December 2007

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Celiac Disease and the Infertility Link

What is celiac disease disease? And, why is it important in the world of women's heath? Celiac disease can drastically impact reproductive health.

Celiac Disease
If you have never heard of celiac disease, it is not surprising. Roughly one out of every 133 Americans has celiac disease, but 97 percent remain undiagnosed. This means that almost three million Americans have celiac disease and only 100,000 know they have it.

People with celiac disease cannot tolerate gluten. Gluten is found in any food product or additive that contains wheat, rye or barley. When people with celiac disease eat foods or use products containing gluten, their immune system responds by damaging the small intestine. Because the body's own immune system causes the damage, celiac disease is considered an autoimmune disease. The symptoms of celiac disease vary widely and can resemble those of other conditions, often causing misdiagnosis. As a result, the average time to diagnosis is nine years.

Symptoms of celiac disease include:

• Abdominal pain
• Diarrhea
• Fatigue
• Itchy skin rash
• Tingling/numbness in hands and feet
• Delayed growth in children

Left untreated, people with celiac disease can develop further complications such as other autoimmune diseases, osteoporosis, thyroid disease, and cancer. Diagnosis begins with a simple blood test. The treatment, a gluten-free diet, is available to everyone. To review the symptom checklist, go to www.CeliacCentral.org.

Let me tell you why I am so interested in this topic.

Although I am just 24 years old, I am fortunate to have found three exceptional role models through my own experience with celiac disease. All are women who experienced devastating pregnancy complications as a direct result of undiagnosed celiac disease.

Alice Bast, NFCA Executive Director
I met Alice in 2004 during the National Institutes of Health Celiac Disease Consensus Conference while writing an article on celiac disease for the Palm Beach Post. It turned out to be one of the most important days of my life.

As Alice explained the basics of the disease, she mentioned that migraine headaches are a symptom of celiac disease. I had suffered debilitating migraines my entire life and had tried every headache medication available, all to no avail. I immediately got tested and, sure enough, I had celiac disease. The week after I received my positive blood test, I called Alice to thank her and learn more about celiac disease. Alice told me her very moving personal story.

Alice first experienced symptoms of celiac disease when she was pregnant with her second child. The first six months of pregnancy were uneventful. She felt healthy and her unborn baby was quite a little kicker! At the end of the second trimester, Alice was struck with severely debilitating diarrhea. Several times she visited her obstetrician expressing her concern. He told her not to worry.

Two weeks before her due date, the diarrhea had gotten out of control and Alice continued to say that the baby was not moving correctly. Again, the doctor said that the baby was in a small space without much room to maneuver and that Alice shouldn't worry so much.

Two days later, Alice told her husband that all movement had ceased. He put his head on her tummy and, as Alice says, "the panic in his eyes confirmed my fears." They drove to the hospital where Alice delivered a full-term stillbirth child. They named the baby Emily.

It took Alice several more years and a near second stillbirth baby before she was diagnosed with celiac disease.

Heidi Collins, CNN Newsroom Anchor and National Foundation for Celiac Awareness (NFCA) Spokesperson
Heidi and I first met in 2006 at the International Celiac Disease Symposium in New York City. We immediately bonded over gluten-free food and the desire to help all Americans with celiac disease get accurately diagnosed.

Heidi's passion for helping people with celiac disease comes from more than a decade of suffering debilitating symptoms and, like Alice, losing a child.

Heidi's constant health issues grew nearly intolerable when she moved to CNN's New York office. After visiting doctors for 15 years with one health problem after another, her general practitioner diagnosed her with celiac disease. With one simple blood test, Heidi had found a diagnosis that would allow her to work toward a cure for her chronic medical conditions and an answer as to why her pregnancy had failed.

Connie Maltin, my mom
My parents are the most supportive, kind and generous people I know, making them the perfect candidates for parenthood. They were married after my mom convinced my dad that she made the best cookies in America. Little did they know that those delicious cookies would cause them some of the greatest devastation imaginable…miscarriage.

Because of my mom's celiac disease, it took nine years to successfully have a child, ME, and it was still a close call. I was born two months early and weighed only about three pounds.

Celiac Disease and Infertility Link
Over the last 10 years, several studies have examined the link between celiac disease and infertility and found that women suffering from unexplained infertility may have clinically silent celiac disease.

