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looking4help

Endometriosis/female Issues And Celiac?

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Ok, as many of you now know I have already fired 1 GI dr for lack of brains in her head. I have hired a new one and really have figured out if he "gets" celiac or not. He is doing a let's check it off approach.

I am ok with this because I do have multiple issues and need to make sure a hernia in my diaphragm is truly not in need of surgery as a surgeon I saw stated.

I have always had issues with UTI's, bladder and kidney infections. So anyways, the new GI dr wants to check for endometriosis. I went to OB yesterday and got the regular pap etc. She states that my urine test shows guess what another bladder infection. NOT surprising for me. She also agrees to check for endometriosis so I now have a vaginal ultrasound set up for next week and I have to get a laproscopy as well.

My question is this: What are some of the female issues some of you may have had with celiac? Do you think they are related? Experiences? etc.

Thanks again for all the help!


Self Diagnosed April 2010

Gluten Free April 2010

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Yep, celiac 100% affects fertility. They aren't sure why, but it does, and whenever you read a list of possible things Celiac can do to your body, infertility is always on the list. I had unexplained infertility for fours years, 10 IVFs and 4 miscarriages until diagnosed last year. And 5 months later- we are newly pregnant.

It's a good idea to check for everthing. I've had a lap and it's not that bad, just some cramping and soreness for a few days afterwards. But if you are trying to get pregnant, how celiac affects your body probably won't been physically, as it somehow affects the systems/hormones (they aren't sure.) I hope you get your answers!


-Started TTC 4 yrs ago on my 30th bday. Unexplained infertility. 7 IVFs with my own eggs, 3 more IVFs with either donor eggs, surrogate or both.

-4 miscarriages including a devastating one at 20 weeks.

-Dx w/ celiac disease via bloodwork, endoscopy, biopsies, gene panel in 1/2010.

-Was told this was why we lost our son at 20 weeks; told to go gluten free asap and try again in 6 months.

-Very active in the infertility world, have lobbied in DC twice for infertility healh insurance, adoption tax credit, etc.

-Celiac disease testing will now be my new crusade. If fertility docs test for other autoimmune diseases in their workups, WHY are they not testing for this??

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Ok, as many of you now know I have already fired 1 GI dr for lack of brains in her head. I have hired a new one and really have figured out if he "gets" celiac or not. He is doing a let's check it off approach.

I am ok with this because I do have multiple issues and need to make sure a hernia in my diaphragm is truly not in need of surgery as a surgeon I saw stated.

I have always had issues with UTI's, bladder and kidney infections. So anyways, the new GI dr wants to check for endometriosis. I went to OB yesterday and got the regular pap etc. She states that my urine test shows guess what another bladder infection. NOT surprising for me. She also agrees to check for endometriosis so I now have a vaginal ultrasound set up for next week and I have to get a laproscopy as well.

My question is this: What are some of the female issues some of you may have had with celiac? Do you think they are related? Experiences? etc.

Thanks again for all the help!

I have read that celiac can be related to endo. Definitely both seem to have autoimmune components. I have both. Endo was diagnosed in 2006 by laparascopy (although I already knew I had it, from my symptoms and from an endometrioma visible on ultrasound), and celiac diagnosed March 2010. I've had 7 miscarriages. 6 before a successful pregnancy, and one after. The one pregnancy that worked out, I got pregnant a month after my lap. Also, I had seen a naturopath and was taking lots of vitamins, so maybe if celiac was affecting my miscarriages, that helped. I don't really know why that pregnancy was successful...the doctor claims it wasn't related to the lap.

It's really hard to be dealing with multiple issues--it can be hard to sort out everything that is going on, and trying to coordinate between different types of specialists who don't know any other field can be frustrating too. Good luck sorting it all out. Be patient and keep searching for answers.

My endo pain seems much better now that I am gluten-free...maybe it was mostly celiac pain all along?

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Yep, celiac 100% affects fertility. They aren't sure why, but it does, and whenever you read a list of possible things Celiac can do to your body, infertility is always on the list. I had unexplained infertility for fours years, 10 IVFs and 4 miscarriages until diagnosed last year. And 5 months later- we are newly pregnant.

It's a good idea to check for everthing. I've had a lap and it's not that bad, just some cramping and soreness for a few days afterwards. But if you are trying to get pregnant, how celiac affects your body probably won't been physically, as it somehow affects the systems/hormones (they aren't sure.) I hope you get your answers!

Thank you so much for your response! I am so sorry to hear your journey but definitely congrats on the pregnancy! :)

I did not have probs with infertility as I am blessed with 4 beautiful kids. My oldest is almost 19 now. But I certainly have had so many urinary type infections ever since the first pregnancy.

