Erica Hopman

Nutritional management of the gluten-free diet in young people with celiac disease in The Netherlands

Background: For young people with celiac disease, adherence to the gluten-free diet may be difficult to achieve and gluten restriction may lead to insufficient nutrient intake and unbalanced food intake resulting in overweight. In The Netherlands, no nutritional information is available. Therefore, we evaluated the nutritional management and nutritional state in young celiac patients. Methods: The Dutch Celiac Society invited all its members aged 12 to 25 years to complete a food record and a questionnaire. Nutrient intakes were compared with the recommendations and the intake in the general population. Total immunoglobin A, endomysial antibody, tissue transglutaminase and IgA gliadin were determined, and height and weight were assessed. Results: Strict dietary compliance was reported by 75%. The fiber and iron intakes were significantly lower, and the saturated fat intake significantly higher than recommended but comparable with the general population. Most of the patients (61%) found the diet easy to follow. Regular medical controls were reported by 86% but regular dietary controls by only 7% of the patients. Mean and SD scores for height and body mass index were −0.3 ± 1.1 and −0.3 ± 0.8, respectively. Conclusions: The dietary compliance in this group is high, the nutritional state is adequate, but the nutrient intake is not. Better medical and dietary support is necessary to prevent long-term complications and to achieve an ongoing satisfying management in this group of young patients with a chronic disorder.

Dietary compliance and health-related quality of life in patients with coeliac disease.

Background and objective Coeliac disease is treated with a lifelong gluten-free diet (GFD). The aim of our study was to investigate whether the dietary (nondietary) compliance is associated with health-related quality of life (HRQoL) of coeliac patients. Methods Patients from our hospital, known with coeliac disease for more than 10 years, were invited to participate in a study on possible gluten tolerance. HRQoL was assessed by the Short Form-36 health survey, symptoms by the Gastrointestinal Symptom Rating Scale and dietary compliance by a food frequency questionnaire. HRQoL of coeliac patients was compared with that of the general population. Results Fifty-three biopsy-confirmed coeliac patients were divided into three groups according to gluten consumption: GFD (n = 33), gluten transgression (<10 g gluten/day; n = 8) and normal gluten-containing diet (>10 g gluten/day; n = 12). Compared with the general population, coeliac patients scored significantly worse on general health perception but significantly better on bodily pain and limitations due to physical problems. The results of the Gastrointestinal Symptom Rating Scale and the Short Form-36 health survey were similar in all three dietary groups. Conclusion Although adhering to the GFD is strictly important to prevent future complications, patients who stop following GFD do exist and patients with partial or nonadherence report similar HRQoL compared with patients with strict adherence in this group of adult coeliac patients.

Tef in the diet of celiac patients in The Netherlands

Objective. Celiac disease (CD) is a multifactorial disease with a strong genetic association. It is caused by a T-cell-mediated immune response to wheat gluten. The treatment is a strict gluten-free diet (GFD). The purpose of this study was to investigate whether the naturally gluten-free cereal Eragrostis tef (tef) is associated with health problems when used by CD patients. Material and methods. In March 2006, all 7990 members of the Dutch Celiac Disease Society were invited to complete a questionnaire on tef use and the development of symptoms after tef consumption. Respondents and their family members willing to participate were sent an extended questionnaire on the use of commercially available tef products and on the character of their subsequent symptoms. Results. Thirty-six percent responded to the first questionnaire of whom 53% consumed tef and 15% reported complaints. For the second questionnaire, out of the 1828 participants willing to complete it, 1545 had biopsy-proven CD (median duration GFD: 6.5 years (range: 0–66.5 years)). Of these, 66% used tef (median duration 1.4 years (range: 0.1–5 years)) and 17% reported symptoms after consumption. The percentage for symptoms was significantly lower than that in patients without tef consumption reporting on their regular GFD (17% versus 61%; p=0.0001). Conclusions. Tef is frequently used by Dutch CD patients and a wide majority can consume tef without experiencing any clinical symptoms. CD patients using tef reported a significant reduction in symptoms, possibly related to a reduction in gluten intake or to an increase in fiber intake. Hence, tef can be a valuable addition to the GFD of CD patients.

