What Happens After Patients are Diagnosed With Celiac Disease?

Most patients with celiac disease are not adequately followed, according to the August issue of Clinical Gastroenterology and Hepatology (CGH). Improving follow-up strategies for patients with celiac disease could improve their outcomes.

Adherence to a gluten-free diet is the only effective treatment for celiac disease. This is a difficult diet to follow, however, and patients are supposed to make regular visits to the clinic and receive regular serologic tests to see how they are progressing. It is not clear how many patients actually follow through on these recommendations.

To find out, Margot Herman et al. followed 122 patients in Olmsted County, Minnesota who were diagnosed with celiac disease, based on biopsy analysis. They determined the frequency at which patients received follow-up examinations, from 6 months to 5 years after diagnosis.

“What we found was that most of these patients really aren’t having follow-up—particularly not the kind of follow up that the AGA currently recommends”, said Herman in a video abstract:

The 2004 National Institutes of Health consensus statement and 2006 American Gastroenterology Association (AGA) technical review on celiac disease recommended that patients be evaluated at “regular intervals” or with “periodic visits” by a “physician and a dietitian”.

“Using even the most lax interpretation of what the guidelines may mean, patients should have 2 visits within a 5-year period” and 2 serology tests, said Herman. “We found that only a third of patients here were having that type of follow-up”.

Among 113 patients (93%) who were followed for more than 4 years, only 35% received follow-up analyses that were consistent with AGA recommendations.

Herman et al. estimated that at 1 and 5 years after diagnosis with celiac disease, 41.0% and 88.7% of the patients had follow-up visits, 33.6% and 79.8% were assessed for compliance with a gluten-free diet, 3.3% and 15.8% met with a registered dietitian, 2.5% and 18.1% had an additional intestinal biopsy, and 22.1% and 65.6% received serologic testing for markers of celiac disease.

Herman says that more physicians and patients need to be made aware of the guidelines, and further research is needed to identify barriers to follow up.

In an editorial that accompanies the article, Peter R. Gibson et al. point out that long-term management is also important to identify diseases and complications associated with celiac disease, such as thyroid disease or diabetes.

In the same issue of CGH, Samantha Stoven, Joseph Murray, and Eric Marietta review advances in treatment of celiac disease via gluten modification. They discuss treating celiac disease with diets that include wheat alternatives, wheat selection, enzymes that alter wheat, oral enzyme supplements, and polymeric binders.

Read the article online.
Herman ML, Rubio-Tapia A, Lahr BD, et al. Patients with celiac disease are not followed up adequately. Clin Gastroenterol Hepatol 2012;10:893–899.e1.

Read the accompanying editorial.
Gibson PR, Shepherd SJ, Tye-Din JA. For celiac disease, diagnosis is not enough. Clin Gastroenterol Hepatol 2012;10:900–901.

Read the review article.
Stoven S, Murray J, Marietta E. Celiac disease: advances in treatment via gluten modification. Clin Gastroenterol Hepatol 2012;10:859–862.

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