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The gluten-free diet: How to provide effective education and resources
Abstract
A strict gluten-free diet (GFD) for life is the only treatment for celiac disease (CD). This article reviews (1) the impact of the GFD on the quality of life of individuals with CD and their families; (2) the causes of poorly controlled CD; (3) the access to and source and quality of information provided by health professionals and other groups; (4) management strategies, including nutritional assessment and education guidelines; (5) a variety of resources available to individuals and health professionals; (6) innovative educational initiatives and partnerships; and (7) specific recommendations to address the increasing numbers of people with CD and the growing need for gluten-free (GF) foods and further education about CD and the GFD. Successful management of CD requires a team approach, including the person with CD and his or her family, physician, dietitian, and celiac support group; an individualized approach; understanding of quality of life issues; use of evidence-based, current information and resources; and regular follow-up to monitor compliance, nutritional status, and additional information and support. The physician must clearly communicate, with a positive attitude, an overview of CD and strongly emphasize the importance of a GFD for life. It is essential that the physician initiate an immediate referral to a dietitian with expertise in CD for nutritional assessment, diet education, meal planning, and assistance with the adaptation to the challenging new gluten-free lifestyle. Good dietary compliance will reduce the risk of further complications and associated health care costs and improve quality of life in patients with CD.
... Individuals should also be directed to CD support networks and organizations if appropriate for further guidance and information [7,8,14]. Proper ongoing support and counseling increase the likeliness of adherence towards a gluten free diet and positive prognosis throughout the life span [7,[14][15][16][17][18]. ...
... All celiac disease patients should receive periodic medical follow up in order to review existing or new symptoms, adherence to gluten free diet and monitoring of nutritional status (weight, height and BMI) and deficiencies [7,8,11]. There are currently unclear universal, standardised guidelines in terms of the frequency of follow up however it is well understood that continuity of follow up and nutritional monitoring is imperative in the treatment of CD [7,8,16]. The World Gastroenterology Organization suggests biochemical and nutrition led follow up every 3-6 months until abnormal baseline tests are corrected / until clinical stabilization; then every 1-2 years (17). ...
... The symptoms will improve when the gluten is taken away from the diet and thus also reenforces the diagnosis. However, it has been suggested that NCGS may be a transient condition therefore there are uncertainties with regards to the recommendations of how long the diet should be followed for and to what strict extent [16,20]. In has been suggested, the gluten free diet can be followed within a specific time frame for example 12-24 months, before reviewing gluten tolerance again by following a guided re-introduction of gluten into the diet [20]. ...
With the urbanization and development of mankind, digestive disorders due to wheat or its constituent gluten has seen increased prevalence globally. Celiac disease (CD), non-celiac gluten sensitivity (NCGS) and Wheat Allergy are all conditions in which the primary treatment is avoidance of specific dietary components. There are certain overlaps and often common misconceptions associated with these three conditions. Following a wheat or gluten free diet can be extremely difficult and overwhelming for an individual as well as having an impact on their nutritional status, growth and quality of life. Currently there is a lack of clarity in terms of global standard dilations for the management of all three of the named conditions. The aim of this paper is to provide an update on different gluten related disorders, their nutritional management and to provide practical guidance on implementing the specific dietary changes.
... Ob ein Produkt Gluten enthält, lässt sich aus der Zutatenliste ersehen. Die Zutat Gluten kann sich hinter verschiedenen Begriffen wie Pflanzeneiweiß, Getreidemehl, Weizenprotein (Weizeneiweiß), Verdickungs-und/oder Backtriebmittel, Geliermittel oder Kleie verbergen [66,67,69,70,76,79]. ...
... Die jährlichen Kontrolluntersuchungen unter glutenfreier Ernährung sollten neben der ärztlichen Kontrolle und Kontrollen von Laborparametern (und ggf. Kontrollen der Histologie) auch ein Gespräch mit einer Ernährungsberaterin umfassen [21,22,69,70], bei der die Kenntnisse und die Adhärenz zu einer glutenfreien Ernährung überprüft werden und ggf. ergänzende Beratungen z. ...
... Die wichtigste Methode zur Überprüfung der Adhärenz zu einer glutenfreien Ernährung stellt ein Gespräch mit einer in der Betreuung von Zöliakiepatienten erfahrenen Ernährungsberaterin dar [69,70,73,74,102]. Beim Vergleich verschiedener serologischer Verfahren (IgA-anti-tTG-Antikörper, IgA-und IgG-DGP-Antikörper) mit einem standardisierten Interview durch eine Ernährungsberaterin schnitt Letzteres deutlich besser ab [112]. ...
Zusammenfassung
Eine glutenfreie Ernährung ist seit 60 Jahren die einzige Therapieoption für Patienten mit Zöliakie oder Dermatitis herpetiformis zur Normalisierung der Beschwerden und Verhinderung von Komplikationen. Eine glutenfreie Ernährung erfreut sich jedoch in jüngster Zeit zunehmender Beliebtheit wegen vermuteter Effekte auf Wohlbefinden und Leistungsfähigkeit sowie zur Kontrolle des Körpergewichts.
In der vorliegenden Übersicht wird auf gesicherte Indikationen für eine glutenfreie Ernährung, auf die Notwendigkeit einer eingehenden Beratung und Schulung des Patienten, auf Probleme und Schwierigkeiten bei der Umsetzung einer glutenfreien Ernährung in den täglichen Alltag und auf mögliche Nebenwirkungen unter Langzeittherapie eingegangen. Neue Methoden zur Überprüfung der Adhärenz zu einer glutenfreien Ernährung werden erörtert, die ernährungsmedizinische Qualität etlicher lebensmitteltechnologisch hergestellter glutenfreier Nahrungsmittel wird kritisch diskutiert.
... Researchers must also use caution when generalizing results of intervention studies, given that study samples often consist of Caucasian, middle-class participants; availability of GF items may vastly differ by sample characteristics. Beyond educating the family about how to identify GF foods, adherence promotion efforts may incorporate educational training for schools and community organizations and advocacy for clear, accurate labeling of GF options by cafeterias, restaurants, food manufacturers, and grocery stores (Case, 2005). ...
... Evidence-based, up-to-date information is needed to effectively adhere to a GFD (Case, 2005). Interventions may also promote access to GFD educational resources and social networks. ...
... There is also extensive evidence across pediatric chronic illness literature to support a multidisciplinary approach to condition management, including improved adherence and health outcomes (Modi et al., 2012). Case (2005) and recommend a team approach (e.g., physicians, behavioral health specialists, dietitians, social workers) in supporting adherence to GFD. Indeed, each medical provider plays a unique role in educating patients and families, assessing compliance and medical outcomes, and promoting behavior changes. ...
Objective:
To summarize gluten-free diet (GFD) nonadherence risk factors, nonadherence rates, and current intervention research within an integrative framework and to develop a research agenda for the development and implementation of evidence-based GFD adherence interventions.
Methods:
Topical review of literature published since 2008 investigating GFD adherence in pediatric samples.
