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Endometriosis & Celiac
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Hello from a newcomer,

I was glad to find this site and have enjoyed reading some of the posts. I jumped online after eating a sandwich made with Ezekial bread..."sprouted" wheat. I heard this wheat was somehow different and thought I could tolerate it...it's not working. Perhaps the difficulty is that I haven't actually been diagnosed with Celiac. I do, however, have endometriosis. I have also gotten extremely sick when I eat. It seemed liked Atkins and South Beach diets helped me feel better when those came out. Then I learned about the endometriosis diet last year--no wheat, soy, meat, dairy, sugar, caffeine or alcohol. Doing this EXTREME and difficult diet relieved stomach pain. But I found my INTENSE stomach pain flared up when I cheated with wheat/gluten (my fav food). That's when I learned about Celiac. So, my question to the members is, do any of you also have endometriosis? I'm curious how oftenthe two co-exist.

Much thanks,

KD

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I have never been officially diagnosed with endometriosis, although I believe I have it. I do have celiac disease by the way. I have always had painful periods, cramping, pms; but it has lessened in the last couple of years as I believe I have 'entered' perimenopause (however, other celiac related problems have worsened - you can't win ;) ).

So, whether endometriosis is related to celiac, I can't say (but I suspect so); and I sure have a lot of the same problems that everyone else with celiac has.

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I have both celiac and endometriosis. I am new to celiac as of April of this year, and the diet has actually helped my endo quite a bit. I was diagnosed with endo when I had a tumor the size of a softball removed from my ovary!

The first few months of the diet didn't change my endo symptoms. I decided to go off the pill this past cycle, and any other birth control when I realized that all of my symptoms were lessening, and were almost non-existent the few days after my period had started. When I was on birth control I would then get horrible d again once I started on the pill, patch, ring. I've tried it all and none of it seemed to coincide well with my celiac. This past period was the best, now that all of the drugs are out of my system and I am all natural, so to speak. I had very little cramping, no headache, and only d for one day when my period started.

Hopefully this wasn't TMI, just wanted to pass along my info in case it was helpful.

Terri

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I think there is a link. On endo sites, under dietary topics, it is suggested that wheat is avoided for those with endometriosis.

My theory is that the chemical mediators of inflammation released by the body in the gut from the gluten reaction causes further inflammation of the endo. I think it could also work in reverse as well.

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I, too, was diagnosed with endometriosis after a ovarian cyst removal surgery. The doc cauterized all that he saw, and I never had any issues with extreme menstrual pain, etc., so I have no idea if going gluten-free has helped.

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I also had endometriosis--it was discovered during my hysterectomy a year ago.

I did a bit of research, and I found that there may be an autoimmune link.

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I have endometriosis, celiacs, and gastric paresis. All of these disorders according to my GI specialist are related. They are immunodifficiency disorders or otherwise your immune system attacks things that are supposed to be left alone. The endometriosis can make intestines flair up and it is caused by similar things but in that way only are they related. If you have endometriosis you should get it treated. You can be tested for Celiacs its a simple blood test if expensive but you MUST be eating wheat before you take the test or it wont come back correct. Good Luck. Either diagnosis is no picnic.

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I also have celiac and endometriosis. My gynecologist said that it is true that many celiacs have it, but they are both common enough that it could be coincedental. I think she is probably right! My pain has been better since going gluten-free, but I've also switched medications so that sould be it too!

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Hi KD,

I'm a newcomer too. I DEFINITELY believe there is a link between endometriosis and celiac. In my case, I had exploratory pelvic surgery in 2004 that showed no signs of adhesions, endo, etc.

In June of 2006, I had an appendectomy followed by 6 months of intense illness--I was diagnosed with celiac that December. Some months later after being on the gluten-free diet, I was complaining of lower right quadrant pain. The doctors didn't have any answers; in October 2007, I had surgery to remove a fibroid and a dermoid in one of my ovaries. During the surgery, the surgeon found that I had Stage 3 endo and both of my ovaries were embedded!

I'm convinced that the endo, which also a disease of the immune system, was somehow triggered by the celiac.

So you're not alone!

KK

Hello from a newcomer,

I was glad to find this site and have enjoyed reading some of the posts. I jumped online after eating a sandwich made with Ezekial bread..."sprouted" wheat. I heard this wheat was somehow different and thought I could tolerate it...it's not working. Perhaps the difficulty is that I haven't actually been diagnosed with Celiac. I do, however, have endometriosis. I have also gotten extremely sick when I eat. It seemed liked Atkins and South Beach diets helped me feel better when those came out. Then I learned about the endometriosis diet last year--no wheat, soy, meat, dairy, sugar, caffeine or alcohol. Doing this EXTREME and difficult diet relieved stomach pain. But I found my INTENSE stomach pain flared up when I cheated with wheat/gluten (my fav food). That's when I learned about Celiac. So, my question to the members is, do any of you also have endometriosis? I'm curious how oftenthe two co-exist.

