[KD Jaye]

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

[Di_gfree]

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.

[gfmolly]

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

[SpikeMoore]

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.

[heathen]

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.

[jerseyangel]

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.

[JulesNZN]

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.

[HAK1031]

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!

[kkcambridge]

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

KD Jaye, on Dec 16 2007, 02:48 PM, said:

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

[hapy4dolphins]

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

[Yenni]

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.

[Teresa H]

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

[Michelle B]

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.

[kittykorat]

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.

[AnnaMaria]

kittykorat, on Feb 7 2008, 09:13 AM, said:

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.