding when I brush my teeth. The abdominal pain at period time is pretty much gone, just regular uterus cramping now. I'm crossing my fingers this keeps getting better and maybe my post helps someone else.

  • 2 months later...
Izz Newbie
On 20/10/2016 at 9:34 AM, Izz said:

I have found my periods have changed since going gluten-free. Always been clockwork, heavy, dark, painful and long. BCP have never controlled them. Since going gluten-free they became bright red and fluid, heavy to the point of questioning hemorrhage. I've also had to go dairy free due to allergy which threw timing out for around 6 months, back on clockwork now - much less gut cramping since dairy free but still heavy and long. Recently I started vitamin K 1 & 2 supplements  (along with existing high quality gluten-free multi & iron occasionally). Since the vitamin K my period length has HALVED from 10-12 days to 5. Instead of 3 days of heavy (read sometimes can't leave the house) I've had 12 hours of heavy and 4 days of light. My gums have stopped bleeding when I brush my teeth. The abdominal pain at period time is pretty much gone, just regular uterus cramping now. I'm crossing my fingers this keeps getting better and maybe my post helps someone else.

I just wanted to add how important it has been to keep on top of calcium levels as well. Healthy bleeding/clotting cannot happen without calcium, and gluten is like the anti-calcium.

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.