Celiac Disease: Predictors of Compliance With a Gluten-free Diet in Adolescents and Young Adults

 
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Journal of Pediatric Gastroenterology and Nutrition
   49:1–8 # 2009 by European Society for Pediatric Gastroenterology, Hepatology, and Nutrition and
   North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition

       Celiac Disease: Predictors of Compliance With a Gluten-free
                  Diet in Adolescents and Young Adults
            Simona Errichiello, yOscar Esposito, yRaffaella Di Mase, yMaria Erminia Camarca,
               yClelia Natale, yMaria Giovanna Limongelli, yCaterina Marano, yAnna Coruzzo,
                           yMaria Lombardo, yPietro Strisciuglio, and yLuigi Greco

          Department   of Pediatrics, University of Magna Graecia, Catanzaro, and {Department of Paediatrics and European
                Laboratory for the Investigation of Food-Induced Disease, University of Naples ‘‘Federico II,’’ Naples, Italy

   ABSTRACT
   Aims: To identify risk as well as protective factors related to                     was above the 97th percentile in 20 of 204 (9.8%). Diet
   compliance with the gluten-free diet in a cohort of teenagers                       compliance did not seem to influence the weight and height.
   with celiac disease (CD).                                                           One hundred eleven of 150 good compliers (74%) and 31of 54
   Patients and Methods: Two hundred four patients with CD                             (57.4%) poor compliers were asymptomatic. Most patients
   (European Society for Pediatric Gastroenterology, Hepatology,                       reported good family relationships (88.7%), social
   and Nutrition criteria) older than or equal to 13 years and residents               relationships (91.2%), and school integration (88.2%).
   of Campania (southern Italy) were enrolled in the study. Patients                   Alternatively, 54% of patients reported some limitation in
   underwent clinical examination and blood sampling, and were                         their social life. Compliance was good in patients who
   interviewed about school performance, social relationships,                         reported excellent school integration (83%) and social
   family integration, smoking habit, and compliance with a                            relationships (81%).
   gluten-free diet. Anti-tissue transglutaminase antibodies were                      Conclusion: Optimal school integration significantly
   assayed with an enzyme-linked immunosorbent assay.                                  contributes to the likelihood of good compliance. A better
   Results: One hundred fifty of 204 (73.5%) reported no dietary                       understanding within the school environment about CD-
   transgressions, and 54 of 204 (26.5%) reported occasional or                        related issues could improve motivation to adhere to a
   frequent transgressions. During the previous month 29 of 54                         gluten-free diet. JPGN 49:000–000, 2009. Key Words:
   (53.7%) poor compliers ate from 0.001 to 1 g of gluten per day,                     Celiac disease—Diet compliance—Quality of life—Gluten
   14 (25.9%) from 1 to 5 g, and 11 (20.4%) more than 5 g. The                         intake. # 2009 by European Society for Pediatric
   daily intake of gluten was significantly related to anti-tissue                     Gastroenterology, Hepatology, and Nutrition and North
   transglutaminase antibodies (x2 ¼ 38.872, P ¼ 0.000). Height                        American Society for Pediatric Gastroenterology, Hepatology,
   was below the third percentile in 19 of 204 (9.3%), and weight                      and Nutrition

      The increasingly early recognition of celiac disease                             the outcome of patients once they have been diagnosed.
   (CD) has resulted in an increase in the prevalence of the                           Patients’ adherence to a gluten-free diet ranges from
   disease from 1:1000 (1) to 1:100 (2–4), which matches the                           extremely poor (6,7) to satisfactory (8–11). Long-term
   figure forecasted by Magazzù et al (5) more than 12 years                          compliance to a gluten-free diet in CD is an increasing
   ago. Most doctors now recognize and diagnose CD in                                  challenge given the impressive increase in diagnosis, but it
   atypical cases and in apparently healthy individuals as well                        will increase even more when self-managed diagnosis is
   as in openly symptomatic subjects. Less is known about                              available through the point-of-care test (12).
                                                                                          Children are mostly fed by parents. Consequently,
      Received May 29, 2008; final revision received December 18, 2008;
                                                                                       good compliance in young children is related to familial
      Address correspondence and reprint requests to Oscar Esposito,                   awareness about the disease. However, problems arise in
   Department of Paediatrics, University of Naples ‘‘Federico II,’’ Via                the case of teenagers. Children who have long accepted a
   S. Pansini 5, 80131 Naples, Italy (e-mail: oscaresp80@hotmail.com;                  gluten-free diet often rebel during adolescence, and a
   ydongre@unina.it).                                                                  sizeable proportion will stop their gluten-free diet. Social
      This work was supported by European Laboratory for the Investi-
   gation of Food-Induced Diseases and Italian Ministry of Instruction,                integration, self-esteem, and school achievements are at
   University and Research.                                                            risk in teenagers with CD and are likely to generate more
      The authors report no conflicts of interest.                                     problems than clinical complaints.

