Gluten-related Infertility Means Celiac?

[mhb]

I clearly have had gluten related infertility all my life ... never a regular period (by a looooong shot) until I went off gluten. Since then 6 in a row. Was treated for PCOS all those years instead. I went off gluten without testing, and I'm clear I belong off it, but I wonder ... I keep reading that celiac can cause infertility, but does anyone know of confirmed non-celiac gluten sensitivity causing infertility? I'm wondering if the infertility connection in me in itself means I have celiac, or if that could be non-celiac intolerance too. Maybe not enough data available on this? Some day I'll do the gene test out of curiosity.

[Bell]

I only just saw this post, after seeing you mention infertility in another thread, mhb.

I have wondered about this too -you know it was only reading online by chance that amenorrhea can be caused by celiac disease that sent me back to considering it, years after a previous self diagnosed (and not very thorough) attempt at living gluten free for digestive upsets.

I'm really hoping my period will come back when I've been "clean" for a while. It's been over a year now since the last one, and often only 2-3 a year before that. At 30 I'm hoping that no lasting harm has been done to my fertility, and that I can have kids. I was also tested for PCOS but nothing conclusive came back, plus nothing visible on my ultrasound scan, which has obviously been a massive relief. But being left without an answer has been worse in some ways.

My doctors never gave me any impression that anything other than PCOS could cause my periods to stop. I didn't have any other symptoms, no visible cysts, back then at least. If celiac disease can cause fertility problems, do doctors not know about it?

mhb, and anyone else, what other possibilities did your docs look into when you had your original problems?

[Mother of Jibril]

It's my understanding that celiac disease (and other autoimmune disorders like Hashimoto's, type I diabetes, Addison's disease, etc...) can be associated with premature ovarian failure caused by your immune system attacking your ovaries Have you ever been to a reproductive endocrinologist? Fertility can go downhill really quickly... I would look for a specialist ASAP.

[Bell]

It's my understanding that celiac disease (and other autoimmune disorders like Hashimoto's, type I diabetes, Addison's disease, etc...) can be associated with premature ovarian failure caused by your immune system attacking your ovaries Have you ever been to a reproductive endocrinologist? Fertility can go downhill really quickly... I would look for a specialist ASAP.

Oh heck.

I live in Britain, and our doctors are really reluctant to send you for test or do anything that costs money. Do you think I should push for something like that? I don't even know if it would be available. I do wish I'd bothered the doctors more along the way. I always felt like I was a hypochondriac. It was like groundhog day every time I went in regarding my periods. I tried different doctors, but they all said the same thing. Nobody offered any other possible avenues of research. I felt guilty even in insisting upon the ultrasound, specially since it came back all clear.

[Mother of Jibril]

I live in Britain, and our doctors are really reluctant to send you for test or do anything that costs money.

That's very frustrating I belong to an online discussion group for people going through pregnancy after a loss (miscarriage, stillbirth, infant death)... I know how hard it is for people in the UK, Canada, New Zealand, etc... to get aggressive medical care, even when something is clearly wrong.

It's not normal for your periods to stop at age 29. Be hopeful that the gluten-free diet will help, but in the meantime... do start pushing for some tests! Even if you're not actively trying to have a baby right now, tell your doctors that you are.

[mhb]

I'm really hoping my period will come back when I've been "clean" for a while. It's been over a year now since the last one, and often only 2-3 a year before that. At 30 I'm hoping that no lasting harm has been done to my fertility, and that I can have kids. I was also tested for PCOS but nothing conclusive came back, plus nothing visible on my ultrasound scan, which has obviously been a massive relief. But being left without an answer has been worse in some ways.

My doctors never gave me any impression that anything other than PCOS could cause my periods to stop. I didn't have any other symptoms, no visible cysts, back then at least. If celiac disease can cause fertility problems, do doctors not know about it?

mhb, and anyone else, what other possibilities did your docs look into when you had your original problems?

