Gastrointestinal Symptoms Increase the Burden of Illness in Dermatitis Herpetiformis: A Prospective Study.

Dermatitis herpetiformis (DH) is an extraintestinal manifestation of coeliac disease. The burden of illness in untreated coeliac disease is known to be considerable, but corresponding evidence for DH is lacking. In this study the burden of DH was evaluated prospectively in 52 patients newly diagnosed with DH using a study questionnaire and a validated Psychological General Well-Being (PGWB) questionnaire. The PGWB scores were compared with those of 110 healthy controls. Quality of life was significantly (p < 0.001) lower among patients with DH at the time of diagnosis, but after 1 year on a gluten-free diet their quality of life was at same level as that of the controls. The presence of gastrointestinal symptoms was shown to significantly increase the burden of untreated DH. We conclude that there is a significant burden related to untreated, but not to treated, DH, and the burden is even greater among DH patients with gastrointestinal symptoms.

Burden of illness and use of health care services before and after celiac disease diagnosis in children.

OBJECTIVES: Prevalence of celiac disease in children is approximately 1%, but most patients remain unrecognized by reason of variable clinical presentation. Undetected patients may have an increased burden of illness and use of health care services because of nonspecific complaints. We investigated these issues prospectively in newly detected patients with celiac disease before and after diagnosis in a large nationwide cohort of children. METHODS: A validated questionnaire was sent to consecutive families whose children had been diagnosed as having celiac disease within 1 year. The survey contained questions about the use of medical consultations, on-demand drugs, vitamins and herbal products, children's absenteeism from day care or school and, parents' work absenteeism. A follow-up questionnaire was sent after 1 year of receiving a gluten-free diet. RESULTS: A total of 132 families responded. A total of 44 children were diagnosed because of gastrointestinal and 88 because of extraintestinal symptoms or by risk-group screening. On treatment, outpatient visits to primary health care decreased from a mean of 3.0 to 1.3 visits per year (P < 0.001), the number of hospitalizations from 0.2 to 0.1 (P = 0.008), and antibiotic prescriptions from 1.0 to 0.5/year (P < 0.001). Visits to secondary and tertiary health care increased from 0.6 to 1.4 (P < 0.001), mostly for celiac surveillance. Use of vitamins, micronutrients, and herbal products increased from 7.3 to 10.2 pills per month (P = 0.028). CONCLUSIONS: Implementation of a gluten-free diet resulted in reduced use of health care services and antibiotic prescriptions in children. Our findings support active case-finding and risk-group screening for celiac disease.

Use of health care services and pharmaceutical agents in coeliac disease: a prospective nationwide study.

BACKGROUND: Approximately 1% of the population suffer from coeliac disease. However, the disease is heavily underdiagnosed. Unexplained symptoms may lead to incremented medical consultations and productivity losses. The aim here was to estimate the possible concealed burden of untreated coeliac disease and the effects of a gluten-free diet. METHODS: A nationwide cohort of 700 newly detected adult coeliac patients were prospectively evaluated. Health care service use and sickness absence from work during the year before diagnosis were compared with those in the general population; the data obtained from an earlier study. Additionally, the effect of one year on dietary treatment on the aforementioned parameters and on consumption of pharmaceutical agents was assessed. RESULTS: Untreated coeliac patients used primary health care services more frequently than the general population. On a gluten-free diet, visits to primary care decreased significantly from a mean 3.6 to 2.3. The consumption of medicines for dyspepsia (from 3.7 to 2.4 pills/month) and painkillers (6.8-5.5 pills/month) and the number of antibiotic courses (0.6-0.5 prescriptions/year) was reduced. There were no changes in hospitalizations, outpatient visits to secondary and tertiary care, use of other medical services, or sickness absence, but the consumption of nutritional supplements increased on treatment. CONCLUSIONS: Coeliac disease was associated with excessive health care service use and consumption of drugs before diagnosis. Dietary treatment resulted in a diminished burden to the health care system and lower use of on-demand medicines and antibiotic treatment. The results support an augmented diagnostic approach to reduce underdiagnosis of coeliac disease. TRIAL REGISTRATION: ClinicalTrials.gov NCT01145287.

Burden of illness in screen-detected children with celiac disease and their families.