• One study conducted by physicians at Thomas Jefferson University Hospital in Philadelphia found that the rate of recurrent spontaneous abortion (RSAB) and infertility in celiac disease patients is at least four times higher than the general population. They recommend that patients who experience unexplained infertility or RSAB be screened for celiac disease.
• A study from the Department of Medicine at Tampere University Hospital and Medical School at the University of Tampere, Finland, found that the rate of celiac disease among women reporting infertility was 4.1 percent. Although the exact reason for the increased risk remains unknown, researchers suggested that female celiac disease patients not adhering to a gluten-free diet have a shortened reproductive period and early menopause. Males with celiac disease have shown gonadal dysfunction, which could also contribute to fertility complications.
• The link between celiac disease and infertility is currently being evaluated by researchers at Molinette Hospital in Turin, Italy. Early reports suggest that the prevalence of celiac disease among women with unexplained infertility is 2.5 percent to 3.5 percent higher than the control population. They suggest that celiac disease represents a risk for abortion, low birth weight babies and short-breast feeding periods, all of which can be corrected with a gluten-free diet.

What is infertility?
Infertility is defined as the biological inability of a woman or man to contribute to conception. Many experts define infertility as the inability to get pregnant after at least one year of trying. Women who are able to get pregnant but then have repeat miscarriages are also said to be infertile. According to the National Center for Health Statistics, roughly 12 percent of women in the United States—up to 7.3 million—had difficulty getting pregnant or carrying a baby to term in 2002.

Although it is commonly believed that infertility is heavily related to female factors, only about one-third of cases of infertility actually stem from the woman. About one-third of cases originate with the male partner and the remaining cases are a combination of unknown factors or a mix of male and female complications.

Infertility in Women:
Most women who suffer from infertility have a problem with ovulation, meaning there is a complication with the eggs being released to be fertilized. Other causes of infertility include:

• Problems with the uterus lining
• Uterine fibroids
• Blocked fallopian tubes because of endometriosis, ectopic pregnancy, or pelvic inflammatory disease.

Factors that increase a woman's risk of infertility:

• Age
• Diet
• Athletic activity
• Stress
• Overweight or underweight
• Smoking
• Alcohol consumption
• Sexually transmitted diseases (STD's)
• Health problems that cause hormonal changes
• Celiac disease

Infertility in Men:
Infertility in men is generally caused by producing too few or no sperm. The problem also may be the sperm's ability to travel to the female's egg and fertilize it. This is typically caused by abnormal sperm shape that prevents it from traveling in the correct form.

Factors that increase a man's risk of infertility:

• Alcohol consumption
• Drugs
• Toxins in the environment such as lead and pesticides
• Smoking
• Chemotherapy and radiation treatment for cancer
• Celiac disease

Tests for Infertility

• Hysterosalpingography (HIS-tur-oh-SALP-ing-AHG-ruh-fee): Physicians use x-rays to check for physical problems of the uterus and fallopian tubes. They inject a dye through the vagina into the uterus, which shows up on the x-ray. This will allow the physician to determine if the dye moves normally through the uterus into the fallopian tubes. With these x-rays, doctors can find blockages that may be causing infertility.
• Laparoscopy (lap-ah-RUHSS-kuh-pee): During this surgery doctors use a tool called a laparoscope to see inside the abdomen. The doctor makes a small cut in the lower abdomen and inserts the laparoscope to check the ovaries, fallopian tubes, and uterus for disease and physical problems. Doctors usually can find scarring and endometriosis by laparoscopy.

Treating Infertility
There are several ways to treat infertility, including:

• Medicine (clomiphene, human menopausal gonadotropic, follicle-stimulating hormones, gonadotropic releasing hormones, metformin, and bromocriptine).
• Surgery
• Artificial insemination or assisted reproductive technology
• Often treatments are combined.

For More Information

• Resolve: The National Infertility Association
• National Institute of Diabetes and Digestive and Kidney Diseases

The National Foundation for Celiac Awareness’s mission is to raise awareness and funding for celiac disease that will advance research, education and screening, and improve the quality of life of children and adults affected by this autoimmune disease through grant making and direct programming.

The National Foundation for Celiac Awareness (NFCA) is a nonprofit organization made up of medical specialists, professionals and industry leaders—all working with leading researchers to better understand celiac disease and to find a cure.  The NFCA web site, www.CeliacCentral.org, offers free, comprehensive information and support materials to celiac disease patients, their families and healthcare professionals. 

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Content last updated December 1, 2007.