Much thanks,

KD

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HI,

I have had endometriosis since my cycle started as a kid, age 13, but I had no idea what it was at that time. I had surgery in 1994 before I found that out in college. In 2005, I found out about celiac and discovered that it helps a lot of my left side pains that I had attributed to endo. IT also helps me to be much less nauseated just before my cycle begins. I used to vomit all week long before it began, blah! and I used to get dead fog head too....where I couldn't even think, let alone move.

I have to admit, I feel the best I ever have on this diet and when I get down about it, I have to remember how sick I was before this diet.

Nicole

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I am probably having endometriosis too. I am having surgery done in February for it.

I actually got less PMS from a gluten free diet, but I have had more pelvic pain. The pain might have been worse eating wheat though, who knows.

I am curious, did the surgery help you enough to make a difference and has it been enough with just one surgery? I have heard it can come back.

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Hello, KD,

I'm brand new to this site, but I saw your post and just wanted to say YES, I also have both Celiac and a long history of endometriosis (4 surgeries in 20 years). I having the darndest time sorting out what's a Celiac symptom (in terms of stomach or intestinal pain), what's scar tissue from my surgeries, and what's the endo. It's driving me crazy. I get intestinal pain so severe each morning that I can't leave the house until after noon each day. The diet thing is really a challenge. My best success so far was with the Body Ecology Diet, which is basically a food combining diet meant to treat Candida (which I also have). I guess I felt best on it. I feel worse when I start eating dairy again, but I'm so underweight, I need the dairy to keep the pounds on.

I'll write more later, but I just wanted to tell you you're not alone. I suspect there are a lot of us out there! Take Care,

Teresa

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I have both too, and my endometriosis symptoms got a lot less worse when I came off gluten - my cramps went, my bleeding was less. Unfortuntely, it's now too far gone, and I have to have an operation and I can't help wondering - if I'd gone gluten-free earlier,would this operation now be necessary? Anyway, I told my consultant about being gluten-free helping my symptoms and she said a lot of women had mentioned that, and there was some research beng done into it.

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I have endometriosis, stage 3, with infertility issues. (2 surgeries so far)

I do not have celiac. I came here because I had heard about a lnk between endo and gluten intolerance and thought I would try gluten free and see if it helped the endo.

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I have endometriosis, stage 3, with infertility issues. (2 surgeries so far)

I do not have celiac. I came here because I had heard about a lnk between endo and gluten intolerance and thought I would try gluten free and see if it helped the endo.

Hi! I am Swedish and found this site when I was trying to find out more about celiac disease, since I was diagnosed 6 months ago. I also have endometriosis. My doctor informed me that Karolinska Institutet, the biggest hospital in Stockholm ( the one who decides who's going to get the Nobel Price of medicine) published a study last year which confirmed the link between celiac/endometriosis and something called interstutionell cystit ( or something rather like it, stopped listening after the first two). So at least in Sweden there's a confirmed link between endometriosis and celiac disease. Hope that helps.

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Hello there,

I HAD A HYSTERECTOMY AFTER YEARS OF MYSTERIOUS BLEEDING AND PAIN, THEY SAID IT WAS ENDO. I DIDN'T KNOW ABOUT GLUTEN INTOLERENCE THEN SO COULDN'T TRY OUT GLUTEN FREE TO SEE IF IT GOT BETTER. LIFE GOT 50% BETTER AFTER THE HYSTERECTOMY -WHAT BLISS, NO PAIN OR PERIODS. tHEN ANOTHER 50% BETTER ON GLUTEN AND MILK FREE. i STILL GET A SHARP STABBING PAIN THAT HAS ME CURLED UP IN A BALL UNABLE TO MOVE FROM TIME TO TIME. DOC SAYS ITS AN ADHESION FROM ONE OF THE MANY STOMACH OPS THAT TWISTS IF I GET A BIT CONSTIPATED, ITS LOWER RIGHT. SORRY ABOUT THE CAPS, DON'T KNOW WHAT TO DO ABOUT IT.

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My 19 year old had all the symptoms of endo. Extreme PMS. Unable to sleep. Huge blood clots. Bleeding to the point of almost passing out. Pain in her ovary. More... So I took her to an osteopath thinking it was endo. We found out she was gluten intolerant. Make a list of every symptom over the past few years and go to a homeopathic/nature type doc. My daughter has been mostly off gluten for 3 months. I asked her how her period was last week and she said she can't remember! We will pay attention to the next period. Just think of how many surgeries and unneeded doc visits b/c of not diagnosing gluten. My friend had a hysterectomy at age 22, (she's 38 now) many surgeries since, lots of pain, loss of work, many more health probs...she is short stature, allergies, bronchitis candida, poor immune system, thyroid probs, etc ...she must be a celiac without knowing it.

