2010-12-23 05:49:24 UTC

Getting Serious about Celiac

Dec. 23, 2010

“No matter what medical discipline you work in, you need to know something about celiac disease. But we are all overburdened with clinical and increasingly administrative issues, and there is fierce competition for the time and effort available for medical education,” says Daniel A. Leffler, MD, MS, Director of Clinical Research at the Celiac Center of Beth Israel Deaconess Medical Center, in Boston, Massachusetts, and Assistant Professor of Medicine at Harvard Medical School,

For these reasons, he finds it quite understandable that celiac disease, considered to be an unattractive mix of rare, mild and confusing, often gets triaged in favor of higher priority issues. “However, work done by investigators around the world has greatly expanded our understanding of celiac disease: the idea of celiac disease as a rare, mild and confusing disorder is decidedly outdated. Celiac disease is coming into its own: there was unprecedented coverage of this topic at Digestive Diseases Week 2010.”

There is much to be done to identify the 95 percent who are undiagnosed and improve the care of the millions of individuals with celiac disease. With that in mind, Dr. Leffler addressed some of the most common questions and misconceptions about celiac disease. It is our hope that this information will be useful in your practice and that you will forward it to your colleagues in primary care.  

What every physician needs to know about celiac disease

Celiac disease is not rare.

It often comes as a surprise to people, both patients and colleagues, when they learn that celiac disease is estimated to affect around 1% of the population in many countries. For perspective, this is about the same number as all of inflammatory bowel disease and all of type 1 diabetes mellitus—combined. The fact that we don’t see so many patients with celiac disease is a function of lack of diagnosis, not lack of prevalence. The prevalence of celiac disease is also increasing at a pace similar to that for other autoimmune and allergic disorders.   

The stereotype of celiac disease as primarily affecting children of European descent (and usually Irish or Italian) is also incorrect. We now know that individuals from a variety of backgrounds are at risk for celiac disease including European, North African, Middle Eastern and Indian. Also, individuals are not born with celiac disease. Celiac disease can be precipitated in a genetically predisposed individual at any time, and diagnoses in the ninth decade are not unheard of. The typical age of diagnosis in the United States is between 40 and 50 years. 

Celiac disease is not mild.

Celiac disease, like other inflammatory disorders such as IBD or rheumatoid arthritis, varies greatly in severity, with courses ranging from silent over years to rapidly progressive and even fatal. Overall, however, a number of high-quality studies point to a significant increase in mortality for individuals with untreated symptomatic celiac disease. Much of this increase resolves with diagnosis and treatment but may not completely normalize. For these reasons, actively testing for celiac disease is warranted, and diagnosed individuals should be educated and monitored for response to therapy and complications.

Celiac disease is not difficult to diagnose.

The advent of highly accurate serologic tests has dramatically lowered the burden of diagnosing celiac disease. The old anti-gliadin antibodies were notoriously prone to false positives, and the subsequent endomysial antibody testing was relatively expensive and the quality of testing outside of highly experienced reference laboratories varies. Contemporary tests, primarily IgA-tissue transglutaminase (tTG), but also most recently deamidated gliadin peptide (DGP) testing, are highly accurate and cost-effective. In most settings, a negative tTG with sufficient total IgA level accurately rules out celiac disease and costs less than $50. Individuals with positive results should in general go on to confirmation of diagnosis by duodenal biopsy.

Diagnosis of celiac disease is the first step—not the last.

Celiac disease is a chronic inflammatory disorder, and the gluten-free diet (the only treatment) is safe but quite difficult, and without proper follow up, poor adherence and nutritional imbalances are common. A detailed discussion of monitoring and management of celiac disease is beyond the scope of this article, but the NIH consensus guidelines are still quite applicable:

  1.  Consultation with a skilled dietitian
  2.  Education about the disease
  3.  Lifelong adherence to a gluten-free diet
  4.  Identification and treatment of nutritional deficiencies
  5.  Access to a support and advocacy group
  6.  Continuous long-term follow up by a multidisciplinary team

Dr. Leffler co-authored with Melinda Dennis, MS, RD, LDN, the book Real Life with Celiac Disease: Troubleshooting and Thriving Gluten Free (AGA Press 2010). This resource covers medical management, nutritional management, and much more: unique presentations, genetic tests, complications, cross-contamination, gluten-free lifestyle, and care over the life span. Each of the more than 50 chapters, contributed by experts from around the globe, presents a patient case that elucidates the topic of the chapter. Learn more at www.RealLifewithCeliacDisease.com.

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