OBJECTIVES: Because of a variable clinical picture, most children with celiac disease remain unrecognized without active serologic screening. Because, however, many patients are asymptomatic, the justification for screening remains unclear. We assessed health and well-being and the effect of a 1-year gluten-free diet in a nationwide cohort of children with celiac disease detected by screening in at-risk groups. METHODS: A total of 222 newly detected children received a validated questionnaire covering aspects of the burden caused by the undiagnosed celiac disease. After 1 year, adherence to the diet and difficulties attending this, attitudes toward and effects of disease and diet on daily life, and parents' satisfaction with the diagnosis were inquired about. The children's health and parents' concern for it were asked about at diagnosis and on treatment. The outcomes of screen-detected children were compared with those of children diagnosed on the basis of clinical symptoms. RESULTS: Forty-three screen-detected and 88 symptom-detected children responded. Also, 65% of the screen-detected patients experienced symptoms; these, however, being less troublesome and of shorter duration than in symptom-detected subjects. There were no differences between the groups in dietary adherence (71% vs 84% strict diet), management of the diet (80% vs 80%), alleviation of symptoms (78% vs 86%), and improvement in daily life (73% vs 69%), or in satisfaction with the diagnosis (93% vs 88%). Improved health and reduced parental concern were observed in both groups. CONCLUSIONS: Screen-detected children with celiac disease can attain satisfactory dietary adherence and benefit from treatment similarly to symptom-detected patients. The results support intensified screening for celiac disease in at-risk children.

Diet improves perception of health and well-being in symptomatic, but not asymptomatic, patients with celiac disease.

BACKGROUND & AIMS: The benefits of serologic screening and early diagnosis of celiac disease in asymptomatic patients are not known. We investigated the impact of a gluten-free diet on self-perceived health and well-being in symptomatic and asymptomatic patients with celiac disease. METHODS: We performed a prospective study of 698 consecutive adults newly diagnosed with celiac disease because of classic (n = 490) or extraintestinal (n = 62) symptoms or through screening of at-risk groups (n = 146; 23 were asymptomatic and analyzed separately). The survey included questions on health and well-being; quality of life was evaluated by the psychological general well-being (PGWB) questionnaire. Patients were followed for 1 year of treatment; 110 healthy subjects served as controls. RESULTS: On a gluten-free diet, self-perceived health improved significantly among patients with classic symptoms and those detected by screening. Patients in all groups were equally concerned about their health before the diagnosis, but anxiety was alleviated by the gluten-free diet. At diagnosis, the quality of life reduced among all 3 groups but improved significantly among patients on the diet. Among the 23 asymptomatic patients, perception of health worsened and concern about health increased while they were on the diet. CONCLUSIONS: Self-perceived health and well-being were low among patients at the time they were diagnosed with celiac disease. Most patients benefited from a gluten-free diet, so it is important to identify patients with celiac disease. Perception of health decreased among asymptomatic cases, which discourages population-based screening.

Delayed celiac disease diagnosis predisposes to reduced quality of life and incremental use of health care services and medicines: A prospective nationwide study.

BACKGROUND: Celiac disease is challenging to recognize, predisposing to long diagnostic delay. Currently, associated factors and significance of the delay remain obscure. OBJECTIVE: The objective of this article is to investigate associated sociodemographic risk factors and health consequences of diagnostic delay in celiac disease. METHODS: Altogether 611 patients were surveyed at diagnosis and after one year on a gluten-free diet regarding sociodemographic variables, well-being and use of medicines and health care services. Quality of life was measured by a validated Psychological General Well-Being (PGWB) questionnaire. The results were compared between patients with and without delayed (≥3 years) diagnosis. RESULTS: A total of 332 (54%) individuals reported a delay of ≥3 years. Associated with the delay were being a student or homemaker, but not gender, marital or occupational status, site of diagnosis or place of residence. Patients with the delay also had decreased self-perceived health and poorer PGWB scores compared to those without delay; in anxiety and general health this was seen even on a gluten-free diet. Days of sickness and doctor visits as well as use of drugs for dyspepsia and antidepressants were increased in the delay group both before and after diagnosis. CONCLUSION: A delay in celiac disease diagnosis predisposes to reduced well-being and incremental use of medicines and health care services, both before diagnosis and one year after diagnosis.

Oats can diversify a gluten-free diet in celiac disease and dermatitis herpetiformis.

