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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 think the idea of grinding your own at home stems from the thought that flavored coffees might be ground on the same machines.  The grinders in the grocery are not cleaned between uses.  However, I have not found a flavored coffee bean that had gluten, so it's probably not a real concern.  For coffee that comes from a factory ground, I wouldn't worry at all.   Machines would be cleaned between flavors and nothing but coffee could be made on the machines or even in the same building ( everything made would taste/ smell like coffee). if you still have doubts - I went to the International Celiac Disease Symposium a few years back.  This is held every few years in different countries for medical professionals that study and treat Celiac.  They present research, etc.  All food served was gluten-free.  We drank a lot of plain, already ground, coffee!  A lot!   Coffee is not on any lists as a gluten containing food.  Talking legitimate organizations - not some blogger or pseudo- science website.   After all this, if you still doubt that coffee is gluten free...... Then don't drink it!  It leaves more for me!    
    • To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps".  You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others  wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
    • Now that my initial rage has calmed a tad.... your daughter has to fulfill 4 out of 5 of the diagnostic criteria. Second opinion can do a gene test. If positive, then she will have4 out of 5 of the dx criteria to dx without a positive biopsy. See: http://www.gastro.org/news_items/a-biopsy-should-not-be-required-to-make-the-diagnosis which says in part: The presence of signs and symptoms compatible with celiac disease. Positive serology screening (high serum levels of anti-TTG and/or EMA). Presence of the predisposing genes HLA-DQ2 and/or –DQ8. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.   Also see: http://www.tenderfoodie.com/blog/2014/5/1/dr-fasano-on-new-gut-autoimmune-research-autism-clearing-up.html She can get a dx after her symptoms resolve on a gluten-free diet!
    • OMG!!!! The doc wants her to get sicker & sicker & do further damage so he can diagnose her? Don't do me any favors doc!!! I'm so spitting med right now I can't even speak! Find a new doc, take the records & get a second opinion. Maybe the next doc will have a freaking brain & dx your daughter. She should be dx'd! This is absurd in the extreme. The very least that should happen is the doc give her a dx now & then in a year or 2 have her do a gluten challenge & do a biopsy all over again but seriously, that would be just as cruel as what he's doing now. He's an ASS!
    • Celiac disease may lead to a host of other inflammatory, gluten-related ... Fortunately, Diet Doc offers gluten-free diet plans which are customized to ... View the full article
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