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SillyYakMom

Do Many Celiacs Also Have Endometreosis?

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Just wanted to know. I have been a mess for the past 9 months with pain. I had an ultrasound and have a follow up appointment soon. I have felt pain on my bladder even. For two weeks out of every month I am in agony. I have wanted to go see through laproscopy if I have it. My mom is very fertile, but my sister and I suffer from cysts and pain and have a harder time conceiving.

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I seem to have this same problem. Every month at ovulation I feel like I have a bladder infection, but I don't. I also get stabbing pains in my gut and become very constipated. I mean, I still go once or twice a day but it's hard as rocks. Taking psylliam doesn't seem to help but magnesium does.

This is becoming more and more regular, especially the stabbing pains. They don't last long, but are intense, like your whole face scrunches up and you really want to curl in a ball or something.

I have read that endometriosis is more common in women with autoimmune disorders so that would indicate to me that since we have gluten problems, we likely have a higher change of endo. For many it seems going gluten free helps this, however I still seem to be progressing worse and worse.

There is also a high correlation between fibromyalgia and endo.

I would like to get more answers but I guess I have to get a laparoscopy to do that. I recently had a colonoscopy and endoscopy and they didn't see anything there, so if the endo is on my bowels, it's not going beyond that. Also had a pelvic ultrasound (also transvaginal) and they didn't see anything there, but they also said they don't often see stuff that way anyway, it's just a good way to rule bad case scenarios out.

Stephanie

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I seem to have this same problem. Every month at ovulation I feel like I have a bladder infection, but I don't. I also get stabbing pains in my gut and become very constipated. I mean, I still go once or twice a day but it's hard as rocks. Taking psylliam doesn't seem to help but magnesium does.

This is becoming more and more regular, especially the stabbing pains. They don't last long, but are intense, like your whole face scrunches up and you really want to curl in a ball or something.

I have read that endometriosis is more common in women with autoimmune disorders so that would indicate to me that since we have gluten problems, we likely have a higher change of endo. For many it seems going gluten free helps this, however I still seem to be progressing worse and worse.

There is also a high correlation between fibromyalgia and endo.

I would like to get more answers but I guess I have to get a laparoscopy to do that. I recently had a colonoscopy and endoscopy and they didn't see anything there, so if the endo is on my bowels, it's not going beyond that. Also had a pelvic ultrasound (also transvaginal) and they didn't see anything there, but they also said they don't often see stuff that way anyway, it's just a good way to rule bad case scenarios out.

Stephanie

<{POST_SNAPBACK}>

REALLY?? I have been a celiac for awhile, but even when I am gluten-free I still have the pain. Not to mention my mom has fibromyalgia. My sister seems to be getting fibro. symptoms and has tons of cysts, but has not had a laproscopy. I go in on the 9th of Dec. Maybe I should have them schedule a laproscopy when I go in.

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Guest nini

I had the Laparascopy for endo about 10 years ago... the Dr. had previously said it was so bad, I most likely would not be able to have children. After 2 miscarriages I did finally have my daughter, but I had an extremely complicated and life threatening pregnancy (this was pre celiac dx). I also have fibromyalgia. The pain from that is not as bad as it was prior to going gluten-free, but it's still there and I still have really bad days. I def. think there is a correlation between these conditions and celiac. When they did the Laparoscopy they also found polycystic ovaries and lots of scar tissue (who knows what from...)

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I was tortured for years and infertile because of severe endo. I have been through the gamet of testing and treatments ranging from ultrasounds, Lupron, Laser laporoscopies etc. I had suferred with this for over 20 years until in 1999 I saw an MD who specialized in alternative medicine. He used Indoplex otherwise known as Indole 3 Carbinol in a capsule form. It is dervived from cruciferous vegtables such as broccoli and cauliflower. I took 400mg day x 6 months. It works as an antiestrogen much like Tamoxofen, it alters the pathway of the so called bad estrogen that we produce out of the liver. Well the treatment was nothing short of miraculous, for the first time in 20 years my pain almost resolved and my endo was arrested. Within 8 mos. I conceived and my son is now 2and a half!! I had spent thousands of dollars and countless visits to a reproductive endocrinologist who was never able to do what Indoplex had done for me in 8 mos. I still take it everyday. I might add that I have a husband and son with Celiac.

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You are very lucky I suffered with endometrosis for 17 years at 33 yrs had total hysterectomy,I dont know about endo being related to Celiac but if you look up Endometrosis Org smothing or other They say its related to Candida ( overgrowth of yeast) which of course I didnt find out until about 4 or 5 yrs after hysterectomy. And they claim if you follow a yeast free diet you can overcome it.??

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Five years ago I had a Hysterectomy due to severe Endo. They didn't know it until I had the surgery.