                                                                                  1

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2                                                                     ERRICHIELLO ET AL.

        Quality of life is a major part of care. A study of self-                                   TABLE 1. Baseline data of the study cohort
     rated quality of life in adults with CD did not reveal any
                                                                                         Variable                                                             n      %
     major problems (13), but teenagers may well feel dif-
     ferently. In an attempt to shed light on this issue, we                             Age 13.00–18.99 y                                                   127    62.2
     evaluated the global well-being (health, education, and                             Age 19.00–25.99 y                                                     64   31.4
     social integration) of teenagers with CD with the aim of                            Age 26.00–30.00 y                                                     13    6.4
                                                                                         Women                                                               127     62
     identifying predictors of good adherence to a gluten-                               Men                                                                   77    38
     free diet.                                                                          Women/men ratio                                                     1.65
        The objective of the study was to evaluate a cohort of                           Age at diagnosis 13 y                                                30   14.7
     factors related to compliance with the gluten-free diet.                            Classic symptoms at diagnosis                                       156    76.5
                                                                                         Atypical symptoms at diagnosis                                       16     7.8
                                                                                         Diagnosis by screening                                                32   15.7
                                                                                         Patients with health problems in last 30 days                        62    30.2
                     PATIENTS AND METHODS
         Two hundred four patients (127 women and 77 men, sex
     ratio 1.65:1), from the Campania region (southern Italy) were
     consecutively admitted to this cross-sectional study on the basis                       The questionnaire was administered after a 2-day training
     of age between 13 and 30 years, CD diagnosed according to                           session of the investigators (qualified S.E., O.E., R.D.M.,
     European Society for Pediatric Gastroenterology, Hepatology,                        M.E.C., C.N., and M.G.L.). We evaluated family and social
     and Nutrition revised criteria (14), and willingness to cooperate.                  integration, integration within the school environment, and
     Patients were divided into 2 groups: those diagnosed as children                    sexual life, on visual analogue scales rated 0 to 25 ranging
     (younger than 13 years) and those diagnosed as teenagers (older                     from poor to excellent. Social integration was investigated
     than 13 years). Table 1 shows the baseline data of this cohort.                     through the description of the daily life of the patients including
         Each patient underwent a complete clinical check-up and                         number of outings, participation in social events, number of
     199 of them underwent a blood sampling. Tissue transgluta-                          friends, and play activities. Feeling of self-constraint related to
     minase was assayed with an enzyme-linked immunosorbent                              the gluten-free diet was also investigated. Smoking habit and
     assay.                                                                              school performance concluded the interview.
         An already standardized self-administered questionnaire                             The second section, related to food habits, was managed by 2
     modified by our previous study (13) was used throughout                             dieticians (A.C. and M.L.). Patients were questioned about their
     (Fig. 1). A psychologist working with our team adapted the                          diet in the previous day, using a standardized 1-day recall form,
     form from internationally validated references (15–20).                             and about the total amount of gluten-containing foods ingested

