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Many Americans have undiagnosed celiac disease reports new study

Robin Wulffson MD's picture
celiac disease, lactose intolerance, diarrhea, gastrointestinal problems

If you have symptoms of bloating, intermittent diarrhea, lactose intolerance, or other symptoms related to the gastrointestinal tract, you may have celiac disease. Celiac disease is a condition that damages the lining of the small intestine and prevents it from absorbing parts of food that are important for staying healthy. The damage is due to a reaction to eating gluten, which is found in wheat, barley, rye, and possibly oats. A new study set out to determine the prevalence of the condition in the United States.

The results were published online on July 31 in the American Journal of Gastroenterology by researchers affiliated with the Mayo Clinic (Rochester, Minnesota), Orebro University Hospital (Orebro, Sweden), Karolinska University Hospital and Karolinska Institutet (Stockholm, Sweden), and the National Institutes of Health (Bethesda, Maryland).

The study authors noted that the prevalence of celiac disease in the United States is unknown. Therefore, they set out to determine its prevalence by using a nationally representative sample. The study group was comprised of 7,798 individuals aged six years or older who participated in the National Health and Nutrition Examination Survey 2009–2010. Serum samples from all participants were tested for immunoglobulin A (IgA) tissue transglutaminase antibodies and, if findings were abnormal, also for IgA endomysial antibodies. Information regarding a prior diagnosis of celiac disease and use of a gluten-free diet was obtained by direct interview. Celiac disease was defined as having either double-positive serology (serologically diagnosed CD) or a reported diagnosis of CD by a physician or other healthcare professional and being on a gluten free diet.

The researchers identified 35 participants, 29 of whom were unaware of their diagnosis. Their median age was 45 years (range: 23–66 years); 20 were women and 29 were non-Hispanic white. They determined that the prevalence of celiac disease in the US was 0.71% among non-Hispanic whites. Overall, 55 participants reported following a gluten free diet, which corresponded to a prevalence of 0.63%.

The authors concluded that the prevalence of CD in the United States was 0.71% (1 in 141), which was similar to that found in several European countries. However, most cases were undiagnosed. Celiac disease was rare among minority groups; however, it affected 1% of non-Hispanic whites. Most individuals who were following a gluten free diet did not have a diagnosis of celiac disease.

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The exact cause of celiac disease is unknown. The lining of the intestines contains areas called villi, which help absorb nutrients. When people with celiac disease eat foods or use products that contain gluten, their immune system reacts by damaging these villi.This damage affects the ability to absorb nutrients properly. A person becomes malnourished, no matter how much food he or she eats. The disease can develop at any point in life, from infancy to late adulthood.

Individuals with celiac disease are more likely to have:

  • Autoimmune disorders such as rheumatoid arthritis, systemic lupus erythematosus, and Sjogren syndrome
  • Addison's disease
  • Down syndrome
  • Intestinal cancer
  • Intestinal lymphoma
  • Lactose intolerance
  • Thyroid disease
  • Type 1 diabetes

The symptoms of celiac disease can be different from person to person. This is part of the reason why many cases are not diagnosed. For example, one person may have constipation, a second may have diarrhea, and a third may have no problem with stools.

Gastrointestinal symptoms include:

  • Abdominal pain, bloating, gas, or indigestion
  • Constipation
  • Decreased appetite (may also be increased or unchanged)
  • Diarrhea, either constant or off and on
  • Lactose intolerance (common when the person is diagnosed, usually goes away after treatment)
  • Nausea and vomiting
  • Stools that float, are foul smelling, bloody, or “fatty”
  • Unexplained weight loss (although people can be overweight or of normal weight)

Because the intestines do not absorb many important vitamins, minerals, and other parts of food, the following symptoms may appear over time:

  • Bruising easily
  • Depression or anxiety
  • Fatigue
  • Growth delay in children
  • Hair loss
  • Itchy skin (dermatitis herpetiformis)
  • Missed menstrual periods
  • Mouth ulcers
  • Muscle cramps and joint pain
  • Nosebleeds
  • Seizures
  • Tingling or numbness in the hands or feet
  • Unexplained short height

Children with celiac disease may have:

  • Defects in the tooth enamel and changes in tooth color
  • Delayed puberty
  • Diarrhea, constipation, fatty or foul-smelling stools, nausea, or vomiting
  • Irritable and fussy behavior
  • Poor weight gain
  • Slowed growth and shorter-than-normal height for their age

Reference: The American Journal of Gastroenterology