Your situation sounds a lot like mine. My period returned immediately after stopping gluten. Well, not immediately, but within the first month, and has been regular, give or take two or three days, six times since then. I am still sort of in shock that it was gluten all these years. I also had no visible cysts. But I have had a lot of acne which I have determined is caused in me by dairy. Since going off dairy my skin is silky smooth even where it never had acne but never felt like this. A couple of the doctors wanted to test me for benign adrenal hyperplasia. I think that testing is more extensive, and after reading about that disorder, I just went with my gut feeling that that was not my issue and told them I did not want to look into that. Many doctors, even who specialize in women's health care, do not yet understand that celiac, or gluten sensitivity, can be the cause of infertility for some women. Apparently in Europe -- at least some countries there if not all -- and in South America, women with unexplained infertility will be tested for celiac. I had to tell my doctor here in Madison, Wisconsin about the connection and she was very interested. She said that they do test all women with osteoporosis for celiac at the UW clinic. it is not clear to me whether one has to have celiac if pollutant causes the infertility; i.e., can non-celiac gluten sensitivity cause infertility? I don't get the feeling anyone knows that at this point in time.

How long have you been off gluten? I have read that when gluten is the cause of infertility, women can usually conceive a year after going off gluten if not before. It should return your system to normal if that's the issue, but I suppose we're all different and there is so much we all have to learn about this.

[mhb]

Oh heck.

I live in Britain, and our doctors are really reluctant to send you for test or do anything that costs money. Do you think I should push for something like that? I don't even know if it would be available. I do wish I'd bothered the doctors more along the way. I always felt like I was a hypochondriac. It was like groundhog day every time I went in regarding my periods. I tried different doctors, but they all said the same thing. Nobody offered any other possible avenues of research. I felt guilty even in insisting upon the ultrasound, specially since it came back all clear.

See this page, Open Original Shared Link, for more about premature ovarian failure. I had never heard of this until the post on this thread so I had to do a little searching. I don't get the feeling that is what I have. It sounds like something where you do fine for a while but your follicles dope out on you at a very early age (<40 instead of regular menopause). I have had the irregular periods since day one when I started my period at age 12 or 13. You'll see at this link that even if you have premature ovarian failure it sounds like you can conceive with fertility treatments. Celiac is listed as a separate cause from POF, but maybe a connection between them is just not well established.

[Bell]

I do remember that my FSH levels were normal (over a year ago, though), which suggests against premature ovarian failure. I have made an appointment with my doctor again, and will mention all this. I'll tell him I want to get pregnant right away, and hope this gets things moving.

Thanks for the research - it scares me to death though. I have been off work today, and have been feeling really agitated. Rearranged all my furniture, despite feeling not all well over the last few days. I always do that when I'm feeling worried!

[Bell]

I think we lost a few posts here. I know I wrote to say I'd seen my GP who claimed to have never heard of the connection between celiac and fertility. Hrumphh. Interesting since I'd told him myself a few weeks earlier when I first came in after the blood test.

He has promised to ask other experts for me and get back if it seems necessary, which does feel like a brush off if I'm perfectly honest. I reminded him before leaving, and he looked momentarily blank, as though he'd already forgotten. He also told me I'd only need to eat gluten for a few weeks before the biopsy to get accurate results, which I know is probably not quite accurate.

I am getting a little bit paranoid perhaps, but feel like I'm ultimately the one who will pay the price for any mistakes at this point!

When I checked the forum, someone had replied to me but due to the system being down I couldn't read it, and it seems to have permanently vanished. Please try again!

[fig girl]

Hi,

I was diagnosed with Premature Ovarian Failure at age 39 although i had symptoms beginning at about age 36 but didn't know what it was. After having regular periods all of my life i started skipping periods and only having them about every 3 months. I had all the symptoms of menopause (hot flashes, night sweats, joint pain, etc.) and seen a Reproductive Endocrinologist and was diagnosed with POF and my FSH was really high. My Dr. had tested my hormones before referring me to a Reprod. End. and my FSH was high and my estrogen was low. He did a bone density scan and i had osteopenia.

