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Let’s Talk about Celiac Disease and Infertility

One of my favorite Celiac Disease-related pages on Facebook is that of the University of Chicago’s Celiac Disease Center. One of the first “tidbits” that I read on this page, after discovering it last fall, was the following statement: “Women who have experienced persistent miscarriages or infertility without a known medical cause should be tested for celiac disease.” I had no idea that there was such a strong association between Celiac Disease and infertility until I read this sentence.

I have encountered tons of women, both professionally and personally, who have struggled to get pregnant and/or carry a pregnancy to term. Recent estimates have shown that up to 10.9% of women of childbearing age (15-44) in the U.S. seek treatment for infertility in any given year. I wrote a post about the effects of Celiac Disease on pregnancy in January 2013, and since then have read quite a bit more about topic. Here are some things which I have learned about Celiac Disease and infertility:

-Studies published within the last two years have shown that between 6 and 10% of women with unexplained infertility have (undiagnosed) Celiac Disease. Previously, it was believed that the numbers were much lower, around 2-4%.

-Many women with Celiac-related infertility do have a prior history of irritable bowel syndrome or other GI complaints, but they do not necessarily have these symptoms while undergoing treatment for infertility.  It is well known that signs and symptoms of Celiac Disease can appear and then disappear for years (and even decades) before diagnosis.

-It is believed that Celiac impacts fertility due to a combination of malnutrition (nutrient deficiencies interfere with sex hormone function) and the formation of small placental blood clots (thromboses) due to Vitamin B12 deficiency. It has also been shown that anti-TTG antibodies do bind to placental tissues and can interfere with placental formation and function.

-If a woman has infertility due to Celiac Disease, fertility should resume between 3 to 9 months after going gluten free.

-Many researchers conclude that all women with unexplained infertility should be screened for Celiac Disease. Based on discussions with several people, this does not seem to be happening in all parts of the U.S.

The average cost for one cycle of IVF is $12,400. Many women go through multiple rounds of IVF before conceiving. Surrogacy can cost up to $100,000. If the research studies are correct, many women who are paying for these expensive treatments may actually have undiagnosed Celiac Disease. We need to continue to inform and discuss this with our families, friends, and neighbors as so many are potentially impacted.

General infertility statistics are found on the CDC site: http://www.cdc.gov/nchs/fastats/fertile.htm.

Other references which may be of interest:

1. Undiagnosed celiac disease in women with infertility. Machado AP, Silva LR, Zausner B, Oliveira Jde A, Diniz DR, de Oliveira J. J Reprod Med. 2013 Jan-Feb; 58(1-2):61-6

2. Increased prevalence of celiac disease in patients with unexplained infertility in the United States. Choi JM, Lebwohl B, Wang J, Lee SK, Murray JA, Sauer MV, Green PH. J Reprod Med. 2011 May-Jun; 56(5-6):199-203.

3. Immediate effect on fertility of a gluten-free diet in women with untreated coeliac disease. Raffaella Nenna, Maurizio Mennini, Laura Petrarca, Margherita Bonamico. Gut 2011;60:1023-1024.

4. Anti-tissue transglutaminase antibodies from celiac patients are responsible for trophoblast damage via apoptosis in vitro. Di Simone N, Silano M, Castellani R, Di Nicuolo F, D’Alessio MC, Franceschi F, Tritarelli A, Leone AM, Tersigni C, Gasbarrini G, Silveri NG, Caruso A, Gasbarrini A. Am J Gastroenterol. 2010 Oct; 105(10):2254-61.

5. Infertility Treatment in a Population-Based Sample: 2004–2005. Sara E. Simonsen, Laurie Baksh, Joseph B. Stanford. Maternal and Child Health Journal. May 2012, Volume 16, Issue 4, pp 877-886.

