1. Meize-Grochowski, Robin RN, PhD

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The National Institutes of Health (NIH) Consensus Development Conference on Celiac Disease, held June 28-30, 2004, moved celiac disease from relative obscurity to the forefront of discussion in both the scientific and public communities. The flurry of press releases and news articles following the conference attests to this. The interest in celiac disease by the mainstream media will likely subside, but the scientific work must continue with greater intensity and funding. One large part of this work is to increase awareness of the disease and its management among all healthcare providers.

FIGURE. Robin-Meize-... - Click to enlarge in new windowFIGURE. Robin-Meize-Grochowski, RN, PhD

By the nature of their work setting, gastroenterology nurses are in a key position to educate persons with celiac disease on ways to manage the disease and its manifestations. They may find themselves in the position of advocating for patients, while at the same time educating physician and nurse colleagues about this disease.


Like other NIH consensus development conferences, this meeting was convened to evaluate the scientific information and address controversial issues in clinical practice for celiac disease (NIH, 2004, About the Consensus Program), but this meeting was more than just another scientific session. It was the culmination of many years of hard work by individuals personally touched by celiac disease, as well as by dedicated scientists and physicians working with often limited funding in order to better understand and manage this widely under-recognized chronic disease.


One study in particular undoubtedly pushed celiac disease into the limelight. In a large epidemiological study of at-risk and not-at-risk groups in the United States (N = 13,145), Fasano et al. (2003) reported a 1:133 prevalence of celiac disease in the general population. The prevalence was 1:22 in first degree relatives, 1:39 in second degree relatives, and 1:56 in symptomatic individuals. These results were much higher than reported in previous studies, making celiac disease one of the most common immune-mediated disorders in the United States.


Although nearly 1% of the U. S. population may have celiac disease, the majority of individuals have not been diagnosed (NIH, 2004, Final Statement, Introduction, para. 2). Green and colleagues (2001) noted a long duration of symptoms before diagnosis (average of 11 years); however, symptoms may actually be present in individuals for years before medical treatment is sought. Although celiac disease is typically associated with gastrointestinal symptoms (eg, diarrhea, constipation, bloating), it manifests more commonly without symptoms or with extra-intestinal complaints. These range from subjective complaints of fatigue and depression to objective findings of anemia and osteoporosis. Celiac disease also has an increased prevalence with other disorders (eg, Type 1 diabetes mellitus, autoimmune disorders, Down syndrome) (NIH [2004]. Final statement: How prevalent is celiac disease? para. 2). It is no wonder patients, families, scientists, and healthcare professionals have rallied to give celiac disease a voice.


During the 3-day conference, an independent panel made up of representatives from the scientific and lay communities listened to scientific presentations and public testimony on celiac disease. Following an executive session to consider the information presented, the panel prepared a final consensus statement. On the 3rd day of the conference, the statement was circulated to the audience for comment. The following key questions were addressed in the statement:


1. How is celiac disease diagnosed?


2. How prevalent is celiac disease?


3. What are the manifestations and long term consequences of celiac disease?


4. Who should be tested for celiac disease?


5. What is the management of celiac disease?


6. What are the recommendations for future research on celiac disease and related conditions? (NIH, 2004, Final Statement, Introduction, para. 5)



The panel summarized six key elements in the management of individuals with celiac disease (NIH, 2004, Final Statement) as follows:


* C onsultation with a skilled dietitian


* E ducation about the disease


* L ifelong adherence to a gluten-free diet


* I dentification and treatment of nutritional deficiencies


* A ccess to an advocacy group


* C ontinuous long term follow up by a multidisciplinary team



Although nurses were not listed as part of the NIH Consensus Conference planning committee, speakers, or panel, we must now join the ranks to give voice to a disease that may not necessarily be silent, but rather under-diagnosed. Nurses are there during intake interviews, diagnostic workups, primary care settings, emergency departments, hospitals, outpatient clinics, and any other place patients may be found. Nurses are also family members, neighbors, and friends of individuals seeking advice for a variety of health complaints. It is imperative that nurses become knowledgeable about this disease and its management to become full members of the multidisciplinary team required to manage celiac disease.


Celiac disease will be explored in detail in a future issue of Gastroenterology Nursing. In the meantime, go to the NIH website and read the final statement. Get a jump start on learning more about a disease that affects nearly 3 million Americans (NIH, 2004, Final Statement).




Fasano, A., Berti, I., Gerarduzzi, T., Not, T., Colletti, R. B., Drago, S., et al. (2003). Prevalence of celiac disease in at-risk and not-at-risk groups in the United States. Archives of Internal Medicine, 163, 286-292. [Context Link]


Green, P. H. R., Stavropoulos, S. N., Panagi, S. G., Goldstein, S. L., McMahon, D. J., Absan, H., & Neugut, A. I. (2001). Characteristics of adult celiac disease in the USA: Results of a national survey. American Journal of Gastroenterology, 96, 126-131. [Context Link]


NIH (2004). Final statement. NIH consensus development conference statement-Celiac disease, June 28-30, 2004. Retrieved August 10, 2004 from[Context Link]


NIH (2004). NIH consensus development program website. About the consensus program: Frequently asked questions. Retrieved June 30, 2004 from[Context Link]