Finnish celiac disease and dermatitis herpetiformis patients have used oat-containing gluten-free diets since 1997. The aim of this study was to evaluate how the use of oats has been adopted. The use of oats and the effect of oats on symptoms and quality of life were investigated in 1,000 randomly selected members of the Celiac Society. Altogether, 710 patients responded: 423 (73%) with celiac disease and 70 (55%) with dermatitis herpetiformis were currently consuming oats. Patients appreciated the taste, the ease of use, and the low costs; 94% believed that oats diversified the gluten-free diet; 15% of celiac disease and 28% of dermatitis herpetiformis patients had stopped eating oats. The most common reasons for avoiding oats were fear of adverse effects or contamination. There is a market demand for oats, and celiac societies and dietitians should make efforts to promote the development of products free of wheat contamination.

Patients' experiences and perceptions of living with coeliac disease - implications for optimizing care.

BACKGROUND AND AIMS: Little is known regarding the impact of coeliac disease on daily living from patients' own viewpoints. The aim of the study was to investigate patients' perceptions of their disease, dietary treatment and self-rated healthcare needs. METHODS: This prospective study involved 698 newly detected adult coeliac disease patients diagnosed due to classical abdominal symptoms, extraintestinal symptoms or active screening in at-risk groups. Participants were asked about their experiences of living with coeliac disease and of adopting a gluten-free diet, as well as their disease-related needs at diagnosis and after one year on treatment. RESULTS: All patients were equally satisfied that they had been diagnosed with coeliac disease irrespective of initial clinical presentation. However, young patients and those with extraintestinal symptoms or asymptomatic and detected by screening in at-risk groups rated the impact on daily living of the disease and adherence to a gluten-free diet with significantly more disapproval than those with classical symptoms. The former groups clarify also reported dietary lapses and a negative attitude to the disease more frequently. Negative perceptions were associated with dissatisfaction with the quality of doctor-patient communication and younger age at diagnosis. CONCLUSIONS: Established doctor-patient communication is essential in minimizing the disease burden. Particularly young and screen-detected asymptomatic patients and those with extraintestinal manifestations require extensive support.

Changes in body mass index on a gluten-free diet in coeliac disease: a nationwide study.

OBJECTIVE: The clinical presentation of coeliac disease has changed and patients are often overweight at diagnosis. There is concern that patients might gain further weight while on a gluten-free diet (GFD). The aim of the study was to evaluate the impact of a GFD on the body mass index (BMI) in a nationwide cohort of coeliac patients and to determine variables predictive of favourable or unfavourable BMI changes. METHODS: We prospectively investigated weight and disease-related issues in 698 newly detected adults diagnosed due to classical or extraintestinal symptoms or by screening. BMI at diagnosis and after one year on a GFD were assessed and compared with that in the general population. RESULTS: At diagnosis, 4% of subjects were underweight, 57% normal, 28% overweight and 11% obese. On a GFD, 69% of underweight patients gained and 18% of overweight and 42% of obese lost weight; in the rest BMI remained stable. Changes were similar in both symptom- and screen-detected patients. The coeliac group had a more favourable BMI pattern than the general population. Favourable BMI changes were associated with subjects' self-rated expertise on GFD and young age at diagnosis, but not dietary counselling received. CONCLUSIONS: BMI improved similarly in screen- and symptom-detected coeliac disease patients on a GFD.

Diagnosis of celiac disease in clinical practice: physician's alertness to the condition essential.

GOALS: We have for several years been training health personnel to recognize celiac disease, and have advocated serologic screening in risk groups. The aim was to establish whether this approach would offer an alternative to population screening, which has yielded a prevalence of 1% in Finland. BACKGROUND: The number of detected celiac disease cases is much lower than that obtained in serologic screening studies. STUDY: Nationwide recommendations for the detection of celiac disease were published in 1998, and training of health personnel took place in 2001 to 2002. The prevalence of celiac disease was calculated from the national registry of patients receiving reimbursement for dietary costs, attested by physician's statement. In 1 of the 10 statements the diagnostic criteria and clinical manifestations were scrutinized. RESULTS: The nationwide prevalence of celiac disease was 0.45%; 0.7% in the highest to 0.3% in the lowest area. The annual number of new patients increased from 5/100,000 in the early 1980s to 20/100,000 today. The percentage of patients found in risk groups (relatives of celiac disease patients, patients with extraintestinal symptoms or concomitant autoimmune disorders) was currently 16.3% in the high and 6.6% in the low prevalence area. Seventeen percent of patients had dermatitis herpetiformis, and its incidence was declining. CONCLUSIONS: A maximal prevalence of 0.7% of celiac disease was ascertained; educating primary health care staff regarding the protean manifestations of the disease seemed to be the key issue. The increase in incidence implies that a prevalence of 1.0% is possible, rendering population screening unnecessary.