Results:
Reviews of pediatric studies indicate GFD nonadherence rates ranging from 19 to 56%. There are few evidence-based, published pediatric GFD adherence interventions. Novel assessments of GFD adherence are promising but require further study. Nonmodifiable and modifiable factors within individual, family, community, and health systems domains must be considered when developing future interventions. Clinical implications are discussed.
Conclusions:
Avenues for future research include development and refinement of adherence assessment tools and development of evidence-based GFD adherence interventions. Novel technologies (e.g., GFD mobile applications) require empirical study but present exciting opportunities for adherence intervention.
... propriate food storage in 12.9% (8), 13.5% (5) La enfermedad celíaca (EC) es una enteropatía autoinmune provocada por la exposición al gluten ingerido en la dieta en individuos genéticamente predispuestos. Se caracteriza por la inflamación crónica del intestino delgado, debido a una intolerancia permanente al gluten. ...
... A su vez, no es suficiente con restringir la dieta a la selección de alimentos, sino que también toma un papel muy importante la manipulación de los mismos para evitar la contaminación cruzada y la ingestión de gluten oculto. 8 En Argentina existen asociaciones que generan listados de marcas y alimentos permitidos libres de gluten lo que permite seguridad en la ingesta de los alimentos industrializados, pero se desconoce la oferta de alimentos elaborados listos para el consumo aptos para personas con EC. Se desconoce también si dicha oferta varía en barrios con diferente nivel socioeconómico (NSE), pudiendo re-En cada local se evaluó la disponibilidad de preparaciones de ALG, adecuación de las instalaciones para la preparación de ALG y los procesos de almacenamiento, elaboración y distribución de alimentos susceptibles de contaminación. ...
La enfermedad celíaca es una enteropatía autoinmune. Su tratamiento consiste en suspender definitivamente el gluten en la dieta, lo cual representa un desafío en el consumo de comidas elaboradas. Objetivo. Describir la oferta segura de alimentos elaborados libres de gluten en 3 barrios de la ciudad de Buenos Aires representativos del nivel económico alto, medio y bajo. Métodos. Estudio de corte transversal. Monitores especialmente entrenados evaluaron la oferta de alimentos libres de gluten en locales de comida elaborada mediante observación directa estandarizada. En casos donde esto fue imposible, se realizó en forma indirecta, a través de una entrevista estructurada al personal de dicho local. Se clasificó la oferta de platos por categorías y se evaluaron especialmente las etapas de almacenamiento, elaboración y distribución de los alimentos. Resultados. Se incluyeron 112 locales. Los resultados, para los barrios representativos del nivel económico alto, medio y bajo, respectivamente, fueron: locales sin ningún plato libre de gluten: 27,5% (45/62); 27,0% (27/37) y 30,8% (9/13), (p = 0,96); almacenamiento adecuado en el 12,9% (8), 13,5% (5) y 7,7% (1), (p = 0,85); elaboración apropiada en el 17,7%, 13,5% y 7,7%, (p = 0,61); distribución adecuada en el 8,1%, 8,1% y 0% (0), (p = 0,56). Conclusión. En los barrios de la ciudad de Buenos Aires evaluados, uno de cada cuatro locales de comida elaborada no tenía disponibilidad de al menos un plato libre de gluten. Asimismo, se detectó una importante falta de cumplimiento de las medidas de seguridad para evitar la contaminación cruzada.
... Many patients found it difficult to follow a GFD due to a lack of education. The successful adaptation to the gluten-free lifestyle often requires proper nutrition assessment, diet education and meal planning instructed by a qualified dietitian expertized in the GFD (Case, 2005). Even nowadays gluten-related disorders were considered rare conditions in China, with most physicians and dietitians having received minimal education about gluten-related disorders and the GFD. ...
... Standard diagnosis practice and dietary management of gluten-related disorders, especially CD, have been established in western countries (Rubio-Tapia et al., 2013;Schuppan et al., 2015). After diagnosis, patients generally have an appointment with a dietitian to learn how to eliminate gluten from their diets and understand cross-contamination risks (Case, 2005;Fok, Holland, Gil-Zaragozano, & Paul, 2016). Muhammad et al. (Muhammad, Reeves, Ishaq, Mayberry, & Jeanes, 2017) found a high proportion of South Asian CD patients reporting difficulties in following a GFD, such as not understanding food labeling and not knowing what to eat. ...
... propriate food storage in 12.9% (8), 13.5% (5) La enfermedad celíaca (EC) es una enteropatía autoinmune provocada por la exposición al gluten ingerido en la dieta en individuos genéticamente predispuestos. Se caracteriza por la inflamación crónica del intestino delgado, debido a una intolerancia permanente al gluten. ...
... A su vez, no es suficiente con restringir la dieta a la selección de alimentos, sino que también toma un papel muy importante la manipulación de los mismos para evitar la contaminación cruzada y la ingestión de gluten oculto. 8 En Argentina existen asociaciones que generan listados de marcas y alimentos permitidos libres de gluten lo que permite seguridad en la ingesta de los alimentos industrializados, pero se desconoce la oferta de alimentos elaborados listos para el consumo aptos para personas con EC. Se desconoce también si dicha oferta varía en barrios con diferente nivel socioeconómico (NSE), pudiendo re-En cada local se evaluó la disponibilidad de preparaciones de ALG, adecuación de las instalaciones para la preparación de ALG y los procesos de almacenamiento, elaboración y distribución de alimentos susceptibles de contaminación. ...
Celiac disease is an autoimmune enteropathy. The only known treatment consists of a permanent adherence to a strict gluten-free diet, which represents an important challenge for patients. Objective. To describe the gluten-free processed food offer in food locals from 3 neighborhoods representative of high, middle and low economic status in Buenos Aires, Argentina. Methods. Cross-sectional study. Specially trained monitors performed a standardized direct assessment of food locals. Whenever direct observation was not possible, we interviewed the personnel as an indirect assessment. We classified dish offer in different categories, and evaluated the processes of food elaboration, storage and distribution. Results. We included 112 food locals. Results for neighborhoods representative of high, middle and low economic status were, respectively: no gluten free dish available in 27.5% (45/62), 27.0% (27/37) and 30.8% (9/13), (p = 0.96); adequate elaboration in 17.7%, 13.5% and 7.7%, (p = 0.61); ap-propriate food storage in 12.9% (8), 13.5% (5) and 7.7% (1); (p = 0.85); adequate distribution in 8.1%, 8.1% and 0% (0), (p = 0.56). Conclusion. In 1 out of 4 food locals there was not even one gluten free dish. In addition, there was a lack of compliance with safety measures to avoid gluten cross-contamination. © 2015, Sociedad Argentina de Gastroenterologia. All rights reserved.
... Additionally, it has the potential to foster collaborations among academia, healthcare institutions, and industry, thereby facilitating the advancement of state-of-the-art therapies, diagnostic tools, and dietary products. Furthermore, research funding can contribute to educational initiatives to enhance public knowledge regarding gluten-related diseases, their associated symptoms, and the significance of proper dietary management [62]. This enables individuals to make wellinformed decisions regarding their health. ...
