Endometriosis & Celiac

[dally099]

hi there, i too suffer with endometriosis, i had my hysterectomy in march of 2006, 10 weeks after having my youngets. i have suffered as long as i can remember, since my teens, but was diagnosed at 21years old (imagine telling your boyfriend of 18months we need to have babies soon!) i was lucky and had 4 kids and only needed fertility treatments with the oldest. birth control pills were a nightmare for me, only made it worse, we think the celiac kicked in after my surgery, as my hysto kicked my ass for about 12 weeks as compared to the 6 that my surgeon told me for post op recovery, i remember getting horrible gas and stomach getting gurgly and sore all the time after i ate, then all the other symptoms came and by xmas of that year i was sicker than a dog and 95lbs. i believe they are related. good luck with your search!

[Better-Days-Ahead]

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

"Food For Life", makers of the bread line of products, makes a wheat-free bread line, and separate from these products, makes a gluten-free bread line. On one product line the packaging says, "flourless, wheat-free" and on the other line of products the packaging says, "Gluten-free". People, apparently, are generalizing -- incorrectly -- when they report that Ezekial bread is "....not gluten-free..." They need to purchase products in "Food For Life's" gluten-free product line. And no, I don't have a horse in this race but just want people to be correctly informed so that educated decisions may be made.

[ShayFL]

Most of the women in my family have endometriosis. I got lucky that way. But I wonder if gluten-free would have helped my Mom and my Sister. They have both had hysterecomies.

[dollamasgetceliac?]

Add That to my list , I think I have soooo many related diseases to Celiac it is amazing. I had a Laporoscopy in my early 30's that revealed Endometriosis.

I had to have a Historectomy , because of all my abdominal pain, last year I was ent back and forth to the OBGYN and the GI Doctors, untill they deceided that if they took it all out I only need to go to the GI.

When I finally saw a new G.I dosc he told me I had IBS , so I asked him then why did I have a Hystorectomy? He repleid "most patients that go to the Doctor overe and over they start cutting away your organs, you are lucky you still have your Gall, Blader, Tonsilsand the list went on"

So after they took out everything they did not find any Endo , I did have a Cyst and a Fibroid. They said that the reason they possibly could not find any Endo was because I had Taken the Lupron( Injection that stops your period). Then I wonder why it did not take the Cyst?

Any way I really wish that they would have tested me for Celiac first.

[ShayFL]

My god. I just dont let them cut me anymore. I had laparoscopy too in my 20's. Adhesions were causing my pain, but they expected endo cuz of family history. I had appendecomy, tonsilectomy, molars surgically removed. When my gyno wanted to mutilate my cervix, I drew the line. Im done with cut and burn therapy.

[HeartofGlass224]

I also had the same issues. I have been fighting Crohn's Disease for most of my adult life now, and a year ago, I had a hysterectomy after increasingly painful periods, during which I would bleed so heavily that I couldn't leave the house for the first few days....this progressed to spotting every single day, and 2 heavy periods a month, so after a failed ablation, and numerous ultrasounds that showed nothing, I opted for a hysterectomy, and the pathology showed endometriosis and adenomiosis. I chalked this up to the link in autoimmune disorders, especially since I *thought* my Crohn's had been out of control since the birth of my 4th child 3 years ago. I was diagnosed with Celiac just before Christmas of last year, with a solid diagnosis through a capsule endoscopy last month. Obviously to me, all of these conditions are related.

I wish you the best of luck with your health!

[TegalChicken]

Im 17 and have been a known celiac for about 4 years now, I'll admit i dont always eat gluten free (Its hard and i dont feel any immediate effects if its just a little!) so, i guess im pretty bad when it comes to it. The other day i saw a new doctor and she asked about my celiacs then about my periods, and i said painful and got pms, and concluded i may have endometrious which i was like well thats completely random. So perhaps there is a link. From one topic to change to another by a few questions, id assume so. If i went gluten free completely would it help? or make pregnancy easier later in life? (How difficult would this be anyway??)

[GlutenGalAZ]

Im 17 and have been a known celiac for about 4 years now, I'll admit i dont always eat gluten free (Its hard and i dont feel any immediate effects if its just a little!) so, i guess im pretty bad when it comes to it. The other day i saw a new doctor and she asked about my celiacs then about my periods, and i said painful and got pms, and concluded i may have endometrious which i was like well thats completely random. So perhaps there is a link. From one topic to change to another by a few questions, id assume so. If i went gluten free completely would it help? or make pregnancy easier later in life? (How difficult would this be anyway??)