18 thoughts on “Let’s Talk about Celiac Disease and Infertility

  1. Diana

    I had 30 years of undiagnosed celiac. My major symptoms were extreme fatigue, foggy mind, and bloating. During those years I had one misscarriage, 5 healthy children, and atleast 12 years of infertility. We greatly desired more children. We discovered I had celiac disease nearly 1 year ago. My mind is waking up and getting clearer.

    1. Jess Post author

      Hi Diana,
      Thanks for checking out my blog. I am so happy to hear that you are feeling better after being unwell for so long. My heart hurts when I think about all of the women who have had difficulty conceiving from undiagnosed celiac disease. There are so many of us who seem to have had similar symptoms for ages and just got diagnosed in the last few years. I found it really difficult to be a good mom when I felt so unwell most of the time. When I get gluten cross contamination I get horrible brain fog and also other neuro symptoms (numbness and tingling, a lot like MS), in addition to digestive symptoms and arthritis.
      Anyway, looking forward to getting to know you better through here and some of the forums!
      All the best!

        1. Jess Post author

          I think that one of the most challenging parts of all of this is having the outward appearance of looking “normal” while simultaneously having so many symptoms going on….

  2. Meghan

    It is so helpful to find blogs like yours out there! While pregnant for the fourth time (I had one miscarriage) I began to have serious issues with pain from eating. Prior to this, both my parents had had their gallbladders removed, mom for stones and dad for biliary dyskinesia. I was on vacation at the time so we just tried to stick to a gallbladder diet until I was able to see my midwife. This became vegan, low fat, and low sodium. This was while only 3 months pregnant so we hoped to just ease through the pregnancy and seek gb removal after. I had my sweet baby in March of 2012 (9lbs despite me only gaining a grand total of 15 and being at my ideal BMI at the start of the pregnancy) and gb tests were done showing it as non-functional. My surgeon is AWESOME! He encouraged me to continue to try diet changes and is a big proponent for a healthy, natural lifestyle. At 4 months post-partum it was painfully obvious the gb had to go so it did in July 2012. The Dr was very encouraged by the fact that the thing was obviously not functioning, my intestinal biopsy showed no damage and he felt we might have the solution to my pain. It did not work and my pain and symptoms were worse. In October 2012 I decided to try gluten free as gluten is known to cause problems for those with biliary dyskinesia. After continuing to see no improvement I was lost, until that day mom and I saw Jennifer Esposito’s interview on Fox News. I had already intended to revisit my surgeon and possibly see a gastroenterologist. So I called my surgeon, who is my only medical advisor since my midwife moved, and requested he order a test for Celiac. To be honest he didn’t know what to order or how to read it so he researched and ordered an anti-tissue transglutaminase IgA test. He explained that a negative would be less than 4 units/mL, weak positive was 4-10, I scored a 12 while on what I thought was a gluten free (except receiving Communion at Mass as I am Catholic). This was all Monday, March 4th 2013. Now I am feeling lost. We live in rural Alaska (over 100 miles to the nearest store with a gluten free, organic, or health food section) and pickings are pretty slim. I don’t even know where I am getting gluten from, except eating things that may have been made in the same facility as wheat or cross contamination from making my family’s food. My surgeon has referred me to a naturopathic dr as we both are of the mindset that western medicine holds no answers for me. There is very strong evidence that I am also suffering from biliary dyskinesia (also called sphincter of oddi where the sphincter spasms and can not regulate the bile) so I am trying to maintain low-fat, vegan and low sodium besides the gluten free which takes out a lot of coconut oils and products. I am still learning but truly appreciate having your website to help me make my way!
    Thank you!
    Meghan Orona