Background
A gluten-free diet (GFD) has become one of the most popular eating plans and is essential for managing gluten-related medical conditions, signs, and symptoms. Therefore, we performed a bibliometric analysis of the scientific literature on the GFD to describe the research landscape.
Methods
The Scopus database was searched for publications on the GFD from 1952 to 2021. A bibliometric analysis of the data was performed. VOSviewer software was used to perform visualization analysis, co-occurrence analysis, and publication trends in GFD.
Results
A total of 3,258 publications were retrieved. In terms of publications, Italy (n = 468, 14.36%) led in the number of publications, followed by the USA (n = 398, 12.22%) and Spain (n = 274, 8.41%). The retrieved documents earned an average of 22.89 citations per document, for a total of 74,560 citations. Since 2001, there has been a gradual growth in the number of articles published, going from 23 to more than 370 in 2021. Using the mapping terms in the title/abstract a minimum of 50 times, 291 terms were divided into two main clusters: ‘adherence to a gluten-free diet in celiac disease’ and ‘improvement of the nutritional and sensory quality of gluten-free products.’
Conclusions
Over the past six decades, there has been a growing need for gluten-free bakery products and a noticeable increase in related publications. This study indicates that the “improvement of the nutritional and sensory quality of gluten-free products” will remain a hotspot in this research field for upcoming years.
... Genel olarak glüten içeren besinler sağlıklı ve dengeli beslenmede önemli bir grubu oluşturmaktadır ancak bazı insanlar çeşitli sağlık sorunları nedeniyle glüteni günlük beslenme düzeninden çıkartmak zorundadır (Haas vd., 2014). Çölyak hastalığı, ömür boyu katı glütensiz bir beslenme gerektiren hastalıkların başında gelmektedir (Case, 2005;Akoğlu ve Oruç, 2018). Bunun yanında, glüten hassasiyeti ve buğday alerjisi gibi durumlarda da glütensiz beslenme önerilmektedir (Niewinski, 2008;Guandalini ve Newland, 2011;Tuck vd., 2019;Lerner vd., 2022). ...
Amaç: İnsanların restoran tercihlerinde restoranda sunulan ürünler, hizmet kalitesi, lokasyon ve görsel çekicilik gibi unsurlar etkili olmaktadır. Bunun yanında insanların sağlık durumları, inançları ve kültürleri gibi kişisel pek çok unsur restoran seçiminde önem kazanmaktadır. Bu doğrultuda işletmeler müşterilerine glütensiz, vegan ve vejataryen gibi özel beslenme seçenekleri sunabilmektedir. Yapılan bu çalışmanın amacı özel beslenme seçeneklerinden olan glütensiz beslenme kapsamında restoranların mevcut durumunu ortaya koymaktır. Yöntem: Nitel araştırma yaklaşımı ile Michelin Rehberi’nde yer alan ve Tripadvisor sitesinde glütensiz beslenme seçeneği mevcut olan beş farklı şehirdeki toplam 85 restoran incelenmiştir. Araştırmada Atina, Abu Dabi, İstanbul, Seul ve Venedik’te bulunan restoranların Tripadvisor’da ve internet sitelerinde yer alan bilgileri ve menüleri incelenmiş, veriler betimsel analiz tekniği ile analiz edilmiştir. Bulgular: Araştırma sonucunda araştırmaya dahil edilen restoranların önemli bir kısmının glütensiz seçeneklere yer verdikleri ve glütensiz ürünlerin farklı mutfak türlerinde yer bulduğu ancak menülerinde glütensiz ürünleri etiketleme ve alerjen uyarıları gibi konularda ciddi eksikliklerin bulunduğu tespit edilmiştir. Tartışma: Araştırmadan elde edilen sonuçların farklı şehirler kapsamında önemli farklılıklar göstermemesi restoran menülerinde glütensiz seçeneklere yönelik sorunların genellenebilir nitelikte olduğunu ortaya koymaktadır.
... In 2013, the Law on Food for Special Nutritional Needs (Official Gazette No. 39/2013) was passed, in which the conditions that must be met during production all the way up to placing the food on the market are stated. The Law on Food for Special Needs is aligned with the Commission Regulation(Case, 2005). In Croatia, there is an association called the Croatian Society for Celiac Disease (HDC), which is a non-profit, civil organization under the auspices of the Ministry of Health, the Croatian Institute of Public Health, the Croatian Medical Association, etc.(Rashid et al. 2005). ...
Celiac disease is an autoimmune disease of a chronic type, which occurs as a result of consuming foods with gluten and its related proteins. It can be found in approximately 1% of the total population of Europe, while in many affected individuals the disease has unclear symptoms and remains unrecognized for a long time.
... Much of the literature in the CD field concerns what is safe and not safe to consume when adhering to the required GFD. Further, professional guidelines for managing CD and a growing body of literature over the past two decades address quality of life (e.g., [17,31,32]. Recently, a novel viewpoint of benchmarks was suggested. ...
Celiac disease (CD) is a chronic health condition treated by managing a lifelong, strict, and demanding gluten-free diet. Managing the diet entails effective use of self-management skills. This study aimed to explore self-generated procedures children and adolescents with CD in Israel perform when participating in food-related activities considering their self-management skills and health requirements. Participants included children and adolescents with CD, aged 8 to 18 years, that had been diagnosed more than 6 months prior to the study. Parents completed a demographic questionnaire and reported their child’s constancy in adherence to the diet. Children and adolescents were asked to share the things they do themselves to prepare for participating in the various activities. Responses were qualitatively analyzed, and common themes were identified and categorized using directed analysis. Participants were 126 children and adolescents (Mage = 12.33 yr, SD = 2.85), 67.5% of whom had been diagnosed more than 3 yr prior to the study. Based on parents’ reports, almost all (97.6%) participants “always adhered” to the diet. A total of 10 categories were defined from the qualitative responses describing 125 do and don’t actions used by the children and adolescents to self-manage their diet. The do and don’t actions encompass cognitive planning far beyond the mere act of avoiding gluten. These actions can serve as an initial database of suggested strategies to support acquiring independent self-management. Understanding the cognitive complexity of routinely carrying out the diet while actively participating in everyday activities can assist health professionals in building support and intervention programs, promoting effective self-management, and facilitating optimal adherence to the diet.
... For these reasons, it is important that celiac patients receive instructions for a balanced diet, not only aimed at avoiding gluten. It is essential that, after the diagnosis, the physician initiate an immediate referral to a dietitian with expertise in CD for nutritional assessment, diet education, meal planning, and assistance with the adaptation to the challenging gluten-free lifestyle [69]. ...
