MAYWOOD, IL – It takes an average of 3.5 years to diagnose celiac disease in patients who do not report gastrointestinal symptoms, a Loyola Medicine study has found.

Patients who reported gastrointestinal symptoms were diagnosed in an average of 2.3 months.

The study by senior author Mukund Venu, MD, and colleagues is published in the American Journal of Medicine.

An estimated 1% of the population worldwide has celiac disease and as many as six out of seven people with the disease are not diagnosed. In those with the disease, ingesting gluten triggers an immune response that damages the lining of the small intestine, preventing the proper absorption of some nutrients. The main treatment is avoiding gluten, a protein found in wheat, barley and rye.

Gastrointestinal symptoms of celiac disease include diarrhea, bloating, gas, abdominal pain, nausea, constipation, vomiting and weight loss. Non-gastrointestinal symptoms include anemia, thyroid dysfunction, osteoporosis, liver function test abnormalities and skin conditions such as dermatitis herpetiformis (itchy skin rash consisting of bumps and blisters).

Researchers reviewed the charts of 101 patients who had been diagnosed with celiac disease, confirmed by biopsy. 52 presented with gastrointestinal symptoms and 49 had non-gastrointestinal complaints.

Among the findings:

  • 43.2% of patients with non-gastrointestinal symptoms had abnormal thyroid-stimulating hormone, compared to 15.5% in the gastrointestinal symptom group
  • 69.4% of the non-gastrointestinal symptom group had anemia, compared to 11.5% in the gastrointestinal symptom group
  • 68% of the patients in the non-gastrointestinal symptom group had abnormal bone density scans, compared to 41% in the gastrointestinal group

The study excluded patients who were diagnosed with celiac disease but had not undergone a small intestine biopsy, the gold standard for diagnosing the disease. Also excluded were patients who had non-celiac gluten sensitivity (intolerance to gluten), which is managed differently.

Undiagnosed celiac disease can lead to osteoporotic fractures, infertility, unnecessary surgeries and cancer. Patients with thyroid abnormalities, anemia or bone mineral density loss should be screened for celiac disease to ensure that a possible underlying diagnosis of celiac disease is not overlooked for several years, researchers concluded.

Dr. Venu, the corresponding author, is director of clinical operations in Loyola Medicine's division of gastroenterology. His co-authors are former Loyola residents Marco Paez, MD, and Anna Maria Gramelspacher, MD, James Sinacore, PhD, of Loyola University Chicago's department of public health sciences and Laura Winterfield, MD, of the Medical University of South Carolina.

The study is titled, "Delay in Diagnosis of Celiac Disease in Patients Without Gastrointestinal Complaints."

About Loyola Medicine

Loyola Medicine, a member of Trinity Health, is a nationally ranked academic, quaternary care system based in Chicago's western suburbs. The three-hospital system includes Loyola University Medical Center (LUMC), Gottlieb Memorial HospitalMacNeal Hospital, as well as convenient locations offering primary care, specialty care and immediate care services from nearly 2,000 physicians throughout Cook, Will and DuPage counties. LUMC is a 547-licensed-bed hospital in Maywood that includes the William G. and Mary A. Ryan Center for Heart & Vascular Medicine, the Cardinal Bernardin Cancer Center, the John L. Keeley, MD, Emergency Department, a Level 1 trauma center, Illinois's largest burn center, the Nancy W. Knowles Orthopaedic Institute, a certified comprehensive stroke centertransplant center and a children’s hospital. Having delivered compassionate care for over 50 years, Loyola also trains the next generation of caregivers through its academic affiliation with Loyola University Chicago’s Stritch School of Medicine and Marcella Niehoff School of Nursing.   

For more information, visit loyolamedicine.org. You can also follow Loyola Medicine on LinkedIn, Facebook, Instagram or X (formerly known as Twitter).

About Trinity Health

Trinity Health is one of the largest not-for-profit, faith-based health care systems in the nation. It is a family of 127,000 colleagues and more than 38,300 physicians and clinicians caring for diverse communities across 26 states. Nationally recognized for care and experience, the Trinity Health system includes 93 hospitals, 107 continuing care locations, the second largest PACE program in the country, 142 urgent care locations and many other health and well-being services. In fiscal year 2024, the Livonia, Michigan-based health system invested $1.3 billion in its communities in the form of charity care and other community benefit programs. For more information, visit us at www.trinity-health.org, or follow us on LinkedIn, Facebook, and X (formerly known as Twitter).