US researchers said that undiagnosed cases of celiac disease, where the immune system has a strong adverse reaction to the protein found in wheat and other grains, appear to have increased dramatically in the last 50 years. They also found, over a 45 year follow up, that people with undiagnosed celiac disease have a nearly four-fold increased risk of premature death from any cause.

The study was led by researchers at the Mayo Clinic in Rochester, Minnesota, and appears online in the July issue of the journal Gastroenterology.

For the study the researchers analyzed blood samples taken from 9,133 healthy young adults from Warren Air Force Base between 1948 and 1954, and compared them to those of 12,768 more recently recruited, gender-matched individuals who were born around the same time (5,558 people) as the Air Force group, or who were of similar age (7,210 people) when they gave their blood samples.

They tested the blood samples for signs of celiac disease (by first looking for tissue transglutaminase and, if abnormal, for endomysial antibodies).

The researchers measured survival of the Air Force base group over 45 years, and compared the prevalence of undiagnosed celiac disease between that group and the more recently recruited one.

The results showed that:

  • 14 (0.2 per cent) of the Air Force group had undiagnosed celiac disease.
  • In the Air Force group, over 45 years of follow up, death from all causes was nearly 4 times greater among individuals with undiagnosed celiac disease than those whose blood samples did not show signs of the disease (hazard ratio = 3.9; while the 95 per cent confidence interval ranged from 2.0-7.5 with P < .001).
  • Undiagnosed celiac disease was found in 68 (0.9 per cent) of individuals with similar age at sampling and 46 (0.8 per cent) in those born around the same time.
  • The rate of undiagnosed celiac disease was 4.5-fold and 4-fold in these more recently sampled groups than in the Air Force group that was sampled over 50 years ago.

The authors concluded that:

“During 45 years of follow-up, undiagnosed [celiac disease] was associated with a nearly 4-fold increased risk of death.”

“The prevalence of undiagnosed [celiac disease] seems to have increased dramatically in the United States during the past 50 years,” they added.

People who have celiac disease cannot tolerate gluten, a protein present in wheat, rye, and barley, and other foods. The protein is mostly present in food, but is also used as an ingredient in other every day products that enter the digestive tract, such as medicines, vitamins and lip balms.

The disease damages the small intestine and stops the body properly absorbing nutrients from food. There are people all over the world living with the disease, which was originally thought to be a childhood syndrome, but we now know that it is a common genetic disorder.

In the US there are some 2 million people with celiac disease, or around 1 in 33 individuals. If you have a biological parent, sister, brother or child with the disease, the chances of you having it are around 1 in 22.

The only treatment for celiac disease is a gluten-free diet, and for most people avoiding gluten their whole life will stop the symptoms, heal any existing intestinal damage, and stop further damage, with improvements noticeable within days of starting the diet.

A healed intestine can then absorb nutrients from food during digestion.

If you are diagnosed with the condition you need to spend time with a dietician to learn about foods that are and aren’t safe to eat, including how to read labels and packaging so you know which foods to buy.

If a person with celiac disease isn’t diagnosed early enough then because their body can’t get the nutritients it needs, they will probably develop longer term symptoms such as shorter stature and dental enamel problems.

“Increased Prevalence and Mortality in Undiagnosed Celiac Disease.”
Alberto Rubio-Tapia, Robert A. Kyle, Edward L. Kaplan, Dwight R. Johnson, William Page, Frederick Erdtmann, Tricia L. Brantner, W. Ray Kim, Tara K. Phelps, Brian D. Lahr, Alan R. Zinsmeister, L. Joseph Melton, Joseph A. Murray.
Gastroenterology, Volume 137, Issue 1, Pages 88-93 (July 2009).

Additional source: National Digestive Diseases Home Digestive Diseases Clearinghouse (NDDIC).

Written by: Catharine Paddock, PhD