Celiac Disease- Dangerously Underdiagnosed?

Approximately 2 million Americans have celiac disease. Unfortunately, over 80% of those who have it are not diagnosed. Since the disease can have serious long-term effects, it is important to speak with your doctor if you are at risk.  

What is celiac disease?  

Celiac disease is a genetic (passed from parent to child) immune disorder of the small intestine. The small intestine is the part of the digestive tract where nutrients, minerals, and vitamins are absorbed into the body. The surface of the small intestine is covered with tiny finger-like projections called villi where this absorption happens. In celiac disease, a protein found in certain grains, called gluten, severely damages these delicate villi. 

Celiac disease is most common in people of northern European origin and can affect people of any age. 

Symptoms of celiac disease 

The most common symptoms of celiac disease include: 

• abdominal pain 
• diarrhea 
• weight loss 
• anemia or low red blood cell count 
• joint or muscle pain 
• skin rash  

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Diagnosis of celiac disease 

If you have any of the above symptoms, your doctor may suggest further. A simple blood test is usually the first step. However, a biopsy (small sampling) of the small intestine lining is always required. This is done by endoscopy, a procedure where a doctor passes a thin, flexible camera through the mouth to the small intestine. Small surgical instruments can be used through the camera to obtain samples of the intestinal wall. The procedure is safe and painless.   

Treatment of celiac disease 

The treatment of celiac disease is to remove gluten from the diet. While simple in concept, this is often quite difficult to do. Patients must be careful to read food labels and avoid products containing the grains wheat, rye, barley, and often oats. Safe alternatives to wheat flour include rice, potato, or soy flour. Meats, fish, poultry, fruits, and vegetables do not contain gluten.   

Most grocery stores and now many restaurants offer gluten-free options. Patients with celiac disease should meet with a registered dietician to learn how to succeed with this challenging diet. 

Complications of celiac disease 

Complications from celiac disease are usually avoided by adherence to a strict gluten-free diet.  Untreated celiac disease can lead to several severe conditions, such as: 

• cancer of the small intestine 
• osteoporosis 
• iron deficiency 
• vitamin deficiency 
• malnutrition 
• infertility 

Celiac disease is sometimes difficult to diagnose because of the many different symptoms that it can produce. If you feel you are at risk for celiac disease, or if a parent or sibling has been diagnosed with celiac disease, discuss your risk factors with your doctor.   

Dr. Michael Kaczanowski of Foundation Gastroenterology is board-certified in internal medicine and gastroenterology and has served the southern New Hampshire community for the past 15 years. He received his medical degree from St. George’s University School of Medicine, Grenada and completed his residency at Norwalk Hospital, Yale University teaching affiliate, Norwalk, CT. Here, he held the position of Chief Medical Resident and obtained a Fellowship in Gastroenterology and Hepatology. Dr. Kaczanowski has published on the use of wireless capsule endoscopy for diagnosis of small bowel neoplasms. His area of special interest is in the detection of colon cancer, esophageal disease, and swallowing disorders. He is a Fellow of the American Gastroenterological Association and has been named Top Doctor in Gastroenterology by New Hampshire Magazine for several years. 

Statistics Resources: 

National Institute of Diabetes and Digestive and Kidney Diseases. Definitions and facts for celiac disease. 

Whitburn J, Rao SR, Paul SP, Sandhu BK. Diagnosis of celiac disease is being missed in over 80% of children particularly in those from socioeconomically deprived backgrounds. Eur J Pediatr. 2021;180(6):1941-1946.  DOI: 10.1007/s00431-021-03974-8