                                                                                         Family integration:
                        First name: _____ Last name:____ Date of birth:_____ Sex: M/F               5          10            15           20           25
                        Address: ________Phone: _______
                                                                                          Poor       Average        Sufficient    Good         Excellent
                        School:____________ Achievement: ______Job: __
                                                                                         School integration:
                        Age at diagnosis:_______Year: ______ N° of biopsies: ____
                                                                                                    5          10            15           20           25
                        Date of last biopsy:_____Other CD cases in family _________
                        Symptoms at diagnosis:                                            Poor        Average       Sufficient    Good         Excellent
                        Screening Asymptomatic Diarrhoea     Failure to thrive Anaemia   Social relationship:
                        Abdominal pain Other: ____                                                  5          10            15           20           25
                        Associated diseases:
                        Diabetes Thyroid disease IBD Other: _______________               Poor          Average     Sufficient    Good         Excellent
                                                                                         How is your sexual life?
                        Weight: Kg _______ pct° ______ Height: cm ______ pct°_____                  5          10            15           20           25
                        Health status: ______________________
                        Symptoms in the last 30 days:___________________________
                                                                                          Poor          Average     Sufficient    Good         Excellent

                        tTG IgA: ________ Date: ____________                              Your partner knows about your disease: yes no
                                                                                          Do you feel that gluten intolerance makes you different?
                                                                                          Yes no sometimes
                       What did you eat yesterday?
                                                                                          Do you smoke? Yes no Number of cigarettes/day: ________
                                        Gluten-free food       Brand    Amount
                       Breakfast                                                         Compliance to diet in the last 30 days:

                       Snack
                                                                                                    5          10            15           20           25
                                                                                          Poor          Average     Sufficient    Good         Excellent
                       Lunch
                       Snack                                                             What type of product with gluten did you eat in the last 30 days?
                                                                                         (with quantity)_______________________________________
                       Dinner
                                                                                         Occasional transgressions (≤2/month)
                       Other snacks                                                      Frequent transgressions (>2/month)

     FIG. 1. A sample of how the questionnaire was formulated.

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COELIAC DISEASE COMPLIANCE WITH GLUTEN-FREE DIET                                                                          3

   in the last 30 days, using a visual list of gluten-containing items
                                                                               30
   available to this range of population. The daily gluten intake
   was estimated summing the total amount of gluten-containing                 25
   foods ingested in the previous 30 days. The total protein intake            20
   was computed and gluten estimated by multiplying by a factor                15

                                                                           %
   of 0.8 g of gluten per gram of vegetable protein (21).                      10
                                                                               5
                        Statistical Methods                                    0
                                                                                     97
       Data were analyzed with the SPSS statistical package ver-                                               Centiles
   sion 11 (SPSS Inc, Chicago, IL). Continuous variables were
   screened for normal distribution and transformed to reduce                                         Observed                Expected
   skewness, when required. Mann-Whitney and Kruskal-Wallis
   nonparametric tests were used to compare percentages in
   addition to the x2 test. We used logistic regression analysis         FIG. 2. Height percentile distribution.
   to estimate predictors of adherence to the gluten-free diet.
   Multivariate analysis was carried out with dietary compliance
   as dependent variable, and sex, age, familial interaction, school
   performance, school integration, and social integration               had at least 1 associated disease (Table 2). There was no
   as factors.                                                           major health complaint in the cohort. None of the girls
                                                                         had ever been pregnant.
                             RESULTS

         Symptoms at Diagnosis and Health Status                                                  Growth Outcome
      At diagnosis, 32 patients (15.7%) reported no health                  Figures 2 and 3 show the distribution of height and
   complaints; they were diagnosed by family screening.                  weight in the whole group. Nineteen patients (9.3%) had
   Of the remaining 172 patients, 112 (27.5%) reported                   height below the third percentile for sex and age and 25
   recurrent diarrhea, 89 (21.8%) failure to thrive and/or               (12.2%) had height between the third and the 10th
   pubertal delay, 41 (10%) weakness and/or anemia,                      percentile for sex and age. According to the growth
   31 (7.6%) vomiting, 19 (4.7%) recurrent abdominal pain,               standards we expected, among the 204 patients, 7 to
   8 (2.0%) abdominal distensions, 8 (2.0%) headache                     be below the third percentile and 14 between the third and
   or neurological disturbances, 7 skin disease (1.7%),                  10th percentile; there is a significant excess of short
   2 gastritis (0.5%), 2 (0.5%) constipation, and 2 (0.5%)               stature (Wilcoxon test P ¼ 0.042) (22,23). As expected,
   hypertransaminasemia. Point prevalence (previous                      weight was below the third percentile in 7 patients (3.4%)
   30 days) of clinical complaints was evaluated by history              and between the third and the 10th percentile in 18
   taking (Table 2). Thirty-one of the 204 patients (15.2%)              patients (8.8%). Weight was above the 75th percentile
                                                                         in 47 patients (23%). Weight excess (>97th percentile)
                                                                         was observed in 20 (9.8%) patients. Height and weight
   TABLE 2. Symptoms in last 30 days and associated diseases
   Symptom                                          n             %