Gluten tolerance in adult patients with celiac disease 20 years after diagnosis

Background and objective Celiac disease (CD) is believed to be a permanent intolerance to gluten. A number of patients, however, discontinue the gluten-free diet (GFD) without developing symptoms or signs. The aim of our study was to investigate whether CD patients are capable of developing tolerance to gluten. Methods All 77 adult patients from our hospital known to have biopsy-proven CD for more than 10 years were invited to participate. We investigated symptoms, gluten consumption, antibodies for CD and other autoimmunity, human leukocyte antigen (HLA)-typing, bone mineral density, and performed small bowel biopsies. Tolerance was defined as no immunological or histological signs of CD while consuming gluten. Results Sixty-six patients accepted participation, but after review of the diagnostic biopsies 53 were found to have true CD. Twenty-three percent of patients had a gluten-containing diet, 15% admitted gluten transgression and 62% followed the GFD. Patients on a GFD had significantly more osteoporosis. Normal small bowel mucosa was found in four of eight on gluten-containing diet and in four of four with gluten transgression. Two patients were considered to have developed tolerance to gluten. One of them was HLA-DQ2/DQ8 negative. Conclusion Development of tolerance to gluten seems possible in some patients with CD. Further follow-up will show whether this tolerance is permanent or only a long-term return to latency. This feature may be associated with genetic characteristics, especially with HLA genotypes that differ from DQ2 or DQ8. More insight into the mechanisms of the development of gluten tolerance may help to distinguish those CD patients that might not require life-long GFD.

Eating Habits of Young Children with Down Syndrome in The Netherlands: Adequate Nutrient Intakes but Delayed Introduction of Solid Food

OBJECTIVES To investigate nutritional status, pattern of being breast-fed, age at introduction of solid food, and adequacy of energy and nutrient intakes in children with Down syndrome in The Netherlands. DESIGN Nutritional status was assessed by height and weight measurements. The dietary history method was used to collect information on the diet. Data obtained from children with Down syndrome were compared with data from control subjects and from the general population of Dutch children. Adequacy of energy and nutrient intakes was assessed by comparison to US recommendations. SUBJECTS Forty-four Dutch children with Down syndrome (newborns to 4-year-olds) and 37 healthy control subjects without this syndrome. STATISTICAL ANALYSES The prevalence of breast-feeding of children with and without Down syndrome was compared using the chi 2 test. To compare ages at which solid food was introduced, the log-rank test and Kaplan-Meier curves were used. Anthropometric data and mean dietary intake were compared between the groups using 2-way analysis of variance. Comparison to recommended levels of dietary intake was performed using 95% confidence intervals. RESULTS Heights and weights of the children with Down syndrome were in the normal range. Down syndrome does not affect the prevalence of breast-feeding of children or the adequacy of their energy and nutrient intakes, but it does significantly delay the age at which solid food is introduced, which can be deleterious to oral-motor development. APPLICATION If late introduction of solid food is observed in children with Down syndrome, pre-speech therapy should be considered.

E-Healthcare for Celiac Disease-A Multicenter Randomized Controlled Trial

Objective To evaluate the (cost‐)effectiveness of online consultations in follow‐up of patients with celiac disease (CD). Study design Multicenter randomized, controlled trial involving 304 patients aged ≤25 years with CD for ≥1 year, randomized to an online (n = 156) or outpatient consultation (n = 148). An online consultation included questionnaires for symptom and growth measurement. Antitransglutaminase‐type‐2 antibodies were determined using a point‐of‐care (POC) test. Controls had a traditional consultation with antitransglutaminase‐type‐2 antibodies testing in laboratories. Both groups completed questionnaires concerning CD‐specific health‐related quality of life (HRQOL), gluten‐free diet adherence, and patient satisfaction. Six months later, participants repeated HRQOL and patient satisfaction questionnaires and the POC test. The primary outcome was anti‐transglutaminase‐type‐2 antibodies after 6 months, and the secondary outcomes were health problems, dietary adherence, HRQOL, patient satisfaction, and costs. Results The performance of the POC test was inferior to laboratory testing (2/156 positive POC tests vs 13/148 positive laboratory tests; P = .003). Health problems were detected significantly more frequently using online consultation. The detection of growth problems and dietary transgressions was similar. HRQOL (from 1 [good] to 5 [poor]) improved after online consultation (from 3.25 to 3.16 [P = .013] vs controls from 3.10 to 3.23; P = .810). Patient satisfaction (from 1 [low] to 10 [high]) was 7.6 (online) vs 8.0 (controls; P = .001); 58% wished to continue online consultations. Mean costs per participant during the studied period were &U20AC;202 less for the online group (P < .001). Conclusions The primary outcome could not be tested because the POC test was unreliable. Nevertheless, our results indicate that online consultations for children and young adults with CD are cost saving, increase CD‐specific HRQOL, and are satisfactory for the majority. Trial Registration Trialregister.nl: NTR3688.