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Readers Respond: Did You Have Pelvic Pain or Endometriosis Before Your Celiac Diagnosis?

Responses: 20

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Updated January 19, 2011

Many women with celiac disease report that they also have suffered from chronic pelvic pain, extremely painful periods and endometriosis. Although research is scanty, there appears to be a connection between these gynecological problems and celiac — and in many cases, the gluten-free diet helps to improve or even eliminate symptoms.

Did adopting the gluten-free diet help you with pelvic pain, extremely painful periods or endometriosis? Tell your story below.

Tell Your Story

Gluten Free, Cramp Free

I've always had terrible menstrual cramps. The debilitating, head-spinning, every muscle in my body tensed kind. A few years ago I was diagnosed with an allergy to wheat, though it was actually not the gluten I was allergic to, but a different protein. Instead of causing stomach problems my whole life, the allergy had manifest itself in eczema and other sensitive skin problems. Regardless, a wheat-free diet is the only cure, so I went gluten free. Two months into my gluten-free diet, my menstrual cramps didn't just lighten, they went away completely (as did my skin issues). I will never go back to eating wheat, simply because of how amazing it feels to have those three days of my life back every month.
—Guest Casey

Pain

I've had unbelievably terrible periods since I was young. It runs in our family. I've lost jobs because of nausea and pain during these times. Also stomach problems existed for me since childhood. I had anxiety disorder over the fear of throwing up and prayed I'd not ever get my period. I did not actually get it until 14. In my family hormonal issues were prevalent and starchy foods our main stay. My grandmother died of Colon cancer. My mother and I both experienced what I can only call early menopause symptoms in our early thirties. I've only begun a gluten free diet and I'm still working on it. Because if having stomach problems all of my life my usual way of dealing with things is changing and I've still got a lot to learn. Thank you. Ida.
—Guest Ida

Yes, pelvic pain

I started my period when I was 12 years old and had pelvic pain that put me on my knees or in bed in a fetal position and sometimes migraine headaches to accompany the pain. When i had early menopause, I was delighted. The pain of menstruation would be over with. It was. But, I had other symptoms of celiac disease, but didn't learn what to do about it until about 8 years ago. Since going gluten-free, most of my physical pains and ailments have disappeared. I have absolutely no doubt that the cause is gluten. This celiac diagnosis was confirmed by the doctor recently. But, I was the first to think it was gluten intolerance by research I did myself. When I told my doctor of my successes when going gluten-free, he confirmed I had celiac.
—Guest S Barringer

Amazing!

I had terrible pains for the past 10 years and it got worse every month. It was so bad that my knees gave in and I fell on the floor unable to move due to the cramps. This lasted at least one day and i was screaming and crying. 5 month ago I found a post online suggesting a gluten free diet against menstruation cramps and already after 1 month I managed with just one pain killer, 2 month no medication needed and now my fear of the day is slowly going away since my last 2 periods were almost completely pain free and I did not take any pain killers and was able to go out with friends on day 1 - this was impossible for the last 10 years. It is a miracle!
—Guest Jo-Anna

Absolutely

I struggled with horrible periods since I was 14. I would vomit from the pain on a monthly basis only to have my Drs say it was all in my head and I just needed to have a baby. Fast forward to 27 when my husband and I started seeing doctors for infertility problems. I was finally diagnosed with endometriosis at this time. Now I'm 35 and was diagnosed with Celiac disease 2 months ago. Since I have been gluten free, my period pains have all but diminished. I truly believe there is some kind of link between these 2 diseases.
—Guest Jess

Must be linked

After years of severe pain and heavy bleeding, anaemia and depression a friend told me about the possible link between gluten intolerance and infertility. After 5 years trying for a baby trying every recommendation out there. 3 operations on endo and fibroids, i decided to try a gluten free diet. I didn't expect any changes to my pain and bleeding but hoped to get a positive pregnancy result. The first month my period was so light and pain free I thought I must be pregnant. I'm now on my second month and again lighter periods hardly no pain and I'm amazed and elated. December I am scheduled for an endometrial ablation in order to solve the severe problems I have had for over 10 years but I think I have found the cure myself. If next month is the same then I will cancel my op and open the doors once more, on the miracle off chance that at 42 I may still be able to get pregnant. This has given me hope and my life back. I'm on day 2 of my period and I'm off shopping with the girls!!!!
—Guest traceytt

Pelvic pain before celiac diagnosis

I had years of extremely painful periods and eventually had a hysterectomy at age 35 with pre-cancerous cells found during the pathology of my uterus. I also experienced severe pain during sex the entire 36 years I was married, I don't know if that's related to celiac, it would be interesting to know. I wasn't diagnosed with celiac until I was 52 but had always had a lot of health problems. My mom said I had severe colic as a baby and was sickly as a child and always the smallest child in the class, so I've probably had celiac my whole life. Going back to the painful periods, sometimes mine were so bad I'd pass out and bleed excessively for 2 weeks. The doctors never knew what to tell me until I experienced ovarian cysts, that's what eventually led to my surgery. I hope this information helps someone, my husband thought I was crazy or a hypochondriac. I thought I was crazy too at times when the doctors couldn't find anything wrong, it was an awful time and I'm glad it's over.
—Guest Susan Vail