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Yes, I've had endometriosis for most of my adult life. In fact, it is one of the major factors besides my GI distress that led me to research celiac disease, because my symptoms were even more severe during my monthlies. I had horrible, shrill migraines for days which were getting worse, and such bad brain fog that I could get lost in my own house. I figured out on my own a long time ago to cut out caffeine, alcohol, and white flour, but I didn't know about soy. In fact, my best "period" food was salmon, miso soup (with tofu), and green tea. I would eat that during my worst days, and feel asymptomatic. I also avoided sodium. Of course, now that I am gluten intolerant, I see the other reasons why that meal was so good!

And today I have proof. After going gluten-free for the last month, my periods have been without any pain or symptoms at all, until yesterday. After 2 days of bleeding, I accidentally ate a speck of Chinese Black Bean sauce (wheat soy sauce) with my stir fry, and sure enough, the cramps and heavy bleeding picked up today.

I hate the frickin' stuff, it is evil!

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Hi, my name is Linda and I am new here. Been readin this site and there is so much it is kinda over whelming to me. I was diagnosed in Aug. 07 with Celiac. I went to a to a specialist to talk about what to and what not to eat. I am still having terrible pain in my lower mid stomach, from side to side. I had a hyster. in 86 but kept my ovaries. Having a scan a few months ago, reveled that I only have one ovary now. No one knows what happened to it. :o ...my question is, if any one knows, how can you tell if you have endo? If I didn't know any better, I'd swear I am going to get my period daily. Now my Dr. has suggested I go to the Mayo Clinc...this is TOUGH stuff. I feel for each and every one of you..

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Hi, my name is Linda and I am new here. Been readin this site and there is so much it is kinda over whelming to me. I was diagnosed in Aug. 07 with Celiac. I went to a to a specialist to talk about what to and what not to eat. I am still having terrible pain in my lower mid stomach, from side to side. I had a hyster. in 86 but kept my ovaries. Having a scan a few months ago, reveled that I only have one ovary now. No one knows what happened to it. :o ...my question is, if any one knows, how can you tell if you have endo? If I didn't know any better, I'd swear I am going to get my period daily. Now my Dr. has suggested I go to the Mayo Clinc...this is TOUGH stuff. I feel for each and every one of you..

Hi Linda, and welcome to the board. :)

The only way to know for sure that you have endometriosis is to have a laporoscopy. An ultrasound won't pick it up in most cases. I had stage 4 endometriosis (endo that has spread beyond the reproductive organs) that 2 separate transvaginal/pelvic ultrasounds did not pick up. It was found during my hysterectomy.

The funny thing is, I asked my doctor if I could have it since I had all the symptoms and she said that I couldn't because the ultrasound "didn't show anything". I found a new doctor. ;)

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Hi, my name is Linda and I am new here. Been readin this site and there is so much it is kinda over whelming to me. I was diagnosed in Aug. 07 with Celiac. I went to a to a specialist to talk about what to and what not to eat. I am still having terrible pain in my lower mid stomach, from side to side. I had a hyster. in 86 but kept my ovaries. Having a scan a few months ago, reveled that I only have one ovary now. No one knows what happened to it. :o ...my question is, if any one knows, how can you tell if you have endo? If I didn't know any better, I'd swear I am going to get my period daily. Now my Dr. has suggested I go to the Mayo Clinc...this is TOUGH stuff. I feel for each and every one of you..

Hi Linda, and welcome. I'm sorry to hear about your troubles. I hope everything works out for you. I have never been officially diagnosed with a laporoscopy, so maybe I just have really severe periods. But, I have all the symptoms, and I learned very early to change my diet so that I could be functional without debilitating pain. I figured out my diet tis pretty much the same as diets that I've seen recommended: no caffeine, no wheat, no alcohol, no dairy, no extreme foods for sugar, fat, or salt, lots of Omega-3 foods.

I also drink a lot of green tea and eat fatty fish like salmon, tuna and sardines.

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Hi,

I was told at around 16 that I had endometriosis and put on the pill to try and regulate my periods. I had such severe pain that I would pass out or vomit and I would sometimes bleed for weeks.

I had been on the pill for about 7 years when I was diagnosed with celiac disease. I have gone off the gluten and off the pill and I think that my periods, although still painful, are probably pretty normal these days.

