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


    Michelle Melin-Rogovin

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


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    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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    Guest Natalie

    Posted

    My second baby was born late at a whopping 9lbs 4 oz! My midwife was a little shocked that my baby was so big! I had been gluten-free for 2 years.

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    We have been trying for a second child for 1 1/2 years now. my doctor is testing me for celiac disease. As a coincidence (or not!) I had been on mostly gluten-free diet when we accidentally conceived our first child...I'd love to hear anyone's experience!

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    We are thrilled to be pregnant after trying for 6 years! I was diagnosed with Celiac sprue in September but started a gluten-free diet in August, knowing it helped. In November we found out I'm pregnant and due in August. I can't tell you how happy I am that I have been diagnosed and that the gluten-free diet has changed my life.

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    We'd been TTC for 4.5 years, I went gluten-free 4 months ago and am now 7 week pregnant! God Bless Gluten Free!

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    Guest Wendy

    Posted

    I was following a very reduced grain diet and became pregnant but stopped and had a miscarriage. This encourages me to try again since we haven't conceived in 4+ years.

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    Guest Elizabeth

    Posted

    I am 8 weeks pregnant with my second. My 1st son had a neural tube defect (mild-I was undiagnosed) and I have been gluten free for about 3 months now. I hope I was Gluten-Free long enough! From what I've read, baby should be fine.

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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?

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    Guest Jeanna

    Posted

    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.

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    This article really hits home. I was just diagnosed with celiac disease, my daughter is 19 months old. She had fetal growth restriction, preterm birth and low birth weight. This article now makes what happened to her make sense. She has some foot issues but should be fine in a couple of years. I will be getting her tested right away. For the next pregnancy I will not be as scared.

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    Guest Alicia Woods

    Posted

    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.

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    Guest C. Huth

    Posted

    I had only been diagnosed with coeliac for 3 months when I fell pregnant. Sadly, I miscarried but after having read this article I know it is possible to have a successful and relatively normal pregnancy if I continue on a gluten-free diet. Our first child had a low birth weight but I didn't know that I had coeliac at the time. She is a perfectly healthy 3 year old, but we have had her tested for coeliac also, just to be sure she is getting the right nutrients. We are just waiting for the results. Hopefully having being diagnosed with coeliac disease and eating the right food will help us succeed in giving our daughter the baby brother or sister she has been begging us for!

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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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    Guest Maps

    Posted

    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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    Guest Dede

    Posted

    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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    Guest Melinda

    Posted

    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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    Guest Dutchess

    Posted

    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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    Guest Kristen

    Posted

    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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    Guest ash

    Posted

    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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    I am 56, went through menopause in mid thirties. Only had one son, he was preterm, low birth weight, full of allergies, slow grower. He was diagnosed at 2 with celiac, but unfortunately, the doctors back then did not explain it was genetic. We thought it was an allergy he would outgrow. I was not diagnosed until I was 55 years old and now too many problems to mention. My villi are not coming back even after 18 months on the diet strictly. I wish we had websites when I was in my childbearing years, I would be different today!

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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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    Stay tuned for more on diet during pregnancy and its role in celiac disease.
    Source:
    PLoS Med. 2018 Feb; 15(2): e1002507. doi:  10.1371/journal.pmed.1002507

    Jefferson Adams
    Celiac.com 07/17/2018 - What can fat soluble vitamin levels in newly diagnosed children tell us about celiac disease? A team of researchers recently assessed fat soluble vitamin levels in children diagnosed with newly celiac disease to determine whether vitamin levels needed to be assessed routinely in these patients during diagnosis.
    The researchers evaluated the symptoms of celiac patients in a newly diagnosed pediatric group and evaluated their fat soluble vitamin levels and intestinal biopsies, and then compared their vitamin levels with those of a healthy control group.
    The research team included Yavuz Tokgöz, Semiha Terlemez and Aslıhan Karul. They are variously affiliated with the Department of Pediatric Gastroenterology, Hepatology and Nutrition, the Department of Pediatrics, and the Department of Biochemistry at Adnan Menderes University Medical Faculty in Aydın, Turkey.
    The team evaluated 27 female, 25 male celiac patients, and an evenly divided group of 50 healthy control subjects. Patients averaged 9 years, and weighed 16.2 kg. The most common symptom in celiac patients was growth retardation, which was seen in 61.5%, with  abdominal pain next at 51.9%, and diarrhea, seen in 11.5%. Histological examination showed nearly half of the patients at grade Marsh 3B. 
    Vitamin A and vitamin D levels for celiac patients were significantly lower than the control group. Vitamin A and vitamin D deficiencies were significantly more common compared to healthy subjects. Nearly all of the celiac patients showed vitamin D insufficiency, while nearly 62% showed vitamin D deficiency. Nearly 33% of celiac patients showed vitamin A deficiency. 
    The team saw no deficiencies in vitamin E or vitamin K1 among celiac patients. In the healthy control group, vitamin D deficiency was seen in 2 (4%) patients, vitamin D insufficiency was determined in 9 (18%) patients. The team found normal levels of all other vitamins in the healthy group.
    Children with newly diagnosed celiac disease showed significantly reduced levels of vitamin D and A. The team recommends screening of vitamin A and D levels during diagnosis of these patients.
    Source:
    BMC Pediatrics

    Jefferson Adams
    Celiac.com 07/16/2018 - Did weak public oversight leave Arizonans ripe for Theranos’ faulty blood tests scam? Scandal-plagued blood-testing company Theranos deceived Arizona officials and patients by selling unproven, unreliable products that produced faulty medical results, according to a new book by Wall Street Journal reporter, whose in-depth, comprehensive investigation of the company uncovered deceit, abuse, and potential fraud.
    Moreover, Arizona government officials facilitated the deception by providing weak regulatory oversight that essentially left patients as guinea pigs, said the book’s author, investigative reporter John Carreyrou. 
    In the newly released "Bad Blood: Secrets and Lies in a Silicon Valley Startup," Carreyrou documents how Theranos and its upstart founder, Elizabeth Holmes, used overblown marketing claims and questionable sales tactics to push faulty products that resulted in consistently faulty blood tests results. Flawed results included tests for celiac disease and numerous other serious, and potentially life-threatening, conditions.
    According to Carreyrou, Theranos’ lies and deceit made Arizonans into guinea pigs in what amounted to a "big, unauthorized medical experiment.” Even though founder Elizabeth Holmes and Theranos duped numerous people, including seemingly savvy investors, Carreyrou points out that there were public facts available to elected officials back then, like a complete lack of clinical data on the company's testing and no approvals from the Food and Drug Administration for any of its tests.
    SEC recently charged the now disgraced Holmes with what it called a 'years-long fraud.’ The company’s value has plummeted, and it is now nearly worthless, and facing dozens, and possibly hundreds of lawsuits from angry investors. Meantime, Theranos will pay Arizona consumers $4.65 million under a consumer-fraud settlement Arizona Attorney General Mark Brnovich negotiated with the embattled blood-testing company.
    Both investors and Arizona officials, “could have picked up on those things or asked more questions or kicked the tires more," Carreyrou said. Unlike other states, such as New York, Arizona lacks robust laboratory oversight that would likely have prevented Theranos from operating in those places, he added.
    Stay tuned for more new on how the Theranos fraud story plays out.
    Read more at azcentral.com.