It seems that my OB dr is more concerned about my female issues (really horrible periods for the last year, extreme pain in abdomen, many more infections than normal for me etc) than my other drs.

As I told her I don't care really what has to be done just SOMEONE find the cause of the pain!

I have gone gluten free and am working on seeing if I have other issues as well (soy etc). This last week has been HORRID in the bathroom. I just feel very depressed and am trying so hard not to give in to that feeling.


Self Diagnosed April 2010

Gluten Free April 2010

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My question is this: What are some of the female issues some of you may have had with celiac? Do you think they are related? Experiences? etc.

Multiple uterine fibroids, a compound cyst on left ovary, and a 7 cm simple cyst on the right ovary (But it disappeared on its own!) I'm 54, should be post menopause, but not there yet. Surgery had been strongly recommended, but I declined. No symptoms of menopause yet, other than a little crankiness (maybe :rolleyes: ) and in the time since I've been gluten-free, no menses, but that's just since April 30th.

Prior to celiac symptoms, I had very little in the way of female health issues.

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It took forever to diagnose me because all my symptoms were extremely similar to menstrual cramps. Sometimes if I get glutened during my period I STILL can't tell until the big D lol. My OB took a uterine and cervical biopsy thinking I had other girl things going on. I changed pills 6 times in 18 months because nothing made it better. Well...I have Endometriosis and ovarian cysts, but nothing that would make me THAT uncomfortable. Since addressing the gluten issue I have gotten a lot better with the cramps. I hope that your issues get better!! Sending healthy vibes :)


Diagnosed with Gluten Allergy April 2010. Family history of Celiac disease and bowel cancers. Already feeling a billion times better since going gluten free.

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Well I had polycystic ovaries, severe endometriosis, and fibrocystic breast disease. I ended up having to have a partial hysterectomy last November and last week they had to go back in and finish it off by removing what was left of my ovaries and remove a whole lot of endo. from my bladder. Sooo in other words I have had one female issue after another and the celiac disease was just something else to add to the list. :) Good luck with your lap. and I hope its turns out you dont have endo. cause has seriously been such a nightmare for me.

Ok, as many of you now know I have already fired 1 GI dr for lack of brains in her head. I have hired a new one and really have figured out if he "gets" celiac or not. He is doing a let's check it off approach.

I am ok with this because I do have multiple issues and need to make sure a hernia in my diaphragm is truly not in need of surgery as a surgeon I saw stated.

I have always had issues with UTI's, bladder and kidney infections. So anyways, the new GI dr wants to check for endometriosis. I went to OB yesterday and got the regular pap etc. She states that my urine test shows guess what another bladder infection. NOT surprising for me. She also agrees to check for endometriosis so I now have a vaginal ultrasound set up for next week and I have to get a laproscopy as well.

My question is this: What are some of the female issues some of you may have had with celiac? Do you think they are related? Experiences? etc.

Thanks again for all the help!

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Count me in to. 10 years of infertility, horrible cramps and heavy bleeding with D at each period from the time I was in my 20's, early menapause and when I had my tubes tied after I finally had 2 children the simple 20 minute max procedure turned into an over 2 hour one because of all the adhesions that I had in my abdomen.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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I had female problems from the age of 13. Heavy, painful periods in my teens, took 5 years to get pregnant with my first child.

Lived with the heavy monthly bleeding as long as I could, but along with the undiagnosed Celiac my life was governed by the time of the month and my stomach issues. For a solid week every month, I had to wake up every hour to change pads. I went to the gyn every year, and my symptoms were brushed off for years.

Finally had an ultrasound which revealed a large (8cm) fibroid outside the uterus, and multiple ovarian cysts. I was in my late 40's by this time and sometimes the pain would almost make me black out. I had enough--the endometrial ablation I had failed. I started a discussion about a hysterectomy with my gyn, and went ahead with it a month later.

At my post-op visit I learned that, in addition to the fibroids and cysts, I had stage 4 endometriosis (extended past the reproductive organs and caused the doctor to modify plans during surgery to protect the bladder), and adenomyosis (endometriosis that has infiltrated the uterine wall--extremely painful and found sometimes in women over 45 who have had prior uterine surgery-I had a c-section at 29).


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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I had female problems from the age of 13. Heavy, painful periods in my teens, took 5 years to get pregnant with my first child.

Lived with the heavy monthly bleeding as long as I could, but along with the undiagnosed Celiac my life was governed by the time of the month and my stomach issues. For a solid week every month, I had to wake up every hour to change pads. I went to the gyn every year, and my symptoms were brushed off for years.