Gluten has been linked to infertility and so has endo. The only way that endo can be really diagnosed is by a laparoscopy (ulta sounds are not accurate if you dr suggests this). I had a laparoscopy done end of January and have mild endo.

Both gluten and endo can affect pregnancy. I would suggest going completely gluten free. You don't want to be partial then later on when you are ready to have kids be malnurished of nutrients etc in your system, it won't be healthy for you or the baby if you were to get preg.

In regards to your question about gluten free helping with endo... There are some suggestions with endo diets to avoid sugar, wheat and other things. Before I knew I had endo I did notice a change with my really bad cramps after going completely gluten free.

Hope this helped some... Good luck with everything and Welcome to the Site

[purple]

Gluten has been linked to infertility and so has endo. The only way that endo can be really diagnosed is by a laparoscopy (ulta sounds are not accurate if you dr suggests this). I had a laparoscopy done end of January and have mild endo.

Both gluten and endo can affect pregnancy. I would suggest going completely gluten free. You don't want to be partial then later on when you are ready to have kids be malnurished of nutrients etc in your system, it won't be healthy for you or the baby if you were to get preg.

In regards to your question about gluten free helping with endo... There are some suggestions with endo diets to avoid sugar, wheat and other things. Before I knew I had endo I did notice a change with my really bad cramps after going completely gluten free.

Hope this helped some... Good luck with everything and Welcome to the Site

To add to this be sure you are taking your vitamin B and magnesium, it helped my dd alot and she has normal periods now. No sign of endo but she's not a celiac, allergic to gluten though.

[caramckelvey]

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.

Wow, that's great to hear! I'm Celiac and have endometriosis and thought they were linked but not sure. It's good to know that others are out there are just like me!

[NENE06]

I had stuggled with endometriosis from the time I was a teenager. Several surgeries later and finally a hysterectomy I was found to have endometrial and ovarian cancer. The doctors stated was a rare form and was not a genetic form. THANK GOD the cancer was only in the beginning stages. I still struggled with pain, stomach bloating. All doctors dismissed my stomach issues as IBS. finally through my own research I found the issue. I had to tell the doctors that this is what it is and I want to be tested. My doctor just blew me off, but through persistance I had a blood and GI test which to my doctors suprise came back as positive for Celiac Sprue. The diagnosis was confirmed only 6 months ago. I will turn 40 this year. So as to answer your question, I believe that endometriosis and Celiac are linked as well as ovarian cysts and cancer

[SGWhiskers]

Im 17 and have been a known celiac for about 4 years now, I'll admit i dont always eat gluten free (Its hard and i dont feel any immediate effects if its just a little!) so, i guess im pretty bad when it comes to it. The other day i saw a new doctor and she asked about my celiacs then about my periods, and i said painful and got pms, and concluded i may have endometrious which i was like well thats completely random. So perhaps there is a link. From one topic to change to another by a few questions, id assume so. If i went gluten free completely would it help? or make pregnancy easier later in life? (How difficult would this be anyway??)

I realize this poster isn't likely to get this response, but I'm adding it in case there are others that have this very good question.

I was diagnosed with endometriosis around 22 after suffering painful periods for years. The best thing for it is hormonal control (eg. the pill) if you can tolerate it. I couldn't and needed occassional narcotics and laparoscopies to manage the pain. I also suffered infertility that was blamed on the endometriosis. I went through a few stages of infertility treatment. At 31 I was told I was in perimenopause and would need an egg donor. At 33 I was diagnosed with Celiac. I saw very little change in the severity of my cramping after going strictly gluten free. After 2 years on the diet, at the age of 35 I discovered I was pregnant by complete surprise. My OB agrees it is likely that the gluten free diet is the reason I conceived naturally after all this time. This 2 year mark also coincided with a slight increase in my stamina level and some stability in my celiac recovery.

So in summary, in my experience, no, the gluten free diet won't significantly help the cramps, but will help maintain your fertility.

[teresahope]

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

I can confirm my pain went away from endometriosis after going gluten free, and diagnoses Celiac.

[Cheryl-C]

I too have endometriosis. I've had 3 surgeries in 8 years. My painful periods began in high school (around 14 or so) and have worsened steadily since then. I tested "inconclusive" for celiac because I stopped eating gluten before the test (I don't know if my Dr didn't tell me or if I just didn't understand...ugh) and I'm not going back on gluten to redo it.

I can't say for sure if there is a relationship between the two, but I think it's interesting that some of the symptoms of celiac (bloating, constipation/D, fatigue, etc) are also common symptoms of endometriosis.

By the way, does anyone else on here suffer from sciatic endometriosis?