THIS

Yes. I got diagnosed and had surgery for endo way before getting diagnosed with coeliac. I was in so much pain I would go into shock (grey, shaking, vomiting and diarrhoea - all while not being able to move an inch). I think I had a few close calls to be honest. The surgery didn't help. All I noticed was some of the ripping sensations when I moved sometimes disappeared (I don't want to know what that was). Only prescription 75mg NSAIDS could take the edge off. I could take 10-12 over the counter painkillers in day with no effect. I went on the pill and that helped, but got taken off it due to blood clot risk issue and the mini pill didn't help so much. I was diagnosed with coeliac approx 18 months ago and been on GF diet since. Virtually no pain! As the indicators of coeliac can be picked up from a blood test - I would defintely recommend asking a doctor to run the test. A biopsy needs to be done to confirm, but this is still less invasive than keyhole surgery needed for endo.
—Guest kat123

I have Both....

i was about 15 when i was told u have Endometriosis & had very hard time getting pregnant for years i had pains & went threw tons & tons of laperscopes went i turned 30 i was told i would have 1 1/2 years til my next laperscope or a removal of my uterus then i had my galbladder removed & i then in return was not getting any better but all my test were fine it wasnt until i came acrossed a doctor cause my doctor was running out of ideas told me i had gluten sensitivity which turn out as i was slowly getting rid of the gluten my signs to then leftover gluten in stuff i had no idea it was in still affected me so today as of 5mos ago i now have Celiacs Disease & have had no extreme periods not gonna lie i still have pain but i havent had pain during sex, or the extreme thing i have had before with my Endometriosis i will be 32 this month and 2 years since my doctor told me every 1 1/2 years that i would need a laperscope for my Endometriosis now i believe Celiac Disease is what caused it all
—Guest Dusti Vaughan

Period pain

I suffered from excruciating period pain (nausea, vomiting) and regular migraines for 25 years (and virtually no bowel symptoms) before eventually getting a coeliac disease diagnosis. Once on gluten free diet both problems vanished along with my night blindness.
—Guest Hev

Amazing

I started a gluten free diet around two and a half months ago, to see if it would clear up an itchy rash on my scalp. Last month, I was completely floored to realize I was in the second day of my period, and had no cramps at all. I actually started to cry, I was so relieved! And the same thing this month- I'm like a different woman. Since I started menstruating the first two days of my period, especially the second, have been excruciating. Cramps, back pain, leg pain, vomiting, gas, constipation, migraines- you name it! If it's remotely connected to period pain, I used to get it. And now, nothing. A few twinges the first day, easily removed with a single naproxen. I used to bleed very very heavily too, for a solid six days, and now i bleed normally for four days. It's like a miracle cure.
—Guest Grateful!

more about my struggle with monthly pain

I might add that I was given 2 D&C's which really didn't help with the pre-menstrual pain. After taken off the Birth Control pill that I was highly allergic to, I had 2 Gynecologists tell me to adopt as I couldn't have children. You have a section on Breast Cancer where I wrote more about all of the cysts and scares I had, including a partial mastectomy. If it doesn't get published, I'll write it again, if you wish. Let's hope the final quarter of my life without gluten can be a healthy trip. I also suffer from depression, no wonder!
—Guest CarolMielke

unbelievableHell

I suffered a heel each month with severe pain and always had to leave my place of work. I was told I was a guaranteed absence, so I was put on the birth control pill and it helped so much that I got 2 promotions. I then couldn't wait to have a baby to compare the pain. It is true, it was contractions, same as labour pain, I passed out and vomited. I then had a hysterectomy at the age of 35 after having three wonderful children. I am now 70 and have been diagnosed with celiac disease. It is true, it affects the whole body. I have as unbelievable immune system that I have been trying to get well for years. I got awful chest infections from the bad air where I used to live in Oakville. I love the air in Burlington, which is better but most of all , I love the air up North and I'm trying to buy a small cottage. I do however wish our government would make the blood test manditory. They check every child in Italy prior to going to school. I have now read about 14 books on this awful gluten
—Guest CarolMielke

Endometriosis and Celiac

I had severe endometriosis before my celiac diagnosis.
—Guest Kathy

My god!

Had endo from about 18ys old. Was told I was stressed. Eventually diagnosed when I drove myself to a&e at 28yrs old. Had 2 operations to remove but came back. 3rd time lucky doctor wanted to give me injections to give me early menopause. He said it would sort the pain below but told me the pain I had under my ribs was something else. I refused the injections and went home totally rejected. He said endo wouldn't cause my stomach to go that big . On a whim I tried a wheat free diet. 3 or 4 days later I felt like a new women. Still the endo pains but at least I could lean forward with out all the pain. My waist went down by about 6 inch. I am only a size 10 but people have asked if I'm pregnant! The endo pain is still there but I haven't bled in ages. The only problem going wheat free is getting enough fibre. Getting constipated aggravates my endo. I believe there is a connection x
—Guest Jo

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Did You Have Pelvic Pain or Endometriosis Before Your Celiac Diagnosis?

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  6. Pelvic Pain, Endometriosis, Menstrual Disorders and Celiac Disease - Stories of Pelvic Pain, Endometriosis and Menstrual Disorders in Celiac Disease

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