   Recurrent abdominal pain                         21           10.3
   Constipation                                     10            4.9          30
   Diarrhea                                          9            4.4
   Failure to thrive                                 7            3.5          25
   Headache/neurological disturbances                9            4.4          20
   Skin diseases                                     6            2.9
                                                                               15
                                                                           %

   No symptoms                                     142           69.6
   Total                                           204          100            10
   Associated diseases                                                          5
     Diabetes mellitus type 1                       12            5.9
                                                                                0
     Thyroid diseases                                8            3.9
                                                                                     97
     Other endocrine disturbances                    4            2
     Skin diseases                                   3            1.5                                          Centiles
     Down syndrome                                   3            1.5
     Chronic inflammatory bowel diseases             1            0.5                                  Observed               Expected
     No associated diseases                        173           84.8
     Total                                         204          100
                                                                         FIG. 3. Weight percentiles.

                                                                                          J Pediatr Gastroenterol Nutr, Vol. 00, No. 00, Month 2009

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4                                                            ERRICHIELLO ET AL.

     percentiles were not related to age at diagnosis or to the                             45
     interval from first symptoms to diagnosis.                                             40
                                                                                            35
                                                                                            30

                                                                               % tTg pos
                                                                                            25
                        Educational Achievements                                            20
                                                                                            15
                                                                                            10
        After grouping the patients by age, we analyzed the                                  5
     number that passed the school level expected for their                                  0
                                                                                                            0             0.001--1           1.001--5         5.001--80
     age. We compared these data with the regional statistics
                                                                              x 2 = 38.872 P = 0.000; r = 0.391              Gluten: grams/day
     of school performance: 13% of our patients stopped at the
     primary or secondary level against 53% of the regional                                 25
     reference, 16% at high school against 24.4%, and 3% at                                 20
     university level against 10.8% of the regional reference

                                                                               tTg titers
                                                                                            15
     (24) (x2 ¼ 5.33, P ¼ 0.07) showed no difference.                                                Bad compliers
                                                                                            10
                                                                                                                                          Good compliers
                                                                                            5
                      Self-rated Social Integration
                                                                                            0
                                                                                                 0        20         40    60        80       100       120    140        160
        A total of 181 (88.7%) patients reported good family
                                                                                                                             Tested patients
     integration, 186 (91.2%) reported good social relation-
     ships, and 180 reported (88.2%) good school integ-                       FIG. 4. Ingested gluten and positive anti-tissue transglutaminase
     rations. On the contrary, 110 (53.9%) felt that CD                       antibodies.
     occasionally or often limited their social life.

