The epidemiology of CD has changed dramatically over the past 20 years. Recognition of the myriad clinical presentations of this autoimmune disorder and the need to screen for CD in the presence of risk factors has led to an increased prevalence reported in North America, from one in 10,000 in 1994 to one in 111 individuals in 2000 (1
) – an astounding difference! In addition, there has been a shift upward in the age of CD diagnosis (6
). While the classical presentation of CD was a readily identifiable child younger than two years of age, with flat buttocks, a protuberant abdomen and muscle wasting, this is no longer the contemporary presentation.
CD is common, and without treatment confers significant morbidity and risk of mortality. CD patients have two times the mortality rate of the general population (7
). However, after implementing a GFD, CD patients may decrease their mortality to levels comparable with the general population. The longer a patient is exposed to gluten, the higher the risk of being affected by gastrointestinal malignancy, osteoporosis and other autoimmune disorders (8
). Early diagnosis of CD in childhood allows for an early start to a GFD, leading to a higher likelihood of compliance as well as decreasing the risk of future complications such as osteoporosis. Indeed, accrual of bone mass is a critical issue for growing children and compliance with a GFD is associated with normalizing bone mass in children, but less clearly so for adults diagnosed with CD (11
). In addition, quality of life may be improved by early diagnosis of CD (13
). Importantly, these statements appear to apply equally to patients with or without symptoms at diagnosis (14
). In this regard, our findings of similarly decreased bone mass in young children at diagnosis of CD, independent of symptomology, and of self-reported improvement in sense of well being, even in children who were initially asymptomatic, are noteworthy.
Our study shows a dramatic increase in the frequency of diagnosis of CD at Stollery Children’s Hospital over the nine years studied. Although it is possible that some children with CD were diagnosed elsewhere in northern Alberta during the time of the present study, it is likely a very small number and would not be expected to change the significant temporal trend. The increase in diagnoses over time is related to an increase in the screening of high-risk groups. By increasing awareness of the myriad presentations of CD, including screening of high-risk groups, we can make an early diagnosis and implement appropriate treatment to decrease complications. This is important to decrease both childhood morbidity and late complications, and because long-term compliance with a GFD may be improved by early diagnosis.
Another factor accounting for the increased prevalence of CD may be the recent availability of high-quality and cost-effective screening tools. The introduction of the ATTG blood test, 10 to 15 years previously, has allowed family physicians and pediatricians to more accurately screen their patients before referring them to a gastroenterologist. Another contributing factor would be the increase in the local population of Northern Alberta. Although the population of children one to 18 years of age in the health region of interest increased steadily from 234,825 in 1998, to 241,506 in 2007, it is unlikely to have accounted for the dramatic rise in CD diagnoses observed.
Our study has demonstrated the importance of diagnosing CD. It is a chronic disease that affects patients’ nutrition, bone mass and overall health. It is especially important to diagnose individuals during childhood. Importantly, both asymptomatic and symptomatic patients experience an improvement in their overall well being. In addition, most of our patients’ symptoms were completely resolved, while the asymptomatic patients noted a meaningful improvement. Nevertheless, the identification of CD in the population clearly requires further improvement because we continue to diagnose symptomatic patients at twice the rate of asymptomatic patients.
A new factor that will impact the diagnosis of CD in our communities is the availability of the over-the-counter ‘Biocard Celiac Test’ (ANI Biotech, Finland) – a home ATTG test kit for CD. This fingertip blood sample test provides a screening result for CD within 10 min. This will lead to an increased awareness and diagnosis of CD that will call for more resources to be made available. In particular, resources will need to be allocated to the education of families and doctors on the need to confirm a diagnosis of CD with a small bowel biopsy before commencing a GFD. Timely access to a small bowel biopsy will be a major factor in ensuring an accurate diagnosis of CD.
The ease and availability of screening tools for CD, along with the rising awareness of silent and atypical symptoms of this disease, will result in a greater portion of the population constituting the submerged part of the ‘iceberg’ being diagnosed. As we start chipping at the iceberg, we will need to have the resources in hand to manage the increasing prevalence of CD.