Long-Term Follow-Up of Celiac Adults on Gluten-Free Diet: Prevalence and Correlates of Intestinal Damage

Abstract

Background and Aims: Celiac disease is the most common severe food intolerance in the Western world and is due to gluten ingestion in genetically susceptible children and adults. Intestinal biopsy is the golden standard for evaluation of mucosal damage associated with celiac disease. Gluten-free diet is the key treatment for celiac disease. Data on the long-term control of celiac disease are few and limited to small series of patients. The study reports data on the control of celiac disease and on its correlates in a large cohort of celiac adults during long-term treatment with gluten-free diet. Methods: The study cohort comprises 91 men and 299 women having undergone treatment with a gluten-free diet for at least 2 years and with complete records for visits at the time of diagnosis of celiac disease (baseline). Data collection included gender, age, education, weight, bowel habit, blood hemoglobin, plasma albumin and cholesterol, serum antiendomysium antibodies (EMA), dietary compliance to gluten-free diet (coded as good, low, or very low), and intestinal damage at biopsy (coded as absent, mild, or severe). Results: The duration of follow-up was 6.9 ± 7.5 years (mean ± SD, range 2–22 years). At follow-up visit, intestinal damage was absent in 170 patients (43.6%), mild in 127 (32.6%), and severe in 93 (23.8%). At follow-up, intestinal damage was significantly associated with dietary compliance, EMA, and plasma albumin (follow-up value and change value from baseline to follow-up). Baseline education significantly predicted dietary compliance and intestinal damage at follow-up. Conclusions: Celiac disease is often poorly controlled in the majority of patients on long-term treatment with a gluten-free diet as demonstrated by intestinal biopsy. Lack of adherence to strict gluten-free diet is the main reason of poorly controlled disease in adults. Laboratory and clinical information have a high positive predictive value and low negative predictive value for intestinal damage on long-term treatment. Dietary compliance as assessed by interview is the best marker of celiac disease control due to low cost, noninvasivity, and strong correlation with intestinal damage.

Factors that Influence Adherence to a Gluten-Free Diet in Adults with Celiac Disease

“…Fewer than 50% of adults with CD studied in France and Belgium strictly adhered to a GFD for more than one year after being diagnosed [27]. Similarly, Ciacci et al, in a long-term follow-up study of adults with CD, found that 24% were nonadherent and had severe intestinal damage, while 33% were mildly nonadherent and had milder intestinal damage [17]. Our study population was similar in that fewer than 50% of participants had excellent GFD adherence according to the nutritionist assessment.…”

“…Rates of strict adherence to a GFD in adults have been found to vary between 17% and 45% [16,17,25,26]. Fewer than 50% of adults with CD studied in France and Belgium strictly adhered to a GFD for more than one year after being diagnosed [27].…”

“…However, the questionnaires have not been validated, and self-reporting has been shown to be inaccurate [32]. Conversely, trained nutritionist evaluation shows a high correlation with intestinal biopsy abnormalities [17]. Reliable information on the factors that influence GFD adherence is crucial to enable the design of interventions aimed at improving GFD adherence and thereby the health outcomes of individuals with CD.…”

“…However it is not clear if biopsy provides a better assessment of long-term adherence than nutritionist evaluation. In fact, prior studies showed only a modest correlation of histology with clinical presentation or assessed dietary adherence [17,33]. Although for brevity, in the nutritionist evaluation found in Appendix 1, only frequency is noted, the evaluation was designed to be standardized, dynamic, and comprehensive.…”

“…Despite the proven benefits of the GFD, it can be exceedingly difficult to completely avoid gluten-containing foods, and adherence to a GFD is estimated to be only 45-80% [16,17]. Comprehensive understanding of the factors associated with optimal GFD adherence is needed to develop strategies and resources to assist individuals with CD maintain a GFD.…”