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My Dr suspects that I have endometriosis, but since the only way to confirm is surgery, we are trying medication first. I take the BC pill continuously and if that starts to not work, we will try Lupron. I have been gluten-free since January of 2006, though I did not have a biopsy to confirm Celiac, I did have positive blood work.

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I have had Endo since my teenage years, confirmed with laparoscopies in my early 20s. I am now 36, diagnosed with Celiac a little over a year ago. I remember reading about an "Endo diet" more than 10 years ago - it didn't seem very plausible to me at the time. I wish I had tried it (but I probably would have screwed up & kept non-wheat forms of gluten in my diet, like barley malt in cereals).

I have had numerous functional/reproductive issues over the years, including dysparunina, pain with walking/standing/exercise, difficulty conceiving (TTC 13 months before 1st pregnancy), multiple miscarriages, difficult pregnancies, etc. I do have three wonderful boys today.

Since being diagnosed with Celiac, I have definitely noticed a connection between my endo symptoms and food. Everythinng is better off gluten - and I mean everything.

To anyone - if you have endo, you owe it to yourself to try a few months gluten free - instead of waiting a decade to find out it makes life so much better. If it doesn't help you, then at least you've done your best to try a FREE, drug-free treatment.

My endo is not completely resolved off gluten - but the worst symptoms are long gone. I suspect there are other dietary triggers for inflammation which may vary from person to person. For me, dairy, soy and corn are things to consume in small amounts (& watching for symptoms).

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Dr. thought I had Endo in my early 20's. I had horrible pains with my periods and would bleed heavily and clot. I also had pain during intercourse. And pain when I had to go poop. It was awful. Both my Mom and Sis had Endo and both had hysterectomy by mid 20's after done with babies. But I was nowhere near ready. No babies for me till 27. Anyway, I had a laparoscopy and what they found was a basket weave of adheasions from an abdominal surgery I had when I was 13 (appendix). The Dr. cleaned it all up and I have been pain free ever since. I had no problem conceiving. And even though he said there was a chance I could get adhesions from his surgery and I might need a "clean up" again in about 10 years, it has not happened. It has been over 17 years ago. :)

So if you have EVER had abdominal surgery of any kind, adhesions could be the cause of your pain.

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    • I think the gene tests are accurate.  Not sure if thier interpretation of them is.   If you actually think have Celiac, you need to know that.  You  need to know how careful you must be.  You need a diagnosis to get gluten-free food in hospitals or nursing homes (if you can find one that does gluten-free food).  Because thsese "stool tests" are not medically accepted, it is unlikely that a real medical facility will consider you to have Celiac.   http://www.cureceliacdisease.org/faq/why-dont-you-recognize-tests-stool-tests-or-otherwise-for-gluten-sensitivity-that-are-currently-available-through-companies-like-enterolab-or-cyrex/
    • Why would your doctor order an endoscopy and check for celiac disease, but not order a celiac panel?  Had you been gluten free already?  
    • Thanks cyclinglady ... just wondering, do most of the people on this forum believe the Enterolab stool / gene testing to be non-trustworthy? Or are you just recommending a diagnosis from my MD so that she is also treating me with full belief/knowledge of my condition? I've been gluten free now for 2 weeks - by the time I get in to my doctor, she orders the bloodwork and I get to a lab it could be another 2 weeks before the bloodwork is done. From what I understand, just a month of gluten free eating could skew the results of the blood test. Supposedly, the stool tests are much more accurate. I hate to go backwards and start eating gluten again just so I can have a blood test done that may or may not substantiate the results of the stool / gene testing. I'm so confused ...
    • Try to stick to a whole foods diet.  Things like unseasoned stew, soup, etc.  Things easy-to digest, preferably not processed by a anyone except you.  Too often new celiacs start using gluten-free foods (cookies, bread, crackers).  Your body is not used to these grains and they often contain lots of junk.  For example, I react to Xantham gum.  It does not bother my gluten-free hubby, but it gets me every single time!   Did you read our Newbie 101 thread under "Coping"?   It contains lots of valuable tips.  Make sure those meds are gluten free.  Supplements too.   I hope you feel better soon!    
    • Here are the actual tests.   http://www.cureceliacdisease.org/screening/ Insist on the complete panel.  Let them know (your doctor) that your father had celiac disease.   Document in writing!  If you have celiac disease, your life can be improved.  All the things I attributed to aging were actually related to celiac disease.  It is never too late to feel well!  I am in my 50's but my Aunt iis 81.  We celebrate a Gluten free Thanksgiving every year!   Oh, my kid does not have celiac disease, but she is tested every few years even though she is symptom free!  There are silent celiacs.  My symptom?  Anemia.  No tummy issues.   Please advocate for your health.  Keep all records.  Doctors can not ignore written facts and requests.    
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