                               Gluten-free Diet                               (0.001–1 g/day) and medium (1.001–5 g/day) gluten
                                                                              intake, we found 24 of 28 (85.7%) and 9 of 14
        One hundred fifty (73.5%) patients declared they                      (64.2%) with negative tTG, whereas 4 of 28 (14.3%)
     adhered completely to a gluten-free regimen. Fifty-four                  and 5 of 14 (35.7%) had positive tTG, respectively
     (26.5%) reported occasional (less than or equal to                       (x2 ¼ 54.663, P ¼ 0.000). As shown in Figure 4, the
     2/month) or frequent (>2/month) lapses from the diet.                    amount of gluten ingested daily was significantly related
     There was no difference in compliance between males                      to the percentage of patients with increased tTG serum
     and females or among age groups. Dietary compliance                      levels (x2 ¼ 38.872, P ¼ 0.000, r ¼ 0.391); in the lower
     did not affect current weight and height. The interview                  part of the figure individual tTG titers are shown for the
     dietary enquiry revealed that 29 of the 54 (53.7%) poor                  2 groups.
     compliers had assumed a quantity of gluten from 0.001 to
     1 g/day, 14 of them (25.9%) from 1 to 5 g/day, and                                     Compliance to a Gluten-free Diet and Health
     11 (20.4%) >5 g/day during the last month. Types
     of food eaten in transgressions are pizza in 15 of 54                       One hundred eleven of the 150 patients who declared
     (27.8%), snacks or/and sweets in 11 of 54 (20.4%), bread                 good compliance (74%) and 31 of the 54 poor compliers
     in 10 of 54 (18.5%), and 18 of 54 (33.3%) ate several                    (57.4%) had no health complaints. Conversely, health
     gluten-containing foods.                                                 complaints were more frequent among bad compliers
                                                                              (23 of 54) than among good compliers (39 of 150)
         Compliance to a Gluten-free Diet and Serology                        (x2 ¼ 6.025, P ¼ 0.014). Table 4 shows the symptoms
                                                                              we identified in these 2 groups of patients and their
        Not all ‘‘poor compliers’’ were identified by a serum                 correlation with daily gluten intake. As shown, the
     anti-tissue transglutaminase antibodies (tTG) assay, and a               percentage of patients with symptoms was significantly
     large proportion of bad compliers tested had negative                    related to the amount of ingested gluten daily
     tTG (Table 3). Among patients with high gluten intake                    (x2 ¼ 9.117, P ¼ 0.028).
     (>5 g/day) 7 of 11 (63.6%) had negative tTG and 4 of 11
     (36.4%) had positive tTG. Among patients with little                                                            Serology and Health

                                                                                 Among 182 patients with negative tTG, 127 (70%) had
      TABLE 3. Dietary compliance and tissue transglutaminase
                                                                              no health complaints, whereas 55 (30%) reported several
                                Positive           Negative        Total      symptoms: 18 (9.8%) had recurrent abdominal pain, 9
                                                                              (4.9%) had diarrhea, 9 (4.9%) had constipation, 9 (4.9%)
     Good compliance           4 (2.7%)          142 (97.3%)     146 (100%)
     Bad compliance           13 (30.2%)          40 (69.8%)      53 (100%)
                                                                              had headache or neurological disturbances, 5 (2.7%) had
                                                                              failure to thrive, and 5 (2.7%) had skin diseases. Of the
         x2 ¼ 32.988, P ¼ 0.000.                                              remaining 17 patients having positive tTG, 10 (58.8%)

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COELIAC DISEASE COMPLIANCE WITH GLUTEN-FREE DIET                                                               5

                                        TABLE 4. Symptoms in last 30 days and compliance
                                                                                                    Bad compliers

                                               Good compliers                                       Gluten (g/day)

   Symptom                                      No gluten (%)          0.001–1 (%)                     1.001–5 (%)                     >5 (%)

   Recurrent abdominal pain                          12   (8.1)          6   (20.6)                       1   (7.1)                    2   (18.2)
   Constipation                                       7   (4.7)          2   (6.9)                        1   (7.1)                    0   (0)
   Diarrhoea                                          5   (3.3)          2   (6.9)                        0   (0)                      2   (18.2)
   Failure to thrive                                  4   (2.6)          2   (6.8)                        0   (0)                      1   (9.1)
   Headache/neurological disturbances                 6   (4)            2   (6.9)                        1   (7.1)                    0   (0)
   Skin diseases                                      5   (3.3)          0   (0)                          1   (7.1)                    0   (0)
   No symptoms                                      111   (74)          15   (51.7)                      10   (71.4)                   6   (54.5)
   Total                                            150   (100)         29   (100)                       14   (100)                   11   (100)

     x2 ¼ 9.117, P ¼ 0.028.

   were asymptomatic, whereas 7 (41.2%) had health com-            school performance and those with sufficient to average
   plaints: 3 had (17.6%) recurrent abdominal pain, 2 had          performance. However, people with excellent school
   (11.7%) failure to thrive, 1 had (5.8%) constipation, and       integration adhered to the diet better than those with
   1 had (5.8%) skin diseases. There is no statistical corre-      bad or sufficient school integration. About half of the
   lation between tTG and symptoms (x2 ¼ 19.824,                   patients with poor school integration did not adhere to the
   P ¼ 0.707).                                                     diet. A good social relationship was significantly related
                                                                   to dietary compliance. People without feelings of self-
        Compliance to a Gluten-free Diet and Social                constraint complied better with the diet than those with
                       Integration                                 occasional or persistent feelings of self-constraint. There
                                                                   were no differences among sex or age groups.
      Table 5 shows the relation between compliance to a              Nonsmokers had significantly better dietary compli-
   gluten-free diet and social integration. Family integration     ance than smokers in the age group 19 to 26 years,
   did not affect compliance, and similarly, there was no          whereas there were no differences in the other age groups
   difference in compliance between patients with good             (Table 6).

