Introduction to Patient and Disease
According to Hofenberg, McKenzie & Barriga (2003) Celiac disease may affect as much as 1 child in 104 children in the United States and 1 in 99 children in Europe (4). This high prevalence makes celiac disease one of the more common chronic disorders among children.
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Individuals with celiac disease may present mild or atypical symptoms. However, medical awareness of these multiple presentations and diseases associated with gluten-sensitive enteropathy is low and could lead to delays in diagnosis as well as increased risk of complications (Green et al, 2001). Consequently, Hill et al (200) suggested that delay in diagnosis may cause serious nutritional complications that include growth failure, delayed puberty, iron-deficiency anemia, and impaired bone health. Celiac disease has also been associated with other childhood disorders including type 1 diabetes mellitus, autoimmune thyroiditis, Down syndrome, Turner syndrome, and selective immunoglobulin A (IgA) deficiency (6).
Although it is still highly debatable, some investigators proposed that the early diagnosis and treatment of celiac disease could prevent the occurrence of autoimmune disorders associated with celiac disease, such as diabetes and thyroiditis (7).
While the treatment of celiac disease requires strict adherence to a gluten-free diet for life, it is a great challenge for most patients. In fact, this diet can be even more problematic for children as the gluten-free diet may affect the children’s psycho-social well-being (6).
The following data examines research on the clinical presentation, associated disorders, family history, and difficulties in making the diagnosis of celiac disease in children. It will also evaluate the impact of celiac disease and the gluten-free diet on the lifestyles and well-being of children with celiac disease, with close reference to their families.
Hill et al (2005) have suggested that Celiac disease is now recognized with other associated conditions and syndromes. They were able to point out that high-risk populations in which the use of screening has demonstrated a 5% to 12% prevalence of celiac disease include children with type 1 diabetes mellitus, autoimmune thyroiditis, dermatitis herpetiformis, short stature, dental enamel defects, Trisomy 21, Turner’s syndrome, selective IgA deficiency, and those with first-degree relatives with celiac disease. This was similar to the observations of others, this study demonstrated celiac disease to be associated with short stature, dental enamel defects, and type 1 diabetes mellitus, and 8% of the children had at least 1first-degree relative with celiac disease.
Review of Current Research
In a study conducted by Rashid et al (2005) using 168 participants with children aged 2 to 3 years, 4 to 7 years, 8 to 11 years, and 12 to 5 years, patients’ symptoms reported abdominal pain as the most common. Other prominent gastrointestinal symptoms included weight loss, diarrhea, nausea and vomiting, and constipation. Major non-gastrointestinal symptoms included growth failure, extreme weakness, anemia, and mood swings or depression.
Of most children, 96.4% displayed at least 1 symptom while thirty or 18% of children had short stature, 25 (15%) had dental enamel defects, and 13 (8%) had type1diabetes. In addition, the study found eight percent of the children with a first-degree relative with biopsy-confirmed celiac disease (Rashid et al, 2005). Other symptoms not observed in Rashid et al (2005) study that should lead to screening include unexplained hypertransaminasemia, osteopenia/osteoporosis, and neurologic symptoms including epilepsy with occipital calcifications, ataxia, and peripheral neuropathy, as well as delayed puberty (Hill et al, 2005).
Diagnosis and Detection
To have an idea of detection and consultation, the study also established that one quarter (24%) of the families consulted about 2 family physicians, 30% consulted at least 2 pediatricians, and 6% consulted about 2 gastroenterologists before establishing the diagnosis of celiac disease. It added that before the recognition of celiac disease, other diagnoses received by these children included anemia (15%), irritable bowel syndrome (11%), gastroesophageal reflux (8%), stress (8%), and peptic ulcer disease (4%). The study also found that the median time between the onset of symptoms and the diagnosis of celiac disease was 1 year (Rashid et al, 2005).
Korman (1990) suggested that celiac disease has been regarded as a malabsorptive condition that results in weight loss in adults and in failure to thrive in children. In the study conducted, patients showed substantial differences in BMI at the time of diagnosis. One-half of the patients were underweight; yet a substantial minority was overweight, and some were even obese. In addition, the differences may be accounted for by differences in the amount of small intestine affected by the disease (Korman, 1990). Many of those who were obese at diagnosis lost weight on the gluten-free diet relating it to micronutrient deficiencies that may have driven specific food cravings, as occurs in pica, which has been reported in iron-deficient children with celiac disease.
