By Maria Luci, Director of Research Engagement, Beyond Celiac. 

Celiac disease is a serious autoimmune disease that is triggered by consuming a protein called gluten, which is found in wheat, barley and rye. There are more than 300 symptoms of celiac disease, which include diarrhea, bloating, vomiting, fatigue, brain fog, and joint pain. Left undiagnosed (and therefore untreated), people with celiac disease can develop further health issues such as osteoporosis, infertility and even certain cancers.

Celiac Disease in Women

Celiac disease affects an estimated 3 million Americans, making it one of the most common autoimmune diseases. And like other autoimmune diseases, celiac disease tends to occur more in women than men. Historically, women have been diagnosed with celiac disease at rates two to three times higher than men. Research shows that up to 70% of those currently diagnosed with celiac disease are women.

Celiac disease symptoms in women may also include:

  • Unexplained infertility
  • Stillbirths or miscarriages
  • Menstrual irregularities
  • Absence of menstruation
  • Iron deficiency anemia
  • Osteoporosis and osteopenia

Celiac Disease and Infertility

While celiac disease is commonly associated with gastrointestinal issues, it can also impact the reproductive system. The damage caused by celiac disease can lead to infertility, miscarriages, stillbirths and other negative pregnancy outcomes.

A study published in the journal Human Reproduction in 2018 highlighted the importance of physicians considering celiac disease as the cause of a woman’s unexplained reproductive issues. Women struggling with unexplained infertility are encouraged to get tested for celiac disease.

Steps to Diagnosing Celiac Disease

  1. Remain on a gluten-containing diet. It is important to remain on a normal, gluten-containing diet prior to testing for celiac disease. Test results may be inaccurate if the person has been following a gluten-free diet. If someone has been following a gluten-free diet and needs to be tested for celiac disease, their doctor may recommend a gluten challenge—which involves intentionally eating gluten to see if your body produces celiac disease antibodies—to get accurate results.
  2. Blood tests. Celiac disease testing typically begins with a blood panel screening for specific antibodies.  The currently recommended blood tests for celiac disease include:
    • Total IgA
    • IgA-tTG
    • IgA-EMA
    • If IgA is deficient, it is recommended that the IgG/IgA-DGP also be ordered. At the discretion of the doctor, IgG-AGA can also be ordered.
  1. If certain antibody screens are positive or if your doctor still suspects celiac disease after the panel, an endoscopic biopsy is usually ordered. Small samples of the villi of the small intestine are biopsied and reviewed under microscope by a pathologist to determine if damage is present. If damage is found, results will be conveyed as a Marsh score of stage 0-4, with 0 meaning no damage found and likely no celiac disease and 4 being the most advanced stage of damage.

Treatment for Celiac Disease

Currently the only treatment for celiac disease is the gluten-free diet. However, there are currently a number of potential treatments in the drug development pipeline, including one that is currently in Phase 3 clinical trials. However, until a drug is approved, the only way to heal the intestines and reduce risks of further complications such as osteoporosis or infertility from celiac disease is to follow a strict, lifelong gluten-free diet.

For more information, Beyond Celiac

Since 2003, Beyond Celiac has been the leading patient advocacy and research-driven celiac disease organization working to drive diagnosis, advance research and accelerate the discovery of new treatments and a cure. Beyond Celiac is the only organization that has committed itself to achieve treatments toward a cure by 2030. By engaging with the top scientists in the field, awarding research grants, and supporting the community, Beyond Celiac envisions a world in which people with celiac disease can live healthy lives and eat without fear – a world Beyond Celiac.