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Recommendations Summary

CD: Monitoring and Evaluation of Factors Affecting Quality of Life 2009

Click here to see the explanation of recommendation ratings (Strong, Fair, Weak, Consensus, Insufficient Evidence) and labels (Imperative or Conditional). To see more detail on the evidence from which the following recommendations were drawn, use the hyperlinks in the Supporting Evidence Section below.


  • Recommendation(s)

    CD: Monitoring and Evaluation of Factors Affecting Quality of Life

    The registered dietitian (RD), at every encounter,  should monitor and evaluate the factors affecting the quality of life of individuals with celiac disease, reviewing changes in client status, which includes medical status (e.g., gastrointestinal, immune, neurological and psychological) and social status (e.g., socioeconomic factors, religion, social and medical support and daily stress level). Individuals with celiac disease may not attain the same level of quality of life as the general population, due to social inconveniences of following a gluten-free dietary pattern.

    Rating: Strong
    Imperative

    • Risks/Harms of Implementing This Recommendation

      None.

    • Conditions of Application

      None specified.

    • Potential Costs Associated with Application

      Although costs of medical nutrition therapy (MNT) sessions and reimbursement vary, MNT sessions are essential for improved outcomes.

    • Recommendation Narrative

      • Individuals with celiac disease demonstrate improved quality of life after compliance with a gluten-free dietary pattern for at least one year (Hallert et al, 1998; Green et al, 2001; Hallert et al, 2002; Mustalahti et al, 2002; Hallert et al, 2003; Johnston et al, 2004; Viljamaa et al, 2005)
      • Those who have been symptom-detected rather than screen-detected demonstrated greater improvement in quality of life
      • Individuals with celiac disease may not attain the same level of quality of life as the general population, due to social inconveniences of following a gluten-free dietary pattern; these issues are reported more frequently by women than men (Ciacci et al, 2002; Usai et al, 2002; Ciacci et al, 2003; Fera et al, 2003; Lee and Newman, 2003; Rashid et al, 2005; Zarkadas et al, 2006)
      • Those with persistent gastrointestinal symptoms, despite adherence to a gluten-free dietary pattern, also did not attain quality of life comparable to the general population
      • Several studies have reported that people with celiac disease (treated and untreated) are more likely to experience gastrointestinal symptoms such as diarrhea, constipation, abdominal pain and bloating, nausea or vomiting, reduced gut motility and delayed gastric emptying than healthy controls (Cucchiara et al, 1995; Usai et al, 1995; Chiarioni et al, 1997; Fine et al, 1997; Benini et al, 2001; Cuomo et al, 2003; Midhagen et al, 2003; Tursi et al, 2003; Murray et al, 2004; Hopper et al, 2005; Viljamaa et al, 2005; Casellas et al, 2006)
      • Compliance with a gluten-free diet reduces the prevalence of these symptoms
      • Further evaluation of persistent gastrointestinal symptoms in some persons with celiac disease is recommended. Evidence is limited regarding the effect of a gluten-free dietary pattern on indigestion, dysphagia and reflux; additional research is needed in these areas.
      • Several studies have reported that people with celiac disease are more likely to experience neurological symptoms such as depression, cerebellar ataxia, headaches and migraines and neuropathy than healthy controls (Bushara et al, 2001; Hadjivassiliou et al, 2001; Kieslich et al, 2001; Volta et al, 2002; Gabrielli et al, 2003; Luostarinen et al, 2003; Zelnik et al, 2004; Briani et al, 2005; Ihara et al, 2006)
      • Early diagnosis and compliance with a gluten-free dietary pattern may reduce the prevalence of symptoms related to cerebellar ataxia, headaches and migraines.
      • Six studies report that compliance with a gluten-free dietary pattern has not been shown to have an effect on depressive symptoms (Ciacci et al, 1998; Addolorato et al, 2001; Cicarelli et al, 2003; Addolorato et al, 2004; Siniscalchi et al, 2005). One study suggests that this may relate more to family history of depression (Pynnonen et al, 2004).
      • Evidence is less conclusive and limited regarding the effect of a gluten-free dietary pattern on epilepsy, anxiety, regional cerebral perfusion, hypotonia, learning disorders and disruptive behavior disorders; additional research is needed in these areas.
      • Clinical trials and cross-sectional studies have reported reduced bone mineral content and bone mineral density in untreated children, adolescents and adults with celiac disease; both of these parameters improve significantly with compliance to a gluten-free dietary pattern for at least one year
