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Infertility & Celiac Disease (After Diagnosis)
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I am new to this forum and I have been searching the internet for some answers; I was hoping maybe somebody on here can help me. I know there is a link between undiagnosed Celiac Disease and infertility (and that most issues are resolved after assuming a gluten-free diet) ....but I am wondering if anyone here continued to have issues related to infertility after diagnosis? I was diagnosed with Celiac 10 years ago and have been on a strict gluten-free diet ever since. I only started TTC 2.5 years ago and have only been successful once - which led to a miscarriage at 8 weeks. That was 1.5 years ago. I watch my cycles carefully and have tried two rounds of Clomid. Still nothing. So, again - I was just wondering if anyone else has had problems TTC after a Celiac diagnosis? I appreciate any input. Thank you!

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I wish I could say I had followed your path. I had no idea that Celiac and Infertility were related at the time I was TTC. I'm writing you to let you know a nice outcome from infertility...

We have fraternal girl twins concieved through IVF/ICSI and PGD under Dr. Schoolcraft's guidance at the Colorado Center for Reproductive Medicine. Dr. Schoolcraft was amazing.

Our twins were diagnosed with Celiac in March, at 5.5 years old. Only through my girls' experiences did I start to wonder if I have Celiac (and if that was the reason I had fertility issues). My kiddos may be helping me get healthier!

All that said, I know our pediatric GI, Dr. Michelle Pietzak (Children's Hospital LA) is aware and empathetic about the link between Celiac and Infertility. She is also a researcher and teaches at USC. I think she is considering doing research on the topic. Her number at CHLA is (323) 361-2181.

Sending you warm wishes on your path to motherhood!

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Thank you for your post - I appreciate all the information that you provided. It sounds like it is extremely common that many women experience infertility issues prior to the Celiac diagnosis; however, I have yet to find any information regarding whether or not any Celiacs continue to have issues post diagnosis and post gluten-free diet transition. Apparently, most are 'cured' of the infertility by starting the gluten-free diet... but, there isn't much research about any with lingering issues. As luck would have it, I never tried to get pregnant before - so I have no idea if I have always had these issues. Anyway, I am so happy to hear that you have been blessed with twins and your infertility battles were successful!!!

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Thank you for your post - I appreciate all the information that you provided. It sounds like it is extremely common that many women experience infertility issues prior to the Celiac diagnosis; however, I have yet to find any information regarding whether or not any Celiacs continue to have issues post diagnosis and post gluten-free diet transition. Apparently, most are 'cured' of the infertility by starting the gluten-free diet... but, there isn't much research about any with lingering issues. As luck would have it, I never tried to get pregnant before - so I have no idea if I have always had these issues. Anyway, I am so happy to hear that you have been blessed with twins and your infertility battles were successful!!!

I started having fertility issues 12 years ago. Only recently did I discover that I am gluten intolerant/celiac (self diagnosed by elimination) and read that fertility can be a problem. Although we did have 4 round of IUI and with the last round I added acupuncture for 5 months and became pregnant. 3 years passed again without being able to get pregnant and I once more started having acupuncture treatments and after about 4 months I became pregnant. Good luck to you!
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Hi, i am new here. I was diagnosed with PCOS in 2001 when i first got married. We immediately started infertility treatments. I was not diagnosed with gluten intolerance until 2009. So my gluten exsposure probably cancelled out the treatments. Ever since 2009, we have not done anything to prevent pregnancy. The PCOS continues for its own obstinate reasons. I had hoped that my body would repair itself after i went Gluten-Free, but apperently not. I am still dealling with this plus depression and fibromyalgia. Btw, what is TTC? I understand the grief of long term infertility. I wish you all the best.

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Hi, i am new here. I was diagnosed with PCOS in 2001 when i first got married. We immediately started infertility treatments. I was not diagnosed with gluten intolerance until 2009. So my gluten exsposure probably cancelled out the treatments. Ever since 2009, we have not done anything to prevent pregnancy. The PCOS continues for its own obstinate reasons. I had hoped that my body would repair itself after i went Gluten-Free, but apperently not. I am still dealling with this plus depression and fibromyalgia. Btw, what is TTC? I understand the grief of long term infertility. I wish you all the best.

Trying To Conceive.

I am wondering if further improving diets would help? such as getting rid of processed food. reducing carbs even further, etc.

and don't forget the second person involved, perhaps some of the issue is his.

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I had recurrent miscarriage and didn't know I had celiac.

I have 2 kids now.

The best tip I had was 'afterwards' for the woman to stay in bed lying back with a couple of pillows to tip hips towards tummy. The man has to go and fix coffee, tea, snacks etc.

Other things were decent diet and relaxation

/meditation.

Once pregnant I avoided cold drinks for a while and kept my tummy warm by wrapping with a scarf.

Who knows if any of this will work for you.

I hope you find a way, and some support

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I was diagnosed PCOS in 2001 as well, like a previous poster. At that point I had no clue that I also had celiac. I tried to conceive for four years before finally having my twins. I was having many, many health problems at the time, ballooning weight, high cholesterol, high blood pressure... and all of this while I was a vegetarian.

After a long consult with my Ob/gyn about my health, I went on Metformin to help my PCOS symptoms, and drastically changed my life. I began eating meat again, and went very low carb/low sugar. Those changes, along with daily excercise, allowed me to lose 50lbs over about 6 months. I became pregnant with my twins with help of Clomid. I remained on the Metformin througout my pregnancy.

I eventually went off the Metformin, and happened to get pregnant on my own twice, both of which resulted in miscarriages. I began to have health struggles again and gained weight, and gave up on having any more children. I went back on the Metformin, and was suprised with a pregnancy. I remained on the Met for the entire pregnancy, and had a healthy son.

So, for me, the Met has been a miracle drug. I am still on it, but am now struggling with celiac symptoms, as I was just diagnosed a few months ago.

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Oops, I forgot to say, when I went low carb/low sugar, I felt better than I ever had in my entire life. I unknowingly was low gluten as well, which probably helped with my health, weight loss and successful pregnancy. At the time, I didn't have a clue that I had celiac.

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Sorry, one more post, lol, I'm a bit of a fertility knowlegde freak, after trying for four years. I learned so much about TTC by reading the book "Taking Charge of Your Fertility by Toni Weschler. (I don't have any vested interest in the book, just sharing.) I did the basal body temperature charting, monitoring cervical changes, all that fun stuff for my first pregnancy, as well as taking Robitussum to thin mucus. Charting helps to pinpoint the perfect time for conception. If you haven't read it, I highly recommend it, for anyone having issues with conceiving. I was not ovulating or menstruating on my own at all, due to the PCOS and undiagnosed celiac. Charting helped me figure it out, and then with the Clomid allowed me to ovulate, we were able to finally conceive.

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I liked Zita West on fertility. She is based in London, so not sure how widely her books are available. She is an expert in combining complimentary and conventional medicine, including nutrition and supplements. I think she advises some of the top fertility clinics here.

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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