    1. Jess Post author

      Hi Meghan,
      Thank you so much for sharing your story and congratulations on your baby turning 1! My youngest was also born in March 2012 and the year has flown by. If I am understanding you correctly, you have both biliary dyskinesia, and celiac disease (or non celiac gluten sensitivity). Have you noticed an improvement in your biliary colic since going GF and/or does gluten exposure seem to bring on the biliary symptoms? There is a definite link between Celiac Disease and gallbladder/biliary issues.
      More questions: Are you taking the “low gluten” communion host, or a regular one? Is your entire house gluten free, or just you? Consuming regular wheat-based hosts and/or getting cross contamination from a shared kitchen sound like the most likely ways that you’d be getting continued gluten exposure (and definitely enough for your TTG antibodies to still be raised). I continued to get sick after going GF due to crumbs from all of my little ones. Another thing that is sometimes overlooked is that gluten can be a filler in medications, and/or pills can be contaminated during processing. I had this happen to me with a generic Synthroid last year (my pharmacy ordered a new generic for me from a different company than the one I was previously on and I started to get sick from it).
      When I first went gluten free I ate a lot of processed foods to substitute for wheat containing foods, and I’ve learned that most of the time it is just not worth it to buy them (expensive, most don’t taste that good, and a lot are unhealthy). My whole family is now GF and we eat tons of vegetables and fruits, lean meats, eggs, nuts, beans, and a little dairy. Our starches are mainly rice and potatoes. I bought a bread machine and although I am very “grain light,” I make bread for the rest of the family. My kids eat yogurt, bananas, eggs, and/or GF oatmeal in the morning. Snacks are usually fresh or fried fruit, homemade cookies or muffins made with GF flour (have been using a lot of almond flour), baby carrots and other veggies, cheese sticks, and popcorn.
      I was diagnosed just over 3 years ago, and things have gotten a ton easier with time, but there is a huge learning curve. I hope that you are able to find a good naturopath who you can form a relationship with!
      I have put some helpful internet resources on the main page of my blog. Both the University of Chicago site and National Foundation for Celiac Awareness site have great information. Another great webpage is http://www.celiaccorner.com.
      Good luck to you and thanks for reading. Feel free to email at any point with questions and/or ideas for blog posts!
      Jess

  3. Meghan

    Thank you Jess! I had to stop taking Communion hosts completely because we have not worked all the ins and outs of the low gluten host yet. My family is not GF, just me and we are trying to avoid cross-contamination but I fear I am still getting it. We honestly have no idea the order of the illnesses, whether they are inter-related or really what has happened. I, personally, believe I got the biliary dyskinesia, it just seemed to fit my early symptoms, and then the subsequent pregnancy and surgery caused the full blown celiac. At this point the only way to know for sure if it is biliary dyskinesia as well is to have a painful test with radiation and I don’t want to do that since it will be expensive, I would have to stop bf my son, and the only solution is dietary changes anyway. We are trying to change our kitchen to GF, it is just a slow process due to money. We have to replace a large butcher block counter and our stove (it is on it’s way out anyway so what better reason to replace :) )
    I do believe the CD leads to biliary symptoms, as does eating anything with very much fat, sodium or animal products. That, unfortunately, takes out a lot of the coconut products so many recipes use to replace butter. I, thankfully, don’t take any medication (other than multivitamins I have confirmed are gf), but we are moving farther and farther away from any packaged foods. We have never eaten them much anyway but you are right about taste/texture/ and contents. What makes that difficult (and I don’t mean to sound whiny) is that we live 100 miles from the nearest city in rural Alaska so trips to Fairbanks take all day and there is no “safe” place to eat. I am still in pain every day, we have not yet identified why but we are working at it.
    Thank you for all the info!!!
    Meghan

  4. Meghan

    Something I can’t seem to find anywhere is how crazy so I need to go Our kitchen is custom and original to our home (60s) with hand-built wood drawers. Is there anything I can do to get the gluten out :( Right now my flatware drawer is lined with tin foil just to be safe, and kept completely separate from the rest of the family’s flatware.

