Celiac And Endometriosis

[1GreysFan]

I have endometriosis. I was diagnosed via laparatomy in 07. I have also had stomach issues that would sometimes come and go. I have seen a GI dr and have had a bunch of tests run and on one report from an endoscopy it showed some sort of inflammation. Pathology stated maybe the onset of celiac. I didn't think about celiac previously, but stomach issues continued to get worse and I have vitamin, etc deficiencies.

Is there anyone that struggles with endo and celiac? Could it just be endo causing problems? I don't know how to tell the difference. I have started a gluten free diet, but have only been on it for a few days.

Thanks for your input!

GreysFan

[HAK1031]

There are quite a few of us...there was a thread about it a while ago, you might want to do a search. Endo is an autoimmune disorder, making celiac more prevalent in those who have it. I asked my gyno if there was a direct link, and she said it was hard to tell, as both are so common that it's hard to tell if it's coincedental.

Endo wouldn't cause vitamin deficiencies, and you might be suprised how your symptoms change after being gluten-free. For example, my celiac symptoms (alternating D and C, bloating, gas, etc.) always got worse during my period. Now I just have the endo pain. Good luck!

[April in KC]

GreysFan,

There are a lot of us. I am 35 now. I had my first diagnostic laparoscopy for pelvic pain when I was 23. It got so bad in my 20s that I had pain almost all the time in between periods - I had dyspareunia and also pain with almost any form of exercise or even just walking for too long. It was really, really bad for the quality of my life and at times I felt depressed by it all.

I had some GI issues as a young child, but I certainly did not have all the typical Celiac symptoms as an adult. I did have recurrent apthous ulcers (mouth sores) from time to time. My OB/GYN oberserved that I had some "autoimmune tendencies" and sent me to an immunologist at the time. He was able to observe a few things that correlated to an autoimmune problem, but I tested negative for lupus and some of the other things they were concerned about at the time.

Probably 10 years ago, I heard some inklings of an "endometriosis diet" that involved giving up wheat and other things. I remembered thinking it sounded a little bit hokey. I wish I had paid attention sooner.

I went on to have years of problems with endo - sub-fertility and eventual difficult pregnancies, recurent miscarriages and always the pain. I am blessed to have three sons today. The pain would always flare worse in the first trimester when estrogen spiked and then some blessed relief during the later trimesters and during breastfeeding when the hormone mix was different. But whenever I stopped nursing and my periods came back, the pain would pick back up in a hurry. I always thought I would have to get a hysterectomy when I was done having kids, and I dreaded that.

Thankfully, I was diagnosed with Celiac about a year ago. For reasons related to my infant son's problems with food and eczema, I went not just gluten free, but dairy, soy and grain free as well...initially. It was harsh, but keeping those other foods out of my diet for a period of time helped me understand how each of them impacted me when I reintroduced them. I believe that an elimination diet and then reintroducing the food with a BIG serving to help yourself see the effects has a big value.

Today, I am still gluten free and will be for life. On a daily basis, I do not have pain. Zero. No "hot spots", no pain while walking/jogging or with intimacy. My periods are better - some have been pain free. I cannot believe this is my life - I feel so blessed. I absolutely believe that the gluten had something to do with my endometriosis. But I also believe there are other foods as well. For each person with endo, I think it is worthwhile to do a very hard TED (total elimination diet), eating just meats, veggies and fruit for a while, and then reintroducing other foods. It could be the hardest thing you ever do (breaking addictions to gluten and dairy can be very difficult), but if it is very difficult, then that is a huge sign that you could have problems with those foods.

For me, the long-term recipe has been:

NO gluten

LIMITED AMOUNTS of dairy and soy

For example, I don't drink milk or eat butter anymore, but I will eat a little cheese on a gluten-free restaurant meal as a treat. I drink Almond milk for my cereal, etc. I do eat rice now without difficulty.

I discovered that if I eat a pint (or more ha ha) of soy ice cream, I will have a minor flare of my endo pain spots the next day. So I do believe that soy has an estrogenic effect and helps the body manufacture estrogen.

[cmbajb]

Hi, I'm new around here, so I'm learning alot. I have endometriosis and had a surprising horrible flare-up the end of last year. I went gluten-free in April of last year. One thing to consider, too, is food allergies. I have been on an elimination diet for about a month, and have already found that I am allergic to chocolate, eggs and something in beef broth. Way different than my gluten intolerance.