A Mayo Clinic analysis that investigated the prevalence of celiac disease revealed that around 1.8 million people in the U.S. suffer from the disease. However, about 1.4 million are unaware they even have the disease.

The study, featured in the American Journal of Gastroenterology also reveals that 1.6 million people in the U.S. are on a gluten-free diet, even though they have never been diagnosed with celiac disease.

The prevalence of diagnosed and undiagnosed celiac disease had been researched to a similar extent prior to the Mayo clinic study, but this study reveals the most definite results on the topic.

Co-author Joseph Murray, M.D., a Mayo Clinic gastroenterologist states: “This provides proof that this disease is common in the United States. If you detect one person for every five or six (who have it), we aren’t doing a very good job detecting celiac disease.”

Celiac disease is a digestive disorder, which occurs in genetically susceptible individuals when they consume wheat, rye and barley. The disorder can be managed by eating a gluten-free diet, which eliminates the gluten protein. The findings have revealed that around 80% of people on a gluten-free diet have not been diagnosed with celiac disease.

Dr. Murray states:

“There are a lot of people on a gluten-free diet, and it’s not clear what the medical need for that is. It is important if someone thinks they might have celiac disease that they be tested first before they go on the diet.”

The researchers combined positive blood tests for celiac disease together with a nationwide population sample survey from interviews of the National Health and Nutrition Examination Survey conducted by the Centers for Disease Control and Prevention (CDC). The unique survey was developed to evaluate U.S. adults’ and children’s health and nutrition by combining interviews and physical examinations.

The results showed that celiac disease is much more prevalent in Caucasians. Previous research conducted in Mexico revealed that celiac disease could be just as prevalent as in the U.S. However, co-author Alberto Rubio-Tapia, M.D., a Mayo Clinic gastroenterologist declared: “…virtually all the individuals we found were non-Hispanic Caucasians.”

According to Dr. Rubio-Tapia, “…that is something we don’t fully understand.” The study revealed that the prevalence of celiac disease in the U.S. is comparable to the rate in several European countries.

Signs and symptoms of celiac disease may range from severe to mild. It is also possible to have celiac disease without any symptoms at all. Many adults with subtle disease only have fatigue and anemia, or may have only vague abdominal discomfort such as bloating, abdominal distension and excess gas.

Celiac disease is a permanent disorder and its effects may change from time to time during a person´s lifetime. Subtle symptoms can occur in other organs – other than the bowel itself.

Some signs and symptoms are due to malabsorption and malnutrition resulting from the disorder. It should also be noted that symptoms can vary greatly from person to person. Signs and symptoms associated with celiac disease can include:

  • Abdominal cramps, gas and bloating
  • Bone and joint pain
  • Depression
  • Diarrhea
  • Easy bruising
  • Failure to thrive in children
  • Flatulence (gas)
  • Fluid retention
  • Foul-smelling stools
  • Gastritis, gastrointestinal symptoms, including hemorrhage
  • General weakness, fatigue
  • Increased amount of fat in the stools
  • Infertility
  • Persistent hunger
  • Iron deficiency anemia
  • Irritability
  • Malnutrition
  • Mouth Sores
  • Muscle wasting, muscle weakness, muscle cramps
  • Nausea, vomiting
  • Nerve damage (tingling in the legs and feet)
  • Nose bleeding
  • Nutrient Deficiencies
  • Obesity
  • Osteoporosis
  • Panic Attacks
  • Red urine
  • Skin Rash
  • Stomach Discomfort, stomach rumbling
  • Unhealthy pale appearance
  • Vertigo
  • Vitamin B12, D, and K deficiencies
  • Weight Loss
  • A degree of lactose intolerance may develop
  • Dermatitis herpetiformis (rashes typically on the elbows, knees and buttocks)
  • Sometimes symptoms are not clear, and the patient just generally feels unwell

For more information on celiac disease, read our article What is Celiac Disease?

Written by Petra Rattue