Immune-mediated inflammatory skin diseases are characterized by a complex multifactorial etiology, in which genetic and environmental factors interact both in genesis and development of the disease. Nutrition is a complex and fascinating scenario, whose pivotal role in induction, exacerbation, or amelioration of several human diseases has already been well documented. However, owing to the complexity of immune-mediated skin disease clinical course and breadth and variability of human nutrition, their correlation still remains an open debate in literature. It is therefore important for dermatologists to be aware about the scientific basis linking nutrition to inflammatory skin diseases such as psoriasis, atopic dermatitis, hidradenitis suppurativa, bullous diseases, vitiligo, and alopecia areata, and whether changes in diet can influence the clinical course of these diseases. The purpose of this narrative review is to address the role of nutrition in immune-mediated inflammatory skin diseases, in light of the most recent and validate knowledge on this topic. Moreover, whether specific dietary modifications could provide meaningful implementation in planning a therapeutic strategy for patients is evaluated, in accordance with regenerative medicine precepts, a healing-oriented medicine that considers the whole person, including all aspects of the lifestyle.
... Barijere u održavanju režima stroge bezglutenske ishrane nastaju zbog više faktora, među kojima su najvažniji: neadekvatne informacije, nedovoljna edukacija o bolesti, kontaminacija hrane, neadekvatna deklaracija na upakovanim namirnicama [9]. Uspešno upravlјanje bezglutenskom dijetom zahteva timski pristup, uklјučujući pacijenta, porodicu, lekara, medicinsku sestru i dijetetičara [10]. Podrška deci od strane porodice utiče na poštovanje dijete bez glutena i, samim tim, im osigurava i bolјi zdravstveni kvalitet života [11,12]. ...
SAŽETAK
Uvod: Celijakija je autoimuna bolest koja nastaje zbog
neadekvatne imunske reakcije u kontaktu s glutenom kod genetski
predisponiranih osoba. Barijere u održavanju stroge bezgluten�ske ishrane nastaju zbog više faktora, a najčešći među njima su:
neadekvatne informacije, nedovoljna edukacija o bolesti, kontami�nacija hrane.
Cilj istraživanja: Utvrditi načine informisanja roditelja o celi�jačnoj bolesti koja je dijagnostikovana kod njihove dece, kao i sazna�vanje o potrebnim postupcima kojima se unapređuje informisanost o
bezglutenskoj ishrani.
Ispitanici i metod: Istraživanjem je obuhvaćen uzorak od 116
roditelja čija deca imaju dijagnozu celijačne bolesti i koja su na
bezglutenskoj ishrani. Mesto istraživanja su Institut za zdravstvenu
zaštitu majke i deteta Srbije „Dr Vukan Čupić“ u Novom Beogradu
i Univerzitetska dečja klinika u Beogradu. Korišćeni instrument is�traživanja je Upitnik o informisanosti roditelja o celijačnoj bolesti
koji je kreiran za potrebe ovog istraživanja.
Rezultati sa diskusijom: Rezultati studije pokazuju da 47,14%
roditelja dece sa celijačnom bolešću, informacije o pravilnoj ishrani
svoje dece i bezglutenskim namirnicama traže od lekara ustanove
gde je dijagnostikovana bolest kod deteta. Da bi bolje razumeli di�jagnozu celijačne bolesti kod svog deteta, 53,01% roditelja je najčešće
biralo razgovor sa lekarom koji leči dete.
Zaključak: Informacije o pravilnoj ishrani dece i bezglutenskim
namirnicama, kao i konkretne informacije o celijakiji, traže se od le�kara ustanove gde je dijagnostikovana bolest kod deteta i gde odlaze
na kontrole. Mnoge komplikacije prouzrokovane neprepoznatom
celijačnom bolešću mogle bi biti sprečene pravovremenom dijagnos�tikom i pravilnim držanjem dijete, čemu doprinosi dobra i adekvat�na informisanost.
Ključne reči: celijakija, deca, bezglutenska ishrana, informacije
o glutenu
... Barijere u održavanju režima stroge bezglutenske ishrane nastaju zbog više faktora, među kojima su najvažniji: neadekvatne informacije, nedovoljna edukacija o bolesti, kontaminacija hrane, neadekvatna deklaracija na upakovanim namirnicama [9]. Uspešno upravlјanje bezglutenskom dijetom zahteva timski pristup, uklјučujući pacijenta, porodicu, lekara, medicinsku sestru i dijetetičara [10]. Podrška deci od strane porodice utiče na poštovanje dijete bez glutena i, samim tim, im osigurava i bolјi zdravstveni kvalitet života [11,12]. ...
1 Akademija strukovnih studija Beograd, Odsek Visoka zdravstvena škola, Beograd 2 Univerzitet u Kragujevcu, Fakultet medicinskih nauka, Katedra za pedijatriju, Kragujevac SAŽETAK Uvod: Celijakija je autoimuna bolest koja nastaje zbog neadekvatne imunske reakcije u kontaktu s glutenom kod genetski predisponiranih osoba. Barijere u održavanju stroge bezgluten-ske ishrane nastaju zbog više faktora, a najčešći među njima su: neadekvatne informacije, nedovoljna edukacija o bolesti, kontami-nacija hrane. Cilj istraživanja: Utvrditi načine informisanja roditelja o celi-jačnoj bolesti koja je dijagnostikovana kod njihove dece, kao i sazna-vanje o potrebnim postupcima kojima se unapređuje informisanost o bezglutenskoj ishrani. Ispitanici i metod: Istraživanjem je obuhvaćen uzorak od 116 roditelja čija deca imaju dijagnozu celijačne bolesti i koja su na bezglutenskoj ishrani. Mesto istraživanja su Institut za zdravstvenu zaštitu majke i deteta Srbije "Dr Vukan Čupić" u Novom Beogradu i Univerzitetska dečja klinika u Beogradu. Korišćeni instrument is-traživanja je Upitnik o informisanosti roditelja o celijačnoj bolesti koji je kreiran za potrebe ovog istraživanja. Rezultati sa diskusijom: Rezultati studije pokazuju da 47,14% roditelja dece sa celijačnom bolešću, informacije o pravilnoj ishrani svoje dece i bezglutenskim namirnicama traže od lekara ustanove gde je dijagnostikovana bolest kod deteta. Da bi bolje razumeli di-jagnozu celijačne bolesti kod svog deteta, 53,01% roditelja je najčešće biralo razgovor sa lekarom koji leči dete. Zaključak: Informacije o pravilnoj ishrani dece i bezglutenskim namirnicama, kao i konkretne informacije o celijakiji, traže se od le-kara ustanove gde je dijagnostikovana bolest kod deteta i gde odlaze na kontrole. Mnoge komplikacije prouzrokovane neprepoznatom celijačnom bolešću mogle bi biti sprečene pravovremenom dijagnos-tikom i pravilnim držanjem dijete, čemu doprinosi dobra i adekvat-na informisanost. Ključne reči: celijakija, deca, bezglutenska ishrana, informacije o glutenu. SUMMARY: Introduction: Celiac disease is an autoimmune disease caused by an inadequate immune response in contact with gluten in genetically predisposed individuals. Barriers to maintaining a strict gluten-free diet arise due to several factors, the most common of which are: inadequate information, insufficient education about the disease, food contamination. Aim of the research: To determine the ways of informing parents about the celiac disease that has been diagnosed in their children, as well as to learn about the necessary procedures to improve information about gluten-free diet. Subjects and method: The study included a sample of 116 parents whose children are diagnosed with celiac disease and who are on a gluten-free diet. The place of research Results with discussion: The results of the study show that 47.14% of parents of children with celiac disease ask for information about the proper nutrition of their children and gluten-free foods from the doctor of the institution where the child was diagnosed with the disease. In order to better understand the diagnosis of celiac disease in their child, 53.01% of parents most often chose to talk to the doctor who treats the child. Conclusion: Information on proper nutrition of children and gluten-free foods, as well as specific information on celiac disease, is requested from the doctor of the institution where the disease was diagnosed in the child and where they go for checkups. Many complications caused by unrecognized celiac disease could be prevented by timely diagnosis and proper posture of the child, which contributes to good and adequate information.