It was also noted in the Korman (1990) study that the high frequency of abdominal pain was unexpectedly contributing to the misery of patients with untreated celiac disease. The study further suggested the relation of pain to meals wherein a maldigestion component to the pain exists. Abdominal pain was found to be more common in those who tested positive for Helicobacter pylori than in those who did not among children with celiac disease. While the abdominal pain resolved with the gluten-free diet, it was suggested that a combination of celiac disease and the effects of H.pylori infection caused the pain.
Korman (1990) stressed that the variety of symptoms experienced by patients proven to have celiac disease is a major impediment to diagnosis. Symptoms such as irritable bowel syndrome are non-specific and are more often seen as manifestations of other diseases.
Nevertheless, the study noted that the dramatic response of these symptoms to restriction of dietary gluten implies that those symptoms were not due to a coexistent irritable bowel syndrome. In addition, the frequent misdiagnosis of irritable bowel syndrome in patients with celiac disease has been presumed to be due to a low degree of suspicion for celiac disease as well as to the erroneous assumption that abdominal pain is a rare symptom in celiac disease.
Treatment and Gluten-Free Diet
Walker-Smith and Murch (1985) demonstrated an increasing age of presentation of children with celiac disease throughout Europe with reasons not known. The authors speculated that this trend is caused by several factors that may include breastfeeding to an older age, delayed introduction of gluten-containing foods into the infant’s diet, and the use of screening tests in high-risk populations. As Hill et al (2005) suggested, older children present a wide variety of atypical symptoms for which the indications for celiac disease screening have been broadened.
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All participants of the Rashid et al (2005) study were advised to follow a gluten-free diet for life. The families apparently were members of the Canada Celiac Association. All received information on celiac disease and the gluten-free diet from the association. Dietitians also provided information to 90%, gastroenterologists to 80%, and family physicians to 32% of the patients and families. It was pointed out that the perceived quality of information received varied depending on the source. Sixty-three percent of individuals who responded felt that the information supplied by the CCA was excellent. In addition, gastroenterologists provided excellent information to 44%, dietitians to 36%, and the family physician to 11.5% of the respondents (Rashid et al, 2005).
Rashid et al (2005) provided that almost all (95%) of the respondents adhered to a strict gluten-free diet, and only 4% felt that they could be healthy without their gluten-free diet (Table 2). 89% noted a significant improvement in health. However, the accidental consumption of gluten triggered reactions in 91 (54%) children varying from abdominal discomfort (87%), diarrhea (64%), bloating (57%), fatigue (37%), headache (24%), and constipation (8%), and most displayed at least 1 symptom. The reaction time from ingestion of gluten to development of the first symptom ranged from 25 minutes to 60 hours with the medians 2.0hours.
The responses when asked about how they felt during the past year and how the gluten-free diet affected them and their family, are listed in Tables 2 and 3. 63% of the children felt left out of social activities to some degree, but only 13% considered celiac disease to be a major disruption in their social life, and 11% felt all or most o the time that teachers and friends did not understand their disease. Twenty-three percent were angered for most of the time about following a gluten-free diet while restaurants were avoided all or most of the time by 54%. About 15% avoided traveling all or most of the time, and during travel, 83% brought gluten-free food with them all of the time.
In addition, twenty-eight percent of the respondents found it extremely difficult to locate stores with gluten-free foods, and 27% reported that all or most of the time they found it difficult to determine if a food was free of gluten by reading the label (Rashid et al, 2005).
When the participants were asked to select 2 items from the questionnaire that they felt would improve their quality of life, better labeling of gluten-containing ingredients was selected by 63% of the respondents. More gluten-free foods in the supermarket by 49%, and gluten-free choices on restaurant menus by49% were also selected. Likewise, earlier diagnosis of celiac disease was selected by 34%, and better dietary counseling by 7% (Rashid et al, 2005).