Finally had an ultrasound which revealed a large (8cm) fibroid outside the uterus, and multiple ovarian cysts. I was in my late 40's by this time and sometimes the pain would almost make me black out. I had enough--the endometrial ablation I had failed. I started a discussion about a hysterectomy with my gyn, and went ahead with it a month later.

me too, but without the child part.


"But then, in all honesty, if scientists don't play god, who will?"

- James Watson

My sources are unreliable, but their information is fascinating.

- Ashleigh Brilliant

Leap, and the net will appear.

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Wow this topic has made me realize that he MYTH of "Oh it's just the monthly lil visitor" is so prevalent that even I thought that everyone else had it easy. Thank you so much for sharing your experiences, ladies. It makes me feel so good to know that I am not the only woman who has to curl up with a heating pad for a week a month and pop painkillers like candy. I'm totally feeling the (painful) love on this post. VIVA LA GIRL POWER!!


Diagnosed with Gluten Allergy April 2010. Family history of Celiac disease and bowel cancers. Already feeling a billion times better since going gluten free.

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I not only get endometriosis, but perimenstrual migraines. My endometriosis also took forever to diagnose because a lot of the damage was behind my ovaries and the symptoms were like PID on exam. They finally did a laser laproscopy and saw no PID scarring and lots of endometriosis. I take birth control pills for 9 weeks to spread out my miserable periods.

I had chronic UTIs for a while until I learned to take a gram of vitamin C at night from a friend. You can't absorb a gram so it goes into your urine and acidifies it, killing bacteria. Urinating after sex also helps prevent UTIs by flushing out bacteria that make their way up the urethra.

I never connected all the female issues to gluten.

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I not only get endometriosis, but perimenstrual migraines. My endometriosis also took forever to diagnose because a lot of the damage was behind my ovaries and the symptoms were like PID on exam. They finally did a laser laproscopy and saw no PID scarring and lots of endometriosis. I take birth control pills for 9 weeks to spread out my miserable periods.

I had chronic UTIs for a while until I learned to take a gram of vitamin C at night from a friend. You can't absorb a gram so it goes into your urine and acidifies it, killing bacteria. Urinating after sex also helps prevent UTIs by flushing out bacteria that make their way up the urethra.

I never connected all the female issues to gluten.

I find your post interesting. First what is PID? Second can you elaborate on the gram of vitamin C? Where do you buy it? Is it powder form? ETC?

Thank you!


Self Diagnosed April 2010

Gluten Free April 2010

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Wow this topic has made me realize that he MYTH of "Oh it's just the monthly lil visitor" is so prevalent that even I thought that everyone else had it easy. Thank you so much for sharing your experiences, ladies. It makes me feel so good to know that I am not the only woman who has to curl up with a heating pad for a week a month and pop painkillers like candy. I'm totally feeling the (painful) love on this post. VIVA LA GIRL POWER!!

Yes VIVA LA GIRL POWER! I agree so very much! I have learn and continue to learn so much on this forum.

No, you are not alone on the painful periods! Throughout the years I always had at least one day of my cycle that I felt like I was dieing. Unfortunately, school nurses, teachers etc did not "get" it. I was told to suck it up. It happens to all women. Just embrace my womanhood. I always thought I will LOVE to embrace my womanhood right around your neck!

Anyways, (calm slow breath haha!) my periods have been so very weird and HARD this past year. I thought maybe I was premenopausal or something but drs say no. I went from having about 3 or 4 day periods to have one massive day and then nothing for 2 or 3 days and then just a little spotting.

During the one horrible day I always feel like I am giving birth to some sort of demon but in fact ends up being HUGE clots and I do mean HUGE. I have never done that not even after giving birth to my 4 kids.

Anyways, I have found a GREAT OB and am scheduled for an ultrasound then a laproscopy checking for endo.

Hang in there! I now can say we are not alone in this world!


Self Diagnosed April 2010

Gluten Free April 2010

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I find your post interesting. First what is PID? Second can you elaborate on the gram of vitamin C? Where do you buy it? Is it powder form? ETC?

Thank you!

PID is pelvic inflammatory disease. It's when a vaginal infection like Chlamydia gets out of control and into the pelvis. The signs are pelvic pain with cervical pain and/or sharp ovarian pain on exam. I had them all, but the docs could never culture an infection and it turned out to be from endometriosis.

As far as the vitamin C, what I was told was to get a cheap, fast-dissolving tablet. You don't want a timed release, esterified, or anything designed to dissolve slowly because you're not trying to absorb it but rather have it go into your urine. 1 g is the same as 1000 mg and it's often easiest to find 500 mg tablets and take two. You take it with some water. As far as I know there is nothing dangerous about that dose of Vitamin C but you might check with your doctor.

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