... Barijere u održavanju režima stroge bezglutenske ishrane nastaju zbog više faktora, među kojima su najvažniji: neadekvatne informacije, nedovoljna edukacija o bolesti, kontaminacija hrane, neadekvatna deklaracija na upakovanim namirnicama [9]. Uspešno upravlјanje bezglutenskom dijetom zahteva timski pristup, uklјučujući pacijenta, porodicu, lekara, medicinsku sestru i dijetetičara [10]. Podrška deci od strane porodice utiče na poštovanje dijete bez glutena i, samim tim, im osigurava i bolјi zdravstveni kvalitet života [11,12]. ...
Introduction: Celiac disease is an autoimmune disease caused by an inadequate immune response in contact with gluten in genetically predisposed individuals. Barriers to maintaining a strict gluten-free diet arise due to several factors, the most common of which are: inadequate information, insufficient education about the disease, food contamination. Aim of the research: To determine the ways of informing parents about the celiac disease that has been diagnosed in their children, as well as to learn about the necessary procedures to improve information about gluten-free diet. Subjects and method: The study included a sample of 116 parents whose children are diagnosed with celiac disease and who are on a gluten-free diet. The place of research is the Institute for Maternal and Child Health of Serbia "Dr Vukan Cupic" in New Belgrade and the University Children's Clinic in Belgrade. The research instrument used is the Questionnaire on Parents' Awareness of Celiac Disease, which was created for the purposes of this research. Results with discussion: The results of the study show that 47.14% of parents of children with celiac disease ask for information about the proper nutrition of their children and gluten-free foods from the doctor of the institution where the child was diagnosed with the disease. In order to better understand the diagnosis of celiac disease in their child, 53.01% of parents most often chose to talk to the doctor who treats the child. Conclusion: Information on proper nutrition of children and gluten-free foods, as well as specific information on celiac disease, is requested from the doctor of the institution where the disease was diagnosed in the child and where they go for check-ups. Many complications caused by unrecognized celiac disease could be prevented by timely diagnosis and proper posture of the child, which contributes to good and adequate information.
... poor bone health, lymphoma) (1,2) . This also means a major behavioural shift in food selection, food literacy and food purchasing patterns (3)(4)(5)(6) . While it is possible to consume a nutritious GF diet (7) , this is a major challenge for children/ youth and their families. ...
There are currently no universal evidence-based nutrition guidelines that address the gluten-free (GF) diet for children/youth (4-18 years). A GF food guide was created to help children/youth with celiac disease (CD) and their families navigate the complexities of following a GF diet. Guide formation was based on pre-guide stakeholder consultations and an evaluation of nutrient intake and dietary patterns. The study objective was to conduct an evaluation on guide content, layout, feasibility and dissemination strategies from end-stakeholder users (children/youth with CD, parents/caregivers, health care professionals). This is a cross-sectional study using a multi-method approach of virtual focus groups and an online survey to conduct stakeholder evaluations. Stakeholders included children/youth (4-18 years), their parents/caregivers in the celiac community (n=273) and health care professionals (n=80) with both pediatric and CD experience from across Canada. Thematic analysis was performed on focus group responses and open-ended survey questions until thematic saturation was achieved. Chi-square and Fisher’s exact statistical analyses were performed on demographic and close-ended survey questions. Stakeholders positively perceived the guide for content, layout, feasibility, ethnicity and usability. Stakeholders found the material visually appealing and engaging with belief that it could effectively be used in multi-ethnic community and clinical-based settings. Guide revisions were made in response to stakeholder consultations to improve food selection (e.g. child-friendly foods), language (e.g. clarity) and layout (e.g. organization). The evaluation by end-stakeholders provided practical and patient-focused feedback on the guide to ensure that uptake is successful in community and clinical-based settings.
... A Gluten Free Diet (GFD) very often poses serious consequences on the social life of individuals with coeliac disease, thus making dining out really complicated, owing to the difficulty in finding glutenfree meals as well as the fear of gluten cross contamination (1). As a result, a great number of individuals with coeliac disease avoid dining out and travelling (2). ...
Background:
The Piedmont Region, the Food Hygiene and Nutrition Services of the Local Healthcare Authorities of the Piedmont Region (coordinated by ASL TO 3), and the Italian Coeliac Association Piedmont Onlus, have created a theoretical-practical training pathway for Food Business Operators to ensure a safe gluten-free meal.
Study design:
The aim of the study is to perform a retrospective analysis of the data collected in order to assess whether the Food Business Operators will be able to manage in the short, medium and long term audits (3-month audits, 6-month audits and 1-year audits) all the production stages of a gluten-free meal (storage, production.
Methods:
We have analysed the check-list used for assessing the gluten free meal, recorded from 2010 to 2016 by the staff of the Food Hygiene and Nutrition Services. They were filled out during three educational audits and they refer to 81 facilities.
Results:
Two-hundred and forty-three audits were conducted (3 per facility). During all stages of production of gluten-free meals (short, medium and long term), non-compliant aspects had decreased (not statistically significant). The data analysis showed a slight increase in non-compliant aspects after a 1-year storage, the trend of non-compliant aspects slightly decreased during the three production stages, the service stage registered a slight upward trend, and finally, during the basic requirements stage and control plan stage, non-compliant aspects were in sharp decline (statistically significant).
Conclusions:
The decrease of non-compliance guarantees safety and protection of the celiac subject, even if storage and services must be monitored more carefully in the medium term.
... The qualified health care professionals, especially the dietician, have extensive academic and practical background regarding the role of food and nutrition in the prevention, treatment, and progression of acute and chronic diseases and how disease and treatment affect food and nutritional needs; food composition preparation information; socioeconomic, psychologic, and educational factors that affect food choices and nutrition behaviour of people across their lifespan; and counselling skills to translate scientific information into laymen's terms and assist clients in gaining knowledge, self-understanding, improved decision making, and behavioural changes. So they can provide comprehensive nutrition therapy for the patient [20]. ...
Background:
Raising the knowledge level though education for a celiac disease patient's parents could improve the parent's adherence and practice and consequently recover the patient's adherence and symptoms and increase the patient's compliance.
Aim:
The present study was aimed at assessing the knowledge, attitudes, and practices (KAP) of parents who have children with celiac disease aged from 2 to 15 years old and the change in self-reported patient's adherence pre-/posteducational intervention.
