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  • Michelle Melin-Rogovin
    Michelle Melin-Rogovin

    Fertility and Pregnancy in Women with Celiac Disease by Michelle Melin-Rogovin

    Reviewed and edited by a celiac disease expert.

    This article originally appeared in the Autumn 2002 edition of Celiac.coms Scott-Free newsletter.

    At the University of Chicago Celiac Disease Program, women with celiac disease who have recently become pregnant often contact us. Remarkably, the questions we receive from these women seldom stray from one issue, that is, whether or not to maintain a gluten-free diet while pregnant. Most women mistakenly believe that the gluten-free diet will deprive their developing fetus with the nutrients it needs, and hurt the growing baby. In fact, for a pregnant woman with celiac disease, remaining ON the gluten-free diet is the best and only option for the health of mother and child. The gluten-free diet provides pregnant women and their babies with all of the nutrients they need to grow and be healthy.

    Fortunately, for all concerned, there have been excellent research studies on fertility, pregnancy and celiac disease conducted by top-notch investigators around the world. While this important research has mainly focused on women, it is important to note that researchers have established (since the 1950s) that men also suffer from infertility due to undiagnosed celiac disease.

    Celiac Disease and Fertility
    In research studies to date, the incidence of celiac disease in women with unexplained infertility has been estimated at four to eight percent. While a number of studies have demonstrated that unexplained infertility can be successfully treated with the gluten-free diet, others have shown that there are factors other than malabsorption of nutrients that result in infertility, delayed menarche (the start of the menstrual cycle) and early menopause.

    In two large case control studies, researchers examined the incidence of delayed menarche, amenorrhea (cessation of the menstrual cycle for short periods of time), and early menopause. Both studies enrolled women with celiac disease who were following the gluten-free diet or eating a gluten-containing diet.

    They found that women who were not on the gluten-free diet started their menstrual cycle up to a year and a half later than women with celiac disease who were following the diet. In addition, researchers found that up to 39% of women not on the diet experienced periods of amenorrhea, compared to only nine percent of women who were on the gluten-free diet. As you would expect, women with celiac disease who were not on the gluten-free diet were found to enter menopause four to five years earlier than women with celiac disease who were on the diet.

    Researchers who have studied women with infertility have found that they test positive for celiac disease-related antibodies at a rate that is ten-fold higher than the normal population. They have also demonstrated that women with infertility who are diagnosed with celiac disease do not always exhibit iron, B-12, or folate deficiencies, which points to other celiac disease-related explanations for the development of their infertility.

    Celiac Disease and Pregnancy
    Researchers have also studied the effect of the gluten-free diet in pregnant women with celiac disease, in order to determine any impact on the developing fetus and the pregnancy outcome. In a study of 25 patients and 60 pregnancies researchers found that 21% of women who were not on the gluten-free diet experienced pregnancy loss, and 16% of women experienced fetal growth restriction. Researchers also remarked, however, that successful pregnancies occurred before and after diagnoses for many women in the study.

    In a large Danish study with 211 infants and 127 mothers with celiac disease, researchers found that the mean birth weight of children born to mothers on a gluten-containing diet was significantly lower than babies born to mothers without celiac disease. Interestingly, this same study determined that women on the gluten-free diet gave birth to children weighing more than those born to mothers without celiac disease!

    In a case-control study that looked at the effect of the gluten-free diet on pregnancy and lactation, investigators learned that women with celiac disease who were not on the gluten-free diet experienced pregnancy loss at a rate of 17.8%, compared to 2.4% of women with celiac disease who were on the gluten-free diet. These researchers found that there was no difference in the occurrence of pregnancy and fertility problems in women with sub-clinical (positive blood test, negative biopsy) or clinical disease (positive blood test, positive biopsy).

    Finally, in a group of women with celiac disease who had been pregnant more than once, researchers looked at the effect of the gluten-free diet on their future pregnancies. They concluded that the institution of the gluten-free diet upon diagnosis caused a relative 35.6% drop in pregnancy loss, 29.4% drop in low-birth weight babies and an increase of two and a half months of breastfeeding.

    While the malabsorption of nutrients is not the only cause of fertility and pregnancy-related problems for women with celiac disease, the gluten-free diet is essential to improving the health of women and their babies.


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    I was and still am undiagnosed. (Docs tell me its in my head!) However my 2 yr old is allergic to wheat, barley, rye, etc. We both went on a gluten free diet while nursing and my asthma has cleared up along with my various GI problems. He had an intrauterine growth restriction. I am now expecting baby #3 and I have had no issues with asthma nor pregnancy thanks to the gluten free diet. Thank God for gluten free.

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    It is 2:30 AM and I am up researching being pregnant as a Celiac. My husband and I are terrified of losing a baby or having birth defects. My sister, who is also Celiac, had 2 babies die after carrying them for about seven months. We have both recently found out we are Celiacs and are maintaining healthy gluten-free diets. This article gave me hope that I will be able to conceive without any problems. However, we still haven't conceived after 10 months and that scares me.