                                         TABLE 5. Dietary compliance and quality of life
                                                                                      Diet

                                        Quality of life                 Good compliance (%)                               Bad compliance (%)

   Family integration
   x2 ¼ 0.9, P ¼ 0.3                    Average/sufficient                     15 (65.2)                                         8 (34.8)
                                        Good/excellent                        135 (74.6)                                        46 (25.4)
   School achievement
   x2 ¼ 0.6, P ¼ 0.4                    Average/sufficient                     63 (70.8)                                        26 (29.2)
                                        Good/excellent                         87 (75.7)                                        28 (24.3)
   School integration
   x2 ¼ 11.1, P ¼ 0.004                 Bad                                    13 (54.2)                                        11 (45.8)
                                        Sufficient/good                        47 (66.2)                                        24 (33.8)
                                        Excellent                              90 (82.6)                                        19 (17.4)
   Social relationship
   x2 ¼ 9.6, P ¼ 0.008                  Bad                                    11 (61.1)                                         7 (38.9)
                                        Sufficient/good                        39 (61.9)                                        24 (38.1)
                                        Excellent                             100 (81.3)                                        23 (18.7)
   Feeling of self-constraint
   x2 ¼ 8.7, P ¼ 0.012                  Yes                                    32 (61.5)                                        20 (38.5)
                                        No                                     78 (83)                                          16 (17)
                                        Sometimes                              40 (69)                                          18 (31)
   Psychosexual relationship
   x2 ¼ 0.185, P ¼ 0.667                Average                                42 (72.4)                                        16 (27.6)
                                        Excellent                              89 (75.4)                                        29 (24.6)

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6                                                           ERRICHIELLO ET AL.

                                          TABLE 6. Dietary compliance and smoke in the different age groups
                                                                                           Diet

     Age groups (y)                                                  Good compliance (%)               Bad compliance (%)              Total

     14–18                                     Smokers                    17   (77.3)                        5   (22.7)                 22
     x2 ¼ 0.19, P ¼ 0.662                      Nonsmokers                 72   (72.7)                       27   (27.3)                 99
     19–26                                     Smokers                    15   (50)                         15   (50)                   30
     x2 ¼ 11.16, P ¼ 0.001                     Nonsmokers                 30   (88.2)                        4   (11.8)                 34
     >26                                       Smokers                     3   (50)                          3   (50)                    6
     x2 ¼ 4.55, P ¼ 0.33                       Nonsmokers                  7   (100)                         0   (0)                     7