The pediatric data of the CCA’s Health Survey examined is the largest of its type to be completed on Canadian and perhaps North American children with celiac disease (Rashid et al, 2005).
The lack of awareness about atypical or mild presentations of celiac disease among health professionals has contributed to delayed diagnosis (Hill et al, 2005). Rashid et al’s (2005) findings indicate that at least one-quarter of these children had consulted at least 2 family physicians or pediatricians and received multiple alternative diagnoses before the diagnosis of celiac disease. It was noted that screening tests for celiac disease became available only recently in Canada and are still not available in all provinces. Serological screening of some type was used as a diagnostic aid by physicians, as evidenced by the 70% screening rate reported by families.
Guidelines on the screening and diagnosis of celiac disease were published by the North American Society of Pediatric Gastroenterology, Hepatology and Nutrition and the National Institutes of Health. This provided excellent resources to educate physicians about the myriad of presentations of celiac disease and appropriate diagnostic strategies (Hill et, 2005).
Also, in a study conducted by Jackson et al (1985), 54% of the children reported asymptomatic reaction within 0.5 to 60 hours after the ingestion of a gluten-containing product. The negative reinforcement after the ingestion of gluten likely contributed to the high level of compliance observed. In a study that examined symptoms of older non-compliant adolescents, 65% ignored celiac disease-associated symptoms (Mayer et al, 1991).
Dietary compliance is also higher in families in which knowledge about celiac disease is better and in families that belong to a celiac association (Jackson et al, 1985). In Rashid et al’s study (2005), all families belonged to the CCA, and all were informed that celiac disease required lifelong adherence to a strict gluten-free diet. In addition, almost all were referred to a dietitian. The families reported that the CCA was the best source of information about the gluten-free diet.
Also, gastroenterologists, dietitians, and family physicians provided excellent information to 50% of those instructed. This indicates the importance of obtaining a biopsy to diagnose celiac disease. Provision of excellent education about the disease and a gluten-free diet will encourage optimal dietary compliance. The studies suggested that better strategies to ensure compliance in screening-detected children with celiac disease need to be developed, and education of health care professionals about the treatment of celiac disease and the gluten-free diet needs to be improved.
Rashid et al (2005) noted that the data regarding dietary compliance were reported primarily by parents. Kolsteren et al (2001) found that the overall quality of life in a small number of European children with celiac disease to be the same as the general population. Celiac disease-specific questions were included in the European study as a supplement to generic quality of life (Kolsteren et al, 2001).
As established, increased awareness and education about celiac disease, as well as better availability of gluten-free foods, helps to improve the child’s and family’s adjustment to this chronic disease (Jackson et al, 1985). Physical symptoms are usually resolved once a gluten-free diet is initiated. In addition, it was suggested that health professionals need to appreciate the emotional and psychosocial hurdles faced by children with celiac disease.
It was pointed out that children who develop difficulties in adapting to their disease need to be identified so that well-trained volunteers and professionals who are familiar with the complexities of celiac disease and the gluten-free diet may provide support. In addition, the food industry must make gluten-free foods more available in restaurants and stores. Governments also need to pass legislation that mandates improved labeling to identify hidden sources of gluten in foods (Rashid et al, 2005).
Recent studies found that celiac disease is one of the most common chronic diseases affecting North American children. It is considered a true clinical challenge with affected children presenting a myriad of symptoms at a variety of ages. While celiac disease screening tests are available, even excellent ones such as the IgA tissue transglutaminase or IgA endomysial antibody tests, many family physicians and pediatricians still have difficulty in making the diagnosis. As the studies suggest, definitive tests must be made available and that intestinal biopsy still is necessary to confirm the diagnosis.
It is also necessary to inform patients and their families of the importance of compliance with a gluten-free diet to prevent the complications that occur later in life. Complications should be stressed and these include chronic nonspecific gastrointestinal complaints, refractory iron-deficiency anemia, infertility, osteoporosis, intestinal lymphoma, and possibly the development of other autoimmune diseases. To improve compliance, ongoing education and support to children with celiac disease and their families must be supported. Likewise, volunteers and health professionals must be properly trained to provide appropriate education and support. But more important is the availability of gluten-free foods to patients, as well as legislation to identify hidden sources of gluten among food labels.
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