Patients with Celiac Disease Should Have Regular Follow-up

Celiac disease (CD) is a lifelong autoimmune intestinal disorder and runs in families. First degree relatives of individuals with CD may or may not manifest symptoms of the disease. It affects people to varying degrees, from being critically ill to being completely well.

Gluten is the common name for the offending proteins in specific cereal grains that are harmful to persons with CD. When gluten is ingested, it causes immunologically toxic reaction in the lining of the small intestine. The small intestine is lined by villi which help absorb the nutrients from the food we eat. The toxic reaction damages these villi thus interfering with the absorption of nutrients and leading to diarrhea and malnutrition.

Symptoms of celiac sprue in children appear when cereal is introduced in their diet, anywhere between the ages of four to 24 months. They present with diarrhea, impaired growth and abdominal distension. Vomiting, anemia and swelling of the body tissues with fluid occur due to malnutrition.

Celiac sprue can develop in adults as new cases. About 20 per cent of the patients may be diagnosed after the age of 60. Otherwise, most adults with celiac disease will have history of the disease going back to childhood.

What is the long term effect of celiac disease if it remains untreated?

Chronic diarrhea will result in fluid and electrolyte imbalance. Development of cancer of the small bowel is a possibility. Poor absorption of food nutrients will result in malnutrition and poor immune system. Iron-deficiency anemia is now the most common clinical presentation in adults with celiac sprue. Osteoporosis is another likely complication of celiac disease.

Approximately, 50 per cent of adult patients do not have clinically significant diarrhea. So, making a diagnosis and provide follow-up is not always easy.

Why regular follow-up is important?

An article in the Canadian Journal of Gastroenterology (August 8, 2010) says that long term follow-up of patients with celiac disease is important for monitoring three things: their clinical status, dietary compliance and complications.

Most guidelines recommended a scheduled annual review and regular measurements of body mass index, dietary review with a nutritionist and serial tissue transglutaminase antibody testing. Some recommend annual hemoglobin, ferritin and folate checks. One guideline recommended annual hemoglobin, electrolyte, calcium, albumin, ferritin, folate, fat-soluble vitamin, liver function test, parathyroid hormone and bone density measurements (approximately $400 per patient).

What is the science behind these guidelines?

Unfortunately, there are no evidence based guidelines to suggest exactly what needs to be done in follow-up to change the outcome of the disease or prevent complications from the disease itself.

The survey done by the authors of the article say that most gastroenterologists in Canada provide routine long-term follow-up to their patients with celiac disease. Those who do not, delegate this role to the patient’s family doctor.

The follow-up is most often provided on an annual basis, and includes reinforcement of the need to adhere to a gluten-free diet, dietary review, physical examination, laboratory tests and a recommendation to join a patient support and advocacy group, says the article.

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