        Similarly, psychosexual relationships were unrelated                    awareness of the ‘‘celiac condition’’ within our commu-
     to adherence to the diet (Table 5). Twenty-four of 144                     nities, the second (sometimes crucially important) is the
     patients (16.7%) with a stable partner did not tell their                  excessive tone of dietary prescriptions given by doctors,
     partner they suffered from CD.                                             dieticians, and patients’ groups. The patient can become
                                                                                obsessed with the fear of traces of gluten in canteens and
                           Multivariate Analysis                                restaurants or in common foods and snacks that are not
                                                                                made with gluten-containing flours. Most patients are not
        All of the variables that concern family, school, and                   aware that ‘‘100 parts per million’’ means 100 mg of
     social interaction are related. Therefore, these cannot be                 gluten protein per million milligrams (1 kg) and thus
     individually used as independent predictors of a good or                   10 mg/100 g of flour, a trace amount that has never been
     poor compliance with the diet. To select the best pre-                     shown to be toxic (25–27).
     dictors, we carried out a multivariate analysis with                          Compliance to a gluten-free diet among adolescents
     dietary compliance as dependent variable, and sex,                         has traditionally been reported poor in several studies.
     age, familial interaction, school performance, school                      Kumar et al (6) reported that up to 44% do not comply
     integration, and social integration as predictors. Only                    with the diet. Many of these youngsters had a gluten-free
     school integration significantly contributed to the like-                  diet at home, but were consuming gluten-containing
     lihood of good or poor compliance (Wald statistics ¼                       foods in social meals. Teenagers go out for pizza or
     10.83, P < 0.001, odds ratio 0.44). For each degree of                     sandwiches frequently; they use pizza as a snack also at
     improved school integration, we have about 56% less                        school. Similarly, it has been widely accepted that a
     transgression from the gluten-free diet. None of the                       significant proportion of adult patients do not adhere
     other variables contributed significantly (>10%) to the                    to a gluten-free diet (28). Compliance with a gluten-free
     increase in the log likelihood.                                            diet in Campania is regarded by the patients and the
                                                                                family as a major deprivation from food in general, which
                                 DISCUSSION                                     is understood as pasta and bread. In a different scenario, a
                                                                                ‘‘happy celiac world’’ has been reported recently by Roos
        For many years, physicians have focused on the diag-                    et al (29,30) suggesting that different medical manage-
     nosis and molecular and cellular markers of CD, with                       ment may eventually lead to different ‘‘care’’ of the
     scarce attention being given to the care and well-being of                 patient. This is one of the major reasons for this study
     the patient. Indeed the ratio of, articles devoted to CD                   and our special care toward adolescents. Since 1979, we
     diagnosis versus those dealing with the care of patients is                have provided, through the National Health Service, a
     >10:1. By a PubMed search (key word ‘‘celiac disease’’),                   complete supply (valuable at s200/month), of gluten-
     we found only 28 articles (9%) analyzing the patients’                     free pasta, pizza, and snacks. In Campania the Celiac
     treatment and 227 (75%) focused on the diagnosis on a                      Society set up in 1999 a factory of freshly baked gluten-
     random sample of 300 articles published in the last                        free products that is free to patients.
     3 years.                                                                      In our study, 53 of 204 (26%) teenagers with CD had
        Whereas young children with CD usually adhere to a                      occasional transgressions to the diet, but only 1 of 4 of
     gluten-free diet because of parental influence, the situ-                  them had positive tTG (Table 3). Our group as well as
     ation is more complex in adolescents with CD. Indeed,                      other groups have analyzed the relation between serology
     they frequently reject parental advice; school and social                  and compliance to the diet, since the time when only anti-
     environments are their daily scenario; they are exposed to                 gliadin antibodies were available (31). Unfortunately,
     the comments of their peers, and not infrequently they                     anti-transglutaminase antibodies are related to mucosal
     choose to restrict social relations to easy ones. Many                     damage (32) and this may come late after prolonged
     factors contribute to the self-perceived restriction on the                dietary transgression, so sensitivity in patients with mod-
     social life of these youngsters. The first is the limited                  erate transgression is low (33). We are indeed been

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COELIAC DISEASE COMPLIANCE WITH GLUTEN-FREE DIET                                                               7

   impressed by the relation, shown in Figure 4, between          the care of patients; most of them will cope satisfactorily
   amount of gluten ingested and tTG. We did not expect to        with a gluten-free diet, but others will not. Our data
   find such a significant relation, because the vast majority    suggest that patients who feel limited in their social
   of our patients do substantially adhere to a gluten-free       expression, especially those with poor school integration,
   diet.                                                          tend to be noncompliers. Perhaps one may envisage
      As shown, in this study there is no strict relation         caregivers (doctors included) setting up a bridge of
   between gluten ingestion and actual health status with         communication with the school environment with the
   symptoms: 39 of 150 compliers do experience minor              aim of promoting a reasonable integration of the adoles-
   symptoms as bad compliers do. We have no straight              cent affected by CD into the educational domain. Patient
   explanation, but point prevalence of any cohort of indi-       tailored intervention is likely to help those most likely to
   viduals will produce a list of symptoms of the kind shown      fail to comply with a gluten-free diet.
   in Table 4.
      According to Ciacci et al (34), even a short period of        Acknowledgments: We thank the patients and their families.
   gluten-free diet in childhood may produce a significant        We are grateful to Jean Ann Gilder for editing the text.
   difference in the health status and performance of adult
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8                                                             ERRICHIELLO ET AL.

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