    1. Jess Post author

      Hi Meghan,
      It really sounds like you have been as thorough as you possibly can with removing gluten. I just used a crevice attachment from my vacuum to suck up all of the crumbs from my kitchen drawers and then wiped them with disinfecting wipes when I did the final step of removing gluten from the house. It’s been a while, but back when we did have a “shared” kitchen, I had my own cutting board(s), pasta strainer and pot, utensils, and baking dishes and cookie sheets. I toasted everything on tin foil in our toaster oven. I had all of my own condiments as well. I washed my kitchen items in the dishwasher the best I could, and then when I did hand wash used a separate sponge/rag….one of the biggest sources of cross contamination in a shared kitchen is actually from the kitchen sponges.
      I hate to hear that you are still in pain everyday. Have you tried an elimination diet? I have communicated with some who have eaten just a few basic foods for a week or so, foods that they were sure did not cause them to have pain like lettuce and chicken (I know that this wouldn’t work for you since you’re a vegan), and then slowly added items back in. I never had to be as strict as this, but I did keep a detailed food journal for months which helped me to figure out my other intolerances.
      Please keep me updated on your progress!
      Jess

  5. Pingback: Let's Talk about Celiac Disease and Infertility | The Patient Celiac - Celiac Disease Prevention

  6. Meghan

    Hi Jess-
    I keep saying I will go on a raw diet (except cooking dried beans and quinoa ;) ) and then my hubby makes a delicious, gf, cooked food LOL. I need him to stop being so good!!!! I think the pain is from cross-contamination from making my kiddos food or our trips to Fairbanks. We have decided to get gluten completely out of the house until I am under control. Thank you for responding and offering your insight!!!! It means a lot to me!
    Meghan

  7. Meghan

    PS- Some of the pain from this past week is likely due to my son’s birthday cake. We were extremely careful to make it gf but it was pretty high in fat. But it tasted so good!!!! LOL

  8. Kristin

    I struggle with infertility and have experienced a miscarriage as well; however, I was diagnosed with my Celiac Disease 8 years before I ever tried to become pregnant. So, unfortunately – in my case it is unrelated. I just wanted to say that I applaud your efforts to make this issue known though. I have heard story after story of women who have infertility and/or miscarriages who subsequently learn they have Celiac who go on to have successful pregnancies. Just wish it was the case for me.

    1. Jess Post author

      Hi Kristin,
      I am so sorry to hear that you have been struggling with infertility. I have had two miscarriages that I know of, one prior to diagnosis one about 15 months after I was diagnosed. The 2nd one happened within days of a very severe episode of gluten exposure. I will never know for sure if it was related to the gluten exposure or not, but I had a healthy fetus on a 6 week US, then lost the pregnancy about 5 weeks later.
      When I was writing the article, although the “experts” state that fertility does return, I could not actually find any hard core research to back up that belief. It seems like so many of us may have co-existent autoimmune processes going on that may well be playing a role as well.
      Anyway, thanks for reading. I wish you the best!
      Jess

  9. Amanda B

    I am looking into becoming a surrogate for a celiac friend. We can’t find information on what kind of implications her celiac’s will have on the baby in my body. Will I have to be gf? Am I more likely to lose the baby because it is her egg? If you can point us to any authority on such issues, I’d be very grateful. I live outside Philadelphia and she is in Austin. Thanks so much!

    1. Jess Post author

      Hi Amanda,
      It is wonderful that you are considering doing this for your friend.
      I cannot think of any reason that your friend’s celiac diagnosis would be a contraindication for surrogacy. You would definitely not need to be GF and the chances are 9/10 that the baby would not have it (which are really good odds). Although babies may be born with a genetic predisposition to celiac disease, they do not develop it until some time after birth, and again, the risk of the baby ever developing it during lifetime is 1 in 10.
      Mothers with celiac disease who are not GF do have higher risks of pregnancy complications, but the risks are from the mother, not the fetus.
      I hope this helps.
      Best wishes to both of you.
      Jess

  10. Amanda B

    Thank you so much for your reply! This is the first definitive answer we’ve gotten. Most doctors and websites say “maybe,” and that is about it. :) Thanks again!!

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