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

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.

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

Definitely a Connection

I was diagnosed with Celiac at 16, I started my period around 12 and they have always been really bad, like curled up in a ball crying on the bathroom floor. Birth control and going gluten-free really helped for the first 3 years. Slowly the pain came back and the symptoms started. Now at 19, the pain is back and I have the majority of the symptoms of endometriosis. My doctor thinks that is what I have and is having me come in to confirm the diagnosis.

—Guest alauren0604

years

Years of painful periods that made me vomit for a week at a time. The doctors gave me antacids and tried to get me to spend $5,000 to put a scope down my throat. I could not travel with family because I have to smoke to eat. Then one day my boyfriend bought me a g-free book, and I have not had a event since. Today I started my period, didn't even feel it coming on, and the best part is I'm not lying in bed shaking and sweating from the pain wondering if I should go to the ER or not and treated like a drug addict.

—Guest tike

grandmother

I had endometriosis, and had a total hysterectomy at age 28. My pelvic region was destroyed by the disease. I continued to have pain afterwards, and the Drs. said it all could not be removed so I could not take estrogen or any other hormonal treatment as the pain would be worse. lost my gall bladder six years ago, and was diagnosed with celiac but did not know what it was and ignored it. six months figured it out and have been gluten free. I noticed now I do not have the pain anymore.

—Guest anynomos

More than a coincidence

I have endo and after my second surgery a naturopath told me to avoid wheat and dairy. I dabbled with eliminating them but really noticed a change when I cut out wheat. I've recently been diagnosed as celiac. So I'm now gluten free and finally pregnant!

—Guest Teak

YES

I struggled with horrible pain for years before realizing the endometriosis-wheat connection. I had multiple surgeries to remove endometriosis but after the endo was removed, the pain would just come right back. Doctors were completely ignorant of the wheat-endo pain link and misdiagnosed me with other conditions on top of the endo to try to explain the continuing pain, and prescribed numerous painkillers (which did nothing to help). I stopped eating wheat and dairy as well (the wheat is the major culprit however). Since eliminating these foods I have been fine and pain free.

—Guest cora23