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My apologies to all for not posting this summary earlier. I have been tapering my dosage of prednisone to treat another autoimmune condition and have encountered some complications. Thank you for your patience!
Currently, my sister is waiting to receive her CD antibody results from her physician. She has a follow up appointment scheduled with her PCP for next week. In the meantime, she is attempting to schedule a consultation with a gastroenterologist because her abdominal ultrasound also indicated a potential problem with her gallbladder.
I was impressed by the number of responses to this inquiry which totaled almost thirty. I appreciate the time that everyone spent recalling their experiences with CD and ovarian cysts. Your responses were very informative. As an autoimmune condition, we all know that CD can affect multiple organs and systems with severe consequences.
Only two individuals out of 30 mentioned that they were diagnosed with ovarian cysts after embarking upon a GF diet. The majority learned about the cysts many years before receiving a formal diagnosis of CD. Several respondents stated that their ovarian cysts did reoccur on a GF diet but not with the same severity or intensity. The verdict is still out whether gluten sensitivity does indeed contribute to the formation of ovarian cysts.
However, without further ado, allow me to present you with a sampling of some of the responses from your cohorts:
1) My dr, who is really up on nutrition unlike most, told me that ovarian cysts are related to both B12 deficiency and iodine deficiency. Since celiacs seem to have trouble absorbing both of these things, I think there is a relationship.
2) I was dx with cysts first, several years before my celiac dx. They are difficult, especially if they are not under control - but it is pretty easy to get under control - i.e., by staying on birth control pills (by the way, it also helps to stay on them for ~3mo before getting her period). I am not sure about the link to celiac, so I did a "Google" search and found the following interesting things --- I hope they help! Good luck to you and your sister! http://www.glutenfreeforum.com/index.php?showtopic=35636http://www.pslmc.com/CustomPage.asp?guidCustomContentID=%7B74308381-B9C4-4237-95F2-C5F2962F5012%7D
3) I was diagnosed with Poly Cystic Ovarian Disease (which means ovaries with lots of cysts) in 1978. I had two surgeries, had a miscarriage and eventually had a hysterectomy in 1991. I was diagnosed with Celiac about two years ago...but I really think I've had it for a long time. I had a specialist for the ovarian issues who is not longer around and my current doctor, albeit very nice, doesn't know very much about celiac...in fact I am his first celiac patient so he and I are co-treating myself. I also had read about the infertility and have wondered about it.
4) Dr. Ron Hoggan recommended the following journal article: Kuscu NK, Akcali S, Kucukmetin NT. Celiac disease and polycystic ovarysyndrome. Int J Gynaecol Obstet. 2002 Nov;79(2):149-50
5) I have had a history of ovarian cysts since I was in my 20's. (I am 46 now). I went undiagnosed with CD for most of my life and finally found out that I have CD. The diagnosis was 4 years ago and I am strictly gf. I too was told I would never have children, etc. However I did get pregnant and have 2 children. Since going gf I have not had any cysts on the ovaries! I am not sure if there is a correlation, but I am not experiencing the problems with the ovaries that I have had all my life. I would recommend the celiac panel as it is hereditary and since you are a celiac, she may be as well.
6) I had 10 years of infertility problems, and I also had a benign tumor on one ovary years before I was diagnosed with celiac or before there is the awareness and help that there is now. As I look back, had I been diagnosed with celiac in my twenties when I had severe stomach, intestinal, and fertility problems, I could have avoided so many heath issues. I did not have cysts, as you ask for experience in that area, but I just wanted to express my thoughts to you. My hope is that through further awareness, OB/GYN's will learn to test for celiac in these cases before years of heartache and invasive tests to women.
7) At 25 (1965) I was having problems getting pregnant and was found to have ovarian cysts (polycystic ovaries). They were crusting the ovaries so the surgeon (in UK) performed a wedge resection which removed 2/3 of my ovaries. This surgery is no longer done. I got pregnant immediately and Susannah was born 10 months later. I had a second child 2 years later and at my post natal was found to have one large cyst on a stalk, so it had to be removed in case it twisted. They took my right ovary, so I was left with 1/3 of one ovary. Three years later I had our third child. So the quantity of ovarian tissue left does NOT affect fertility. If I knew then what I know now, I would have taken the Pill after surgery. My hormones were all over the place and it was like an early premenopause, as I was just miserable temperamentally. I had a very easy menopause in fact and felt wonderful for the first time. Because of recent research showing a link between loss of ovaries and dementia, I would have had my estrogen levels tested and supplemented, although I refused HRT, even with the bone loss.
8) I had stage 4 endometriosis with chocolate cysts and surgery to remove them. Surgery helped but my gyn told me it would get worse again. It did get worse, but several years later I went GF and I feel like I my endometriosis has resolved. My pelvic exams are now painless and my gyn says everything in there moves around much better.
9) I was diagnosed with PCOS in 2001. It resolved completely when I was diagnosed as celiac in 2006 and went gluten-free. My cycles are now normaland I have no infertility or other difficulties.
10) I really don't know if there is a connection, but it happens that I too had ovarian cysts when I was in my 20's. Had to have one ovary removed. Never even thought about a relationship to Celiac. It will be interesting to see what you find out.. I was diagnosed (with CD) in my 50's.
11) I have had cysts and growths everywhere. On my ovaries, in my breast, inside my uterus and (now the worst) a meninges brain tumor, removed last Feb. ALL, thankfully, benign. I also have way more "skin flaps" than the average Jane, that's for sure, and I am not that old!
In any event -- who knows what causes ANY tumor or abnormal growth? The medical community doesn't seem to know much at all. But having basic nutrients compromised, as those with celiac have, seems like it could have some connection -- but who knows what?
Thanks again to all who responded!
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