Cleveland Clinic Fertility Expert Dr. Laura Detti explains how undiagnosed celiac disease can result in reproductive problems in women. She says physicians should consider celiac disease as a possible cause of a woman's unexplained infertility. If a woman thinks they may have celiac disease, they should talk to their doctor about getting tested. Infertility and celiac disease can be hard to diagnose, but once the diagnosis is made the condition can be successfully treated and managed.
Our friends at Beyond Celia envision a world in which people with celiac disease can live healthy lives and eat without fear of gluten exposure. Beyond Celiac unites with patients and partners to drive diagnosis, advance research and accelerate the discovery of new treatments and a cure. Beyond Celiac CEO Alice Bast and Board Chair Dr. Alan Ehrlich share more about celiac disease and women's health in their inaugural Speaking of Women's Health column!
What is Celiac Disease?
Celiac disease is a serious autoimmune disease that is triggered by consuming foods that contain gluten, which is found in wheat, barley and rye.
Celiac Disease Symptoms
Commonly recognized symptoms of celiac disease include:
People with celiac disease may also have other symptoms, including common midlife perimenopausal symptoms like:
- brain fog
- joint pain
Some people have no symptoms but have impaired absorption that can lead to vitamin and iron deficiencies as well as osteoporosis.
If celiac disease is untreated, complications can develop, such as osteoporosis, dental problems and even certain cancers, so early diagnosis of celiac disease is very important.
Dermatitis Herpetifomis (DH)
About 15-25% of individuals with celiac disease experience dermatitis herpetifomis (DH), a severe, chronic skin rash. This rash is intensely itchy and can be bumpy or bulbous.
Celiac Disease in Women
Celiac disease affects about 3 million Americans, making it one of the most common autoimmune diseases. And like other autoimmune diseases, celiac disease tends to occur more frequently in women. Research shows that up to 70% of those currently diagnosed with celiac disease are women.
Celiac disease may result in reproductive health problems including:
- Menstrual irregularities
- Unexplained infertility
- Stillbirths or miscarriages
A 2018 study in the journal Human Reproduction 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. Women with persistent low iron levels, low vitamin D levels, low bone density or osteoporosis should also be evaluated for celiac disease.
Steps to Diagnosing Celiac Disease
If you think you might have celiac disease, you should talk to your health care clinician about getting tested. The following steps are important in making a correct diagnosis:
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. Unfortunately, this may provoke the very symptoms that are causing problems in the first place.
2. Blood tests
Celiac disease testing typically begins with a blood panel screening for specific antibodies. Blood tests that could help diagnose celiac disease include:
- Total IgA
- IgA-tTG (tissue transglutaminase)
- If IgA is deficient, it is recommended that the IgG/IgA-DGP also be ordered. At the discretion of the physician, IgG-AGA can also be ordered. Genetic haplotypes can also be tested as only certain haplotypes are associated with risk of celiac disease
3. Upper Endoscopy also called "EGD"
If antibody tests are positive and/or if your physician still suspects celiac disease, an endoscopy is usually done. The doctor will use a scope to look at the stomach and small intestines. Multiple samples of the small intestine will be biopsied and reviewed under microscope by a pathologist to determine if damage is present.
4. Know your family history
Celiac can run in families and may manifest differently, so it's important to know your family's health history to help get a proper diagnosis.
When to Get Tested for Celiac Disease
- If you are persistently low in iron (low ferritin level), have a persistently low 25-oh vitamin D level or any bone loss you should consider getting tested for celiac disease.
- If you have infertility, premature ovarian insufficiency and/or recurrent miscarriage ask to be tested.
- If you have been told you have Irritable Bowel Syndrome (IBS) or Inflammatory Bowel Disease (IBD) you should ask about being evaluated for Celiac Disease.
Many adults who do not have celiac disease are still gluten intolerant and feel better by avoiding gluten. This is called non-celiac gluten sensitivity.
Treatment for Celiac Disease
Currently the only treatment for celiac disease is the gluten-free diet. Unfortunately, even on the gluten-free diet some people with celiac disease continue to have symptoms. However, many people do improve and resolve fatigue, anemia and even bone loss.
For those with continued symptoms, there is hope on the horizon. There are a number of potential treatments being studied. However, until a drug is approved, the only way to heal the intestines and reduce risks of further complications, such as osteoporosis or infertility, is to follow a strict, gluten-free diet. Thankfully this is getting easier than it has been in the past.
More resources can be found at BeyondCeliac.org. Beyond Celiac is accelerating research for treatments toward a cure so that people with celiac disease can live healthy lives and eat without fear – a world Beyond Celiac.
Be Strong, Be Healthy, Be in Charge!
-Alice Bast and Alan Ehrlich MD
About Alice Bast
After an arduous 8-year health journey that included multiple miscarriages and a full-term still birth due to undiagnosed celiac disease, Alice Bast founded the nonprofit organization Beyond Celiac in 2003. Among her accomplishments, Alice co-authored an article titled “Celiac Disease and Reproductive Health Issues,” which was published in the Journal of Practical Gastroenterology. She was the Principal Investigator on an NIH funded grant titled, “Novel Educational Aids for Celiac Disease.” Alice’s story has been featured in Good Housekeeping Magazine, Newsweek, USA Today, US News & World Report, and on nationally televised programs such as ABC’s “The View” and “The Doctors”.
About Alan Ehrlich, MD
Alan Ehrlich, MD, FAAFP is the Board Chair of Beyond Celiac and an Associate Professor of Family Medicine and Community Health at the University of Massachusetts Medical School in Worcester. He is board certified from the American Board of Family Medicine and a Fellow of the American Academy of Family Physicians. Alan graduated from Rutgers New Jersey Medical School and completed his residency at the University of Massachusetts Medical Center. He is the Executive Editor of DynaMed and writes the Evidence-Based Medicine column for Clinical Advisor magazine.
About Laura Detti, MD
Laura Detti, MD has completed a Research Fellowship at Yale University and a Reproductive Endocrinology and Infertility Fellowship at Wayne State University School of Medicine in Michigan. She has done an Obstetrics & Gynecology Internship at the University of Virginia and completed her Obstetrics & Gynecology Residency at the University of Cincinnati.Dr. Detti was appointed the Department Chair for the Cleveland Clinic Department of Subspecialty Care for Women's Health in the Ob/Gyn & Women's Health Institute in 2020.
women's health, celiac disease, autoimmune disease, gluten, gluten-free diet, infertility, miscarriage, pregnancy, vomiting, bloating, diarrhea, fertility, dermatitis herpetifomis, Beyond Celiac, Alice Bast, Alan Ehrlich, MD
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