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    I also had problems conceiving before my celiac diagnosis. I got pregnant after 6 years of trying, while on Weight Watchers. The doctors told me it was just because of the weight loss, but I have kept the weight off but not been able to get pregnant again. When I started thinking about it, while on WW I was eating mostly gluten free to save points (no bread, cookies, pancakes, etc...) So I have been completely gluten free for 2 1/2 weeks now. Keeping fingers crossed that I will get pregnant again!

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    I found out I was a celiac AFTER I had my first child. She came out a whopping 10lbs! now I'm pregnant again and I'm going gluten free. (my first child unfortunately has been diagnosed with autism. :( BUT! this time I know that I do have problems with wheat and have swore completely off! Whatever I have to do to keep my kids safe and healthy I will do. I just hope THIS kid isn't bigger than my last one!.

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    I found out I was a celiac AFTER I had my first child. She came out a whopping 10lbs! now I'm pregnant again and I'm going gluten free. (my first child unfortunately has been diagnosed with autism. :( BUT! this time I know that I do have problems with wheat and have swore completely off! Whatever I have to do to keep my kids safe and healthy I will do. I just hope THIS kid isn't bigger than my last one!.

    Hi Amy, I wonder what your symptoms of celiac were after having your first child. Did you have joint pains/stiffness/weight loss. My sister in law had these symptoms but was diagnosed with Rheumatoid Arthritis. She now thinks the condition is food related as when she eliminates certain foods she is so much better. She has some symptoms that could be celiac - numbness in fingers and MORE weight loss. All these problems can be one of several diseases can't they?

     

    I am sorry that your first baby has been diagnosed with Autism but again I have seen many stories of vast improvement by diet.

     

    I am a believer that much of what we eat is making us ill! Of course, treating the vast majority of patients by diet does not make money for drug companies or the NHS!

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    It is 2:30 AM and I am up researching being pregnant as a Celiac. My husband and I are terrified of losing a baby or having birth defects. My sister, who is also Celiac, had 2 babies die after carrying them for about seven months. We have both recently found out we are Celiacs and are maintaining healthy gluten-free diets. This article gave me hope that I will be able to conceive without any problems. However, we still haven't conceived after 10 months and that scares me.

    I am wondering how you tries have come along. I have been gluten-free since August, just now starting to try, have many fears--my husband is worried.

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    I have a lot of family diagnosed with celiac. (one being my sister) I've heard it is hereditary and I have many symptoms so I went on a gluten free diet while waiting to get tested... When I was finally did get to see a specialist he tested (blood test) on my first appointment without any warning. I had been gluten free for about a year and because of this it came back negative for gluten intolerance. He claims it is impossible to be completely gluten free so he diagnosed me with irritable bowel with colitis and I have been positively tested with a wheat allergy.

     

    Anyway I took his advise and went back to gluten, and just increased my fiber intake. Well my cycle is all messed up and I have been unable to get pregnant so far so I'm going gluten free again. Hope it works!! I know I feel much better off gluten I don't need a test to tell me that!

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    I was surprised to hear that women with celiac would consider not following a gluten free diet while pregnant. I was diagnosed with celiac as very small child and have strong reactions. For me there is no option of whether or not to follow a gluten free diet.

    Same here, I've been gluten free going on 8 years. I have no idea why people think "Maybe THIS time I won't get sick?"

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    Wow, I just found out I have celiac disease and started a gluten-free diet a week ago. I have been TTC for almost 5 years with 3 miscarriages. And feel so hopeful that this may just be the answer to my infertility.

    Hi I have just been diagnosed with coeliac disease after a year of trying to conceive. I am curious to know how you have got on a year later.

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    Have been gluten-free for five years and thinking of starting a family in a year. Feel hopeful that everything should be normal if I continue to take care of myself in the best way I can. Concerned with increasing folic acid in my diet. How much and how. Any suggestions?

    There are gluten-free folic acid supplements made now.

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    Hey I''m 17, 10 weeks pregnant with twins and I'm a celiac. I read this article and started to worry about my babies. I''m scared that I might have a miscarriage.

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    I have a lot of family diagnosed with celiac. (one being my sister) I've heard it is hereditary and I have many symptoms so I went on a gluten free diet while waiting to get tested... When I was finally did get to see a specialist he tested (blood test) on my first appointment without any warning. I had been gluten free for about a year and because of this it came back negative for gluten intolerance. He claims it is impossible to be completely gluten free so he diagnosed me with irritable bowel with colitis and I have been positively tested with a wheat allergy.

     

    Anyway I took his advise and went back to gluten, and just increased my fiber intake. Well my cycle is all messed up and I have been unable to get pregnant so far so I'm going gluten free again. Hope it works!! I know I feel much better off gluten I don't need a test to tell me that!

    Hi i was just reading your post from November, when you were tested for celiac disease, if you were on a gluten-free diet then it would not have showed up on your test results. If you feel that being on a gluten-free diet is best for you, then I would stick to it.

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  • About Me

    Michelle Melin-Rogovin is the program director of the University of Chicago Celiac Disease Program and a proud representative on the American Celiac Task Force. Ms. Melin-Rogovin has 12 years of experience in health care and patient advocacy, working with children and adults who face a variety of chronic medical conditions.

    Visit the University of Chicago Celiac Disease Program's site at: www.CeliacDisease.net

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