Later that year (2004) i attended the POF study at the National Institutes of Health and no known cause of POF was found. I was diagnosed as gluten sensitive Jan. 08 after having stomach pain, gas bloating, joint pain, brain fog, etc. My blood test for celiac came out negative but i do have the DQ8 gene and felt so much better after being on the gluten free diet. After my gluten sensitive diagnosis I asked my Dr. if i should contact NIH and let them know and she thought i should - i sent them an email but i think it was an old address and i didn't hear from them but i will try to call them and let them know. I initially felt better after going gluten free but developed other food intolerances so i've been preoccupied with trying to figure that out (the SCDiet has helped me a great deal so i think i'm on the right track).

When i first went to my Dr. with gastro problems, joint pain, fatigue, etc. she said with my Mom's history (had stomach problems for years and developed colon and stomach cancer) and with my POF diagnosis and current symptoms she pretty much immediately knew to test me for celiac (she's a wonderful Dr. - my GI Dr. just kept writing a prescription for Nexium). She said she thinks my POF was probably caused by gluten sensitivity (i often think i have celiac with a false negative blood test, i've decided not to have a biopsy done).

Sorry, didn't meant to ramble but hope this helps some. I'm glad mhb., your periods have come back after going gluten free and bell, i hope yours does also. That's great your FSH is normal. You guys are fortunate to have found this out at a young age and can hopefuly get back to normal after being gluten free. I'm 44 now and i hope my periods will come back to normal but with me being in my 40's i don't know and i think i've been gluten sensitive (possibly celiac) for a very long time. I'm currently on hormones but after the holidays i'm going to slowly stop taking them and see how i feel....i hope i'll feel ok without them. I've been wanting to research more about the POF/celiac connection but just haven't had the time but hopefully will soon and will contact NIH and see what they say.

Hope you guys have a safe and nice Thanksgiving!

[doro]

Yesterday I took a food intolerance test. And I am sure that I am gluten sensitive. I have premature ovarian failure, diagnosed 10 years ago. I am now 33, having also some gluten-intolerance health issues, like high level of cholesterol, not able to be treated since 7 years, I have artritis and high crp level, although the clinic results dont approve Rheumatoid Artritis. I am sensitive to sun light, having egzama on my face for the last 7 years, not able to lose weight like my fellows, cronic constipation etc. No one, all these doctors I have visited regularly, have ever mentioned about what gluten can cause. I just made up my mind and now see that this can be the cause of my health problems.

I am waiting to have the results. And I hope that this is not late for me. I never had regular periods, ans since ten years I am having my periods with the help of drugs.

If I succeed I will share my story with you and with as many people I can.

Hope that sharing our stories can help others searching for a solution. I am searching for ten years, and I hope that this time I have found it...

Lots of love and patience to all of you...

[ravenwoodglass]

Yesterday I took a food intolerance test. And I am sure that I am gluten sensitive. I have premature ovarian failure, diagnosed 10 years ago. I am now 33, having also some gluten-intolerance health issues, like high level of cholesterol, not able to be treated since 7 years, I have artritis and high crp level, although the clinic results dont approve Rheumatoid Artritis. I am sensitive to sun light, having egzama on my face for the last 7 years, not able to lose weight like my fellows, cronic constipation etc. No one, all these doctors I have visited regularly, have ever mentioned about what gluten can cause. I just made up my mind and now see that this can be the cause of my health problems.

I am waiting to have the results. And I hope that this is not late for me. I never had regular periods, ans since ten years I am having my periods with the help of drugs.

If I succeed I will share my story with you and with as many people I can.

Hope that sharing our stories can help others searching for a solution. I am searching for ten years, and I hope that this time I have found it...

Lots of love and patience to all of you...

Hopefully the diet will clear things up for you. Since you are still having periods, although with the help of meds, you may have a good chance of things normalizing. You may even find your arthritis goes into remission. That was the most surprising thing for me when I went on the diet as I only expected relief from my gut symptoms. Unfortunately for me it was too late for my reproductive system to return to normal but my OB/GYN said that it is not unusual for celiac to throw us into a premature menapause and that at times the diet will reverse it. Keeping my fingers crossed for you that the diet will help with that.