      • Compliance with dietary treatment initiated during childhood or adolescence allows achievement of a normal bone mineralization (Rea et al, 1996; Scotta et al, 1997; Mora et al, 1998; De Lorenzo et al, 1999; Kalayci et al, 2001; Mora et al, 2001; Szathmari et al, 2001; Carbone et al, 2003; Kavak et al, 2003; Sdepanian et al, 2003; Barera et al, 2004; Hartman et al, 2004; Tau et al, 2006)
      • However, studies in untreated adults have shown that a gluten-free dietary pattern improves but may not normalize bone mineral density: Successful treatment depends on the age at diagnosis, as patients who do not receive treatment in childhood and adolescence may never reach peak bone mass (Corazza et al, 1995; McFarlane et al, 1995; Molteni et al, 1995; Walters et al, 1995; Corazza et al, 1996; McFarlane et al, 1996; Valdimarsson et al, 1996; Bai et al, 1997; Ciacci et al, 1997; Kemppainen et al, 1999; Mora et al, 1999; Bardella et al, 2000; Sategna-Guidetti et al, 2000; Valdimarsson et al, 2000; Vazquez et al, 2000; O'Leary et al, 2004; Pazianas et al, 2005; Viljamaa et al, 2005)
      • Further studies are needed regarding the effects of calcium and vitamin D supplementation on bone mineral content and bone mineral density, as well as hormone replacement therapy for post-menopausal women (McFarlane et al, 1995; Pistorius et al, 1995; Walters et al, 1995; Bai et al, 1997; Sategna-Guidetti et al, 2000)
      • For most children and adults with celiac disease, studies report that compliance with a gluten-free dietary pattern results in significant improvements in hematological parameters, including serum hemoglobin, iron, ferritin, mean corpuscular volume, mean corpuscular hemoglobin and red cell distribution width (Rea et al, 1996; Annibale et al, 2001; Mitchell and Robinson, 2002; Kapur et al, 2003; Patwari et al, 2003; O'Leary et al, 2004; Rashid et al, 2005; Masjedizadeh et al, 2006; Poddar et al, 2006)
      • Recovery of anemia (normalization of hemoglobin concentrations) generally occurs within six months, while recovery from iron deficiency (normalization of ferritin concentrations) may take longer than one year. Iron supplementation in the form of a multivitamin with iron or additional therapeutic doses of iron may be necessary to achieve normal values of these hematological variables within these time periods.
      • Several studies report that individuals who are compliant with a gluten-free dietary pattern have substantial improvement in villous atrophy. However, mucosal abnormalities may persist in some individuals.
      • Normalization of abnormalities may occur within one year, but generally takes longer, depending on the severity of villous atrophy, level of dietary compliance and age at diagnosis (Dickey et al, 2000; Kaukinen et al, 2002; Lee et al, 2003; Abrams et al, 2004)
      • One study indicated that recovery in children may progress faster and more completely than in adults (Wahab et al, 2002)
      • Several studies report that improvement in villous atrophy is not dependent on the type of gluten-free dietary pattern; however, villous atrophy is significantly associated with dietary compliance (Janatuinen et al, 1995; Kemppainen et al, 1998; Kaukinen et al, 1999; Selby et al, 1999; Lohiniemi et al, 2000; Janatuinen et al, 2000; Ciacci et al, 2002; Janatuinen et al, 2002; Peraaho et al, 2003; Hogberg et al, 2004; Peraaho et al, 2004; Baudon et al, 2005; Ciacci et al, 2005)
      • Further research is needed to determine the factors involved with the persistence of mucosal abnormalities in those adhering to a gluten-free dietary pattern
      • Several cohort and case-control studies have reported that women with undiagnosed or untreated celiac disease have an increased risk of spontaneous abortion and miscarriage, low birth weight and small-for-gestational-age newborns, stillbirth, perinatal disease and mortality, low Apgar scores, delayed menarche and early menopause, premature delivery, intrauterine growth retardation, breech presentation and Cesarean delivery, while compliance with a gluten-free dietary pattern results in risks similar to those of healthy controls (Ciacci et al, 1996; Sher et al, 1996; Smecuol et al, 1996; Norgard et al, 1999; Martinelli et al, 2000; Greco et al, 2004; Kotze, 2004; Ciacci et al, 2005; Ludvigsson et al, 2005; Sheiner et al, 2005; Tata et al, 2005)
      • Despite the increased risks of complications, the overall number of pregnancies does not appear to be influenced by celiac disease
      • Evidence is limited in the areas of fertility, breast-feeding duration, threatened abortion, secondary amenorrhea and labor induction; further research is needed in these areas.

    • Recommendation Strength Rationale

      Conclusion statements received Grades I and II.

    • Minority Opinions

      Consensus reached.