Before the surgery I had my period 28 days of the month. When I went for an ultra sound They found that my tubes were 10 times the size they should be. They decided I would be better if I just had the surgery. Well now 5 years later I was just told last week that I have Celiac. Which I had been trying to tell them for 11 years when I was dx with IBS. Tuesday I go to the liver specialist to find out the results of my liver bio. Has not been a good year so far.

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HI, I have endo too. I"ve had it since I began my cycles at age 13. It wasn't diagnosed until I was about 21. Since I went gluten free, in Nov 2005 I have seen a huge decrease in pain, especially about a week before my cycle starts. Not to say that I don't hurt, but it's considerably different. There is a good resource for endometriosis at .http://health.groups.yahoo.com You have to sign up for the board, but it's free. :)

Nicole

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Just curious- can you have endometriosis without knowing it? Many of these posts make it sound painful. My gran had a "tipped uterus" and my mom said it took a while before she was conceived. I googled it and found that endometriosis is one cause for this. I don't remember hearing much about it being painful... so maybe she didn't get it from endometriosis. She did eventually have a hysterectomy though.

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I was told last year that I probably had endo as well. I did (and still do) feel uncomfortable with the diagnosis. But the monthly is bad from ovalation to the day after I start. Currently that is about 14 days. Each day it gets worse!

Munchkinette. I also have a tipped uto, but they never said there was a cause? I am at the point now where really they could just take it out!!!!

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Guest nini
Just curious- can you have endometriosis without knowing it? Many of these posts make it sound painful. My gran had a "tipped uterus" and my mom said it took a while before she was conceived. I googled it and found that endometriosis is one cause for this. I don't remember hearing much about it being painful... so maybe she didn't get it from endometriosis. She did eventually have a hysterectomy though.

I don't know. I suppose it's possible, but with me and most of the women I know with endo, the pain is SO severe that it can literally bring you to your knees. Sometimes it got so bad before my surgery that I would be standing there having a perfectly normal conversation then the pain would hit and it would literally drop me to the ground. I'd curl up in a ball and not be able to move. I spent many days in bed with heat packs on my belly cos I couldn't get up. One of my co workers just had a partial hysterectomy because of the endo and polycystic ovaries.

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Guest Robbin

I have fibromyalgia and had a tipped uterus and endo. I had a hysterectomy at 33 and wish I had known what I know now. Perhaps I could have healed enough gluten-free to have had another child. Who knows, but I have the pain of fibro still too, so gluten-free is not the cure-all for me anyway either. My periods were increasingly painful, heavy bleeding, and blood clots the size of my hand. It was a nightmare. I wish I could have avoided the hysterectomy, though. I was so severely anemic and weak I could barely walk. I still tell women though, avoid a hysterectomy if at all possible. It really sent me into a depression and I still feel the ache when I think of the children I will never have. I do feel sooooo blessed to have the two difficult ones I do have!! I went through the whole nightmare of infertility and had a delivery with my first that sounds alot like nisla's experience, and my second I was bedridden for the last three months with gestational diabetes, blood pressure problems and the fibromyalgia. The delivery was so long and difficult, the dr. had to use forceps. I ended up with a broken tailbone and herniated disk. Hey, the little guy was sooo worth it!!!!!! :)

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I too was diagnosed with endometriosis in my early 20's. I was told at the time that I would have a 50/50 chance of ever being able to have children. Well, I guess I proved him wrong (see signature!)

When I had my last physical, the doctor said I had an enlarged uterine wall (not endo, but something else, I forgot the name she used....) She said we would keep our eye on it to see if it gets any worse. I know that each month I have my periods, I have a pain that feels like a knife stabbing me. It's brutal!

When I go back to see her, I am going to tell her it is getting worse and I want to see a OB-GYN.

Karen

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I was diagnosed on the operating table while the surgeon was trying to stop hemorrhaging. Result total hysterectomy, bil-lateral oopherectomy (age 30). I had suffered and suffered all my life (told I was crazy etc.) when the truth was my abdominal cavity was covered in endo and I was an undiagnosed Celiac.

As to whether or not there is a link, I don't know but I'd be interested in any research on the topic.

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I also have endometriosis and have pretty severe pain during ovulation and my period. I found out about it after I had surgery performed on an ovarian cyst. I see a rheumatologist and she mentioned that in her own research, she's found that endometriosis is considered an autoimmune disorder and that the scientific community is trying to fully comprehend how a woman develops endo. A lot of autoimmune disorders tend to develop in clusters, so it certainly could be related to celiac. Boo hoo hoooo.

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Karen, those are excellent articles and I appreciate you sharing them.

I imagine (hope!) that the generation being born now will not be misdiagnosed and will not suffer the way so many of us have and that physicians will have a firm grasp on this entire puzzle. It would be wonderful to think of future generations being spared the misery we have endured.

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Yes, I had it too really bad. Then I had a Hysterectomy at a young age early 30's about 10-years ago. I wore a HRT patch Vivelle 0.05 I went through major stress and not long after was when I peeled it off for good I ended up sick with celiac disease. I'm wondering if I should go back to HRT again...

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