8 March 2008 National Commission on Digestive Diseases

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8 March 2008
National Commission on Digestive Diseases

c/o the Hill Group

6903 Rockledge Drive, Suite 540

Bethesda, MD 20817

Dear Sirs:
The American Celiac Disease Alliance (ACDA) applauds the National Commission on Digestive Diseases for its work in developing a long-range blueprint for research on digestive diseases at the National Institutes of Health. We appreciate the opportunity to comment on the detailed report, “Opportunities and Challenges in Digestive Diseases Research: Recommendations of the National Commission on Digestive Diseases” and to request consideration of additional areas for research.
The American Celiac Disease Alliance (ACDA) is a non-profit umbrella organization comprised of patient support groups, physicians, research institutions, and others, all of whom are committed to improving the lives of those with celiac disease.
The ACDA strongly supports the following research goals as they relate celiac disease:
Research Goal 1.24: Understand mucosal unresponsiveness (oral tolerance) and mucosal regulatory T cell development. (p. 29; 1318-1326)
Research Goal 4.12: Understand the etiology, natural history, prevention, and management of rare GI cancers. (p. 63; 2917-2927)
Research Goal 8.7: Understand pathogenic mechanisms of celiac disease and autoimmune diseases. (p. 98; 4579-4592)
Research Goal 8.8: Improve screening, diagnosis, prevention, and treatment of celiac disease and of autoimmune and allergic disorders of the bowel. Characterize and define the mechanisms underlying the association of celiac disease with autoimmune and neurological diseases. (p. 99; 4609-4641)
We commend the Commission for acknowledging a number of the challenges to achieving its goals, particularly regarding physician education. Four years after the NIH Consensus Development Conference on Celiac Disease, the condition is still woefully under-diagnosed. Recognition of the condition is gaining, thanks in part to the NIH Celiac Disease Awareness Campaign. We believe these efforts would be enhanced by involving general internists, primary care physicians and pediatricians. These health care professionals are who the patient sees first and where increased education may bring the most significant benefits. (p. 102; 4744 – 4753)
The report is extensive in assessing and identifying areas for future research. However, there are several areas, relating specifically to celiac disease, which merit further review. The ACDA urges the Commission to include the following areas of research as part of the final recommendations:

  1. Celiac disease is associated with an increased mortality and morbidity and impairs the quality of life of individuals with the disease. There is evidence that this applies to celiac disease diagnosed both in childhood and adulthood.

  1. The relationship with many other autoimmune diseases is well established, though the mechanism of the relationship is not well established. There is also evidence that early diagnosis and adherence to the gluten-free diet may result in the development of fewer autoimmune diseases compared to those not adherent to the diet.

  1. Celiac disease as a model for the study of autoimmunity and food intolerances.

  1. There are inadequate studies of the health status of those diagnosed with celiac disease in the United States. The frequency of vitamin and mineral deficiency is not known, Data as to the nutritional status of those diagnosed with celiac disease needs to be obtained. In this line there needs to be data obtained concerning the outcome of children diagnosed with celiac disease as they transition into adulthood. Information is lacking as to the quality of directed health care for this condition. It is not known how many of those with celiac disease are followed by dietitians or nutritionists especially as there is evidence that the gluten-free diet is deficient in specific vitamins and there is evidence that patients become overweight. Patients need to be encouraged to seek care from dietitians or nutritionists with specific knowledge of the disease. It is vital that this point be emphasized in any awareness effort.

s to the quality of health care n of future children diagnosed with celiac diseaseractice that is appare

  1. There need to be studies to explain an apparent increase in prevalence of the disease which could include changes in the diet and specially the nature, and processing of grains that comprise a major part of the diet, for example of the effect of the addition of the enzyme microbial transglutaminase to food, a practice that is apparently increasing one factor that could increase the potential toxicity of gluten.

  1. Efforts should be undertaken to increase the education of physicians (general internists, primary care physicians and pediatricians) and other health care professionals as to the epidemiology, diverse clinical presentations and ease of diagnosis of celiac disease in order to increase the rate of diagnosis of this condition, and decrease subsequent morbidity and mortality.

  1. Further studies need to be performed as to the mechanism of the generation of symptoms in celiac disease, especially as it is apparent that symptoms are not related to the severity of villous atrophy, or the length of bowel involvement.

  1. Collaborative studies between pediatricians and physicians caring for adults, different Centers, the sharing of data bases and serum and cell banks, as stated in the document, applies especially well to the study of celiac disease because there are so few Centers within the country studying the disease.

Although the issue of funding is not within purview of the Commission, it is necessary for those making assessments about research to consider that celiac disease affects roughly one percent of the population and it is under-diagnosed due to a lack of physician awareness about the condition. In addition, there is no course of treatment but the gluten-free diet. In the absence of drug therapy or other medical intervention to treat celiac disease, private sector research funding has not been forthcoming. The ACDA urges the Commission to give consideration to these factors and include the research areas identified above in its final report.

Again, thank you for the opportunity to comment on this report.

Andrea Levario

Executive Director

American Celiac Disease Alliance

2504 Duxbury Place

Alexandria, VA 22308




2504 Duxbury Place • Alexandria, VA 22308 • 703.622.3331 • Email: info@americanceliac.org


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