Method:
This intervention study was designed as a quasiexperiment with evaluation pre-/post intervention analyses. Two educational sessions were carried for the parents of CD patients. A reliable and valid questionnaire was used to assess all independent variables pre-/post intervention. The parents were asked to complete the questionnaire pre and post the education sessions. The time between the sessions was two weeks.
Results:
100 parents were recruited, and 40 parents participated and completed the study. Baseline parent's knowledge was significantly associated with the source of information (p value = 0.02), while the patient's adherence was associated with the onset of disease (p value = 0.04). There were significant differences in the parent's KAP and patient's adherence between pre- and posteducational intervention (p value was ≤0.001, for all variables).
Conclusion:
Based on the results, this study suggested that the educational intervention increased the parent's KAP and improved the patient's adherence to the gluten-free diet significantly, which may lead to improvement in the celiac disease patients' health outcomes.
... Even with a medical prescription for a GFD, adherents should pay careful attention to the nutritional quality of their overall diets to avoid potential negative health outcomes, including under consumption of important dietary nutrients and overconsumption of saturated fats (Kupper, 2005;Thompson, Dennis, Higgins, Lee, & Sharrett, 2005;Vici, Belli, Biondi, & Polzonetti, 2016). Public health educators must address misinformation about gluten and GFDs, making it clear that a GFD is a medical prescription for chronic disease, and that following a GFD is a decision that should be discussed with a professional (ADA, 2005;Ansel, 2014;Case, 2005;Kupper, 2005). ...
Background and Purpose: Historically used as the sole treatment for celiac disease, there has been a substantial rise in popularity of the gluten-free diet (GFD) as both a diet plan and alternative form of medicine in the United States (US). Approximately 1% of the US population suffers from celiac disease, but various reports show 30% to 80% of adults have an interest in, or are currently adhering to, a GFD. This study aimed to understand this disproportion by exploring GFD adherence motivations, in addition to medical diagnoses, within a population of gluten-free followers. Methods. An anonymous, internetbased survey was administered to assess GFD motivations and adherence within the general population (n=99). Results. Of those currently following or who had previously followed a GFD, medical diagnosis was reported by only 28.6% as motivation for GFD adherence, with 60.7% reporting general health motivations, 25.0% reporting weight loss motivations, and 21.4% reporting curiosity. Conclusion. This study supports previous research suggesting that adherence to a GFD may occur for reasons outside of a medical diagnosis. Public health educators should inform individuals about risks and misconceptions associated with GFDs when implementing healthy eating programs for adults without medically diagnosed digestive conditions.
... The Academy guidelines [25] yielded the highest score in the applicability domain, providing methods to translate evidence to simple practice points and comprehensible monitoring criteria while taking into account the financial factors of implementing the guidelines. Adhering to a GFD is usually costly for the patients [11], although it might curtail health care costs [42]. As far as editorial independence is concerned, half of the guidelines [21,22,26,28À30] neglected to mention their funding sources and the conflicts of interest (COI) of each author, reducing the trustworthiness of their recommendations [43]. ...
Objective: Medical nutrition therapy (MNT), by lifelong compliance to a gluten free diet, is the only treatment of celiac disease (CD). Clinical practice guidelines (CPGs) regarding the management of CD emphasize on the role of MNT besides other treatment options. The aim of the present study was to review and critically appraise CD-specific MNT CPGs, and identify the areas in need of improvement for better adherence and outcomes.
Research Methods & Procedures: A comprehensive search was performed at Pubmed, Guidelines International Network (GIN), Google Scholar, grey literature, and websites of CD scientific organizations, for CPGs on the dietary management of CD, published in the English language.
Results: A total of 12 CPGs were retrieved and critically appraised by three independent reviewers utilizing the AGREE II instrument. All CPGs were of low quality based on AGREE II tool. Among the 12 CPGs, the NICE ones achieved the highest score and were unanimously recommended without modifications by the three reviews, while AGA, AHS, BSPGHAN, CREST and FISPGHAN CPGs received the lowest score.
Conclusions: The present study unveils the low quality of guidelines regarding the MNT of CD patients, indicating the need of updated and improved guidelines taking into consideration the proposed items of the AGREE II.
Keywords: Medical nutrition therapy; Clinical practice; Critical appraisal; Gluten-free diet; Autoimmune disease; Nutrition intervention; evidence-based dietetics; Gluten; gastrointestinal
... Gluten is ubiquitous in our food, and many food items may be contaminated with gluten [16]. Even in countries where the infrastructure for management of CeD is well established, as many as 5% to 41% of patients with CeD are not able to follow a strict GFD [37][38][39][40][41][42][43][44]. In a study, we observed that 46.7% of patients who were already on GFD remained non-adherent to it. ...
Gluten-free diet (GFD) is the only definitive treatment for patients with celiac disease (CeD). Strict adherence to GFD improves the symptoms, nutritional deficiencies, and the overall well-being of the patients. The management of CeD is truly different and unique from the treatment of other medical or surgical diseases. While prescribing a GFD is easy, the key to the success lies in the dietary counseling by a nutrition specialist/physician and maintenance of adherence to the prescribed diet by the patient. When restricting gluten from all possible sources, it is pertinent to recommend a diet that is healthy and balanced for patients with celiac disease. Those following GFD must be counseled properly on the ways of balancing their diets and of avoiding cross contamination. They should be taught how to read food labels properly and given tips for dining out or during traveling. Regular follow up with patients is required for assessing the compliance and monitoring growth and the status of recovery. In this review article, we have compiled, for the physicians and gastroenterologists, the relevant information about GFD including counseling, adherence, nutritional adequacy, and many other related issues.
... Secondly, gluten free foods are significantly more expensive (three times) [62][63][64][65] than gluten containing foods [66]. In this context, governments of different countries provide several policies to ensure equal access for all patients to a set of basic gluten free products. ...
Celiac disease (CD) is an inflammatory syndrome that affects mainly the intestine, but also other organs. This ailment is also affected by the physicochemical behavior of gluten as such. From the medical standpoint, this pathology results from a combination of genetic and environmental factors. At the same time, gliadin (the alcohol-soluble fraction of gluten) along with other related oligomers, such as 33-gliadin, present high immunogenicity and are responsible for triggering of this disease. Within CD characterization, there are mainly two different approaches to carry out this study; one focuses on its chronic phase, while the other deals with its initial stages. Although the chronic phase of CD has been well characterized, the initiation of the inflammatory process is still unclear. As this process is apparently related to the aggregation of the oligomers involved in CD, the initiation of the disease could be explained by means of clarifying their self-assembly behavior. Thus, this work addresses the clinical explanation, within the chronic approach, attempting to combine it with the physicochemical techniques used for characterization of proteins aggregates as well.
... Otro punto que se debe tomar en cuenta es que muchas veces se utilizan cantidades elevadas de grasas y azúcares para enmascarar sabores no agradables en los productos libres de gluten. Así, alimentos horneados libres de gluten se encuentran disponibles en el mercado, pero encontrar uno de calidad sigue siendo una de las cuestiones más importantes para personas intolerantes que desean adherirse completamente a una dieta libre de gluten (Case, 2005). ...
Existe un mercado interesante para la industria de los alimentos en los consumidores intolerantes al gluten. Sin embargo, no es sencillo obtener productos libres de gluten con características similares a los que tienen gluten y con el mismo costo. Es importante que en las etiquetas de los alimentos se mencionen los alérgenos utilizados en la elaboración del producto o si se emplean líneas de producción en las que se procesan ingredientes alérgenos, de manera que el consumidor se encuentre mejor informado y evite productos que puedan hacerle daño.
... This is partially due to increased cost and limited availability of gluten-free products, taste/texture of products, the complexity of the diet, and its restrictive nature [4]. Therefore, a visit with a skilled Registered Dietitian Nutritionist (RDN) is considered an essential aspect of managing the disease [2,5,6]. ...
The registered dietitian (RD) plays an integral role in helping patients manage their celiac disease (CD). The RDs were surveyed on their use of CD resources and technology (Twitter, Facebook, smartphone apps, or Internet) for their own continuing education and for use in patient education. Academic publications were the most used CD resources for self-education by the RDs. They reported using Twitter and Facebook the least and handouts the most to educate patients with CD, and technology is not a common resource for education of CD patients. The collaborative work between RDs and software developers may increase CD education efficacy by using technology.
... 5 However elimination of gluten from the diet is challenging, and referral to a knowledgeable dietitian and the provision of accurate information is essential especially regarding the preparation of food to avoid gluten contamination. 6 The restrictions of a gluten-free diet have potentially far reaching effects much beyond the choice of foods. Whether gluten-free food is available, hidden sources of gluten and gluten contamination can restrict the lifestyle of a person with CD and can have an impact on the lifestyle and quality of life for those with CD. 7 Dining out and travelling are particular challenges that have been described worldwide. ...
Background and objectives:
Coeliac disease is triggered by gluten. The only treatment is lifelong avoidance of dietary gluten. Dining out and travelling are particular challenges with a huge impact on quality of life. We examined the knowledge about coeliac disease and gluten-free food preparation among chefs and cooks, and culinary students in Dunedin, New Zealand.
Methods and study design:
Outlets serving gluten-free food were identified. The head chefs or cooks were invited to complete a questionnaire regarding demographics, education, qualification, experience and knowledge of coeliac disease and gluten-free food preparation. Ninety restaurant chefs and cooks, and 35 first-year culinary students participated.
Results:
Half of participating chefs and cooks had received no formal training, but all were aware of the term gluten-free diet. Twelve (13%) were unaware of coeliac disease, all of whom were non-European and worked at an ethnic restaurant which did not have gluten-free policies in place. There was no significant difference in awareness of coeliac disease between chefs and students (p=0.36). However, students were significantly more aware of necessary gluten-free food preparation (p=0.007) and scored better in the gluten-free quiz (p=0.01) than chefs and cooks.
Conclusions:
Awareness of coeliac disease did not necessarily mean that policies were in place to prepare contamination-free gluten-free meals. Chefs and cooks from countries with a low incidence of coeliac disease lacked knowledge about gluten-free food preparation and had difficulties recognising gluten containing foods. Patients with coeliac disease wanting to dine out should be advised to choose a restaurant with care.
... This is partially due to increased cost and limited availability of gluten-free products, taste/texture of products, the complexity of the diet, and its restrictive nature [4]. Therefore, a visit with a skilled Registered Dietitian Nutritionist (RDN) is considered an essential aspect of managing the disease [2,5,6]. ...
Background: Adherence to the gluten-free diet is the only treatment for celiac disease (CD) and some patients report lack of expertise among registered dietitian nutritionists (RDNs). Objective: To measure RDN self-reported celiac disease (CD) knowledge and preferences for resources for self-education and patient education. Methods: A cross-sectional research design was used to recruit RDNs from participating state affiliates Alaska, Colorado, Connecticut, Delaware, Montana, Nebraska, and North Dakota in 2013. A 35 item internet-based survey was distributed via Survey Monkey and included Likert scale questions based on a previous RDN allergy survey. Demographic and gluten-free diet and CD multiple-choice questions were also included. Results: Four-hundred and five registered dietitians (RDNs) who volunteered from the seven participating affiliates responded to the survey. Chi-squares were used to determine frequencies and differences in responses per variable. Pearson correlation analyses were performed to determine the correlation of age, education level, years of practice, or number of CD patients seen per week and CD self-reported knowledge. RDNs reported either moderate or high levels of knowledge for all seven self-reported knowledge topics. Over 85% of RDNs selected correct answers for five CD knowledge questions. Professional and academic publications were the most commonly used resources by RDNs for self-education whereas handouts were the most commonly used resource by RDNs for patient education. Conclusion: RDNs may need more reinforcement on identification and treatment of nutritional deficiencies of CD management.
... As mentioned above, the place of the RDNs in counseling, implementing, updating, anthropometric assessment and follow-up of the CD population is pivotal, indispensable and crucial among the team dealing with gluten-sensitive populations [4,59,60,61,62]. Their duties can be summarized, following CELIAC DISEASE letters*: ...
Dietitians play a pivotal role in the education, follow-up and navigation of the gluten-free diet for patients affected by celiac disease. Since gluten withdrawal is the cornerstone of celiac disease therapy, and since various future therapeutic strategies, are not yet on the market, the patients relay heavily on the registered dietitian nutritionists (RDNs) advice and service to cope with the gluten-free diet tough alley. Unfortunately, gluten withdrawal, nowadays, represent also a torrid time. The actual surge in incidence, wheat content, gluten intake, celiac disease-related T-cell stimulatory epitopes in wheat, usage in the processed food industries, nutritional deficiencies, changing phenotype and the fact that gluten is potentially detrimental to humankind health, make the RDNs role more complex, difficult and challenging. The present review expands on the gluten-free diet related tough alley in torrid time, which the registered dietitian nutritionists are facing when dealing with gluten-sensitive patients.
... O tratamento da doença celíaca é basicamente dietético, devendo-se excluir alimentos fontes de glúten da dieta durante toda a vida, tanto nos indivíduos sintomáticos, quanto assintomáticos (CASE, 2005;SCHUPPAN et al., 2005;RUBIO-TAPIA;. Contudo, o portador de doença celíaca deve ainda incluir outros tipos de alimentos (frutas, hortaliças, alguns derivados de leite) de forma a suprir as possíveis deficiências de nutrientes no organismo (AUTODORE; JATLA, 2009;WILD et al., 2010;CIACCI et al., 2015), além de fazer acompanhamento permanente e educação nutricional com nutricionista com experiência em doença celíaca (LEE, 2003). ...
Resumo Os celíacos encontram dificuldades na adoção de uma dieta totalmente isenta de glúten e com qualidade nutricional. Para tanto, objetivou-se desenvolver e avaliar cookies sem glúten enriquecidos com farinha de coco. A farinha de coco com elevado teor de cinzas, proteínas e lipídios pode ser utilizada para enriquecer produtos alimentícios. Foram elaborados cookies com base na composição de uma mistura da Federação Nacional das Associações de Celíacos do Brasil - Fenacelbra (“mix de farinha preparada II”) para cookies sem glúten: Padrão FP (formulação semelhante à composição do “mix de farinha preparada II” da Fenacelbra), F1 (modificação de FP com substituição da fécula de batata por 10% de farinha de coco), F2 (modificação de FP com adição de 5% de farinha de coco), F3 (modificação de FP com substituição do polvilho doce por 5% de farinha de coco). Os cookies foram avaliados quanto às características físicas (peso pós-cocção, diâmetro e espessura pós-cocção, fator de expansão, rendimento, Aw, dureza e cor – L*a*b*), físico-químicas (umidade, cinzas, proteínas, lipídios, carboidratos e valor calórico), aceitabilidade quanto aos atributos sensoriais (aceitação global, aparência, cor, aroma, sabor e textura) e atitude de compra. A adição de farinha de coco às formulações melhorou as propriedades nutricionais dos cookies sem glúten, aumentando o teor de lipídios e proteínas, e reduzindo o teor de carboidratos. Os cookies desenvolvidos apresentaram boa aceitação sensorial e intenção de compra satisfatória., A adição de 10% de farinha de coco em substituição da fécula de batata na formulação F1 não alterou as características sensoriais do produto, porém proporcionou propriedades físicas e físico-químicas superiores. Dessa forma, cookies sem glúten enriquecidos com farinha de coco constituem uma alternativa viável de alimentos destinados para pessoas portadoras de doença celíaca, mas também para quem busca produtos diferenciados e saudáveis no mercado.
... Dietitians were not specifically instructed to access resources during the survey and therefore it is unclear to what extent this occurred. On the whole, the findings suggest that further continuing professional development and education is required, as previously suggested by Zarkadas et al. [36] and Case [37]. ...
... Patients failing to maintain a gluten-free diet reflect misinformation about the restrictive nature of the diet to be followed [30]. The ideal behaviour is for patients, doctors, nutritionists and support groups to work together and coordinately so as to appropriately inform recently diagnosed celiac disease patients about the diet to follow [30]- [32]. It is fundamental that patients be immediately derived to a nutritionist specialized in celiac disease to complete the nutritional status evaluation. ...
A simple bread making technique consisting of three steps (mixing, fermentation and baking) for producing gluten-free bread was developed. Wheat starch with bacterial protease, combined with various kind of gums, was used. The relative amounts of water, fat and sugar in the formulation were optimized and the mixing time was considered as the variable to be analyzed. Results showed that water, fat and sugar amounts do influence product quality. It was also found that Methocel was the most appropriate gum for the formulation of gluten-free bread.
The only treatment for celiac disease is lifelong adherence to a gluten-free diet (GFD), and the best way to achieve adherence is through education from a registered dietitian who has expertise in celiac disease. Education practices on the GFD vary across the world and are not well studied. For over 10 years, our institution has conducted in-person small group education sessions for 1-3 patients and their families. These classes are dietitian led, didactic, and discussion based. Pre- and postsurveys done for the past 5 years showed that families' knowledge of celiac disease increased significantly and 96% of patients age 8 and above benefited from attendance. These data show that in-person, small group classes are effective for families and patients over 7 years of age. Additional study is needed to compare various models of delivering education on the GFD (especially telemedicine options), their efficacy, and barriers to delivery.
Background:
Strict adherence to a gluten free diet is the only known effective treatment for celiac disease currently. Multiple organizations recommend follow-up with a dietitian and guideline directed management after diagnosis. Few studies have evaluated follow-up post diagnosis. However, these do not include a systematic process for monitoring dietary referral among celiac disease patients. We sought to evaluate and compare the frequency of early dietary referral and guideline-directed preventive care and management for celiac disease patients managed by gastroenterologists and primary care providers.
Methods:
A retrospective chart review of celiac disease patients receiving care at a single tertiary care facility. Our primary outcome was to compare the frequency of dietary intervention between gastroenterologists and primary care providers in an outpatient setting after initial diagnosis. Multivariate analysis was performed to determine associated factors for referral for dietary intervention and recommended follow up lab work.
Results:
261 patients were included in the study, 81.6% were followed by gastroenterology and only 51% were seen by a dietitian. Patients following up with gastroenterologists had higher odds of referral for dietary intervention on multivariate analysis (OR 3.29, p value < 0.003). Only 16% of all patients completed appropriate guideline directed follow-up care.
Conclusions:
Dietary intervention and follow-up of preventive care lab work was low in celiac disease patients. There is an opportunity for further education of both primary care providers and gastroenterologists on the importance of early dietary referral and appropriate medical management at follow-up.
Background:
Food insecurity is a major public health challenge. For patients with celiac disease (CeD), food insecurity may be particularly detrimental as it threatens the cornerstone of their treatment: adoption of a gluten-free diet (GFD). We aimed to characterize the prevalence of food insecurity in patients with CeD and evaluate its impact on GFD adoption and nutritional intake.
Methods:
We analyzed data from patients with CeD participating in the US National Health and Nutrition Examination Survey (NHANES) from 2009 to 2014. Food insecurity was defined using the US Department of Agriculture 18-Item Standard Food Security Survey Module. Survey-weighted logistic regression was used to assess differences in demographic characteristics of CeD patients living with food insecurity and the impact of food security on GFD adoption. Multivariable survey-weighted linear regression was used to evaluate the effect of food insecurity on nutritional intake of macronutrients and micronutrients.
Results:
Overall, 15.9% (95% confidence interval: 10.6%, 23.1%) of patients with CeD in the United States [weighted N=2.9 million (95% confidence interval: 2.2, 3.5 million)] are food insecure. Food insecure patients with CeD were disproportionately younger, poorly educated, nonwhite, living in poverty, and were significantly less likely to adopt a GFD (24.1% vs. 67.9%, P=0.02). Food insecurity was associated with significantly lower consumption of protein, carbohydrates, fat, and most vitamins and minerals.
Conclusions:
One in 6 patients with CeD are food insecure, negatively impacting GFD adoption and the ability to meet recommended daily intake of most micronutrients. Less than one quarter of food insecure CeD patients adhere to a GFD.
This cross-sectional study aimed to evaluate and classify barriers to adherence to the gluten-free diet in 137 Iranian adults with celiac disease. We used a 23-point Likert questionnaire and exploratory factor analysis to identify and classify the barriers. Adherence to gluten-free diet was assessed by measuring the serum level of anti-tTG-IgA. The correlation between the barriers and adherence to gluten-free diet was assessed using logistic regression. A total of 117 subjects completed the study. Seven factors were extracted: "gluten-free diet restrictions," "self-awareness and social awareness," "psychological barriers," "education," "situational barriers and gatherings," "lack of access/labeling," and "cost." There was a significant correlation between the situational barriers and gatherings and nonadherence to the diet in the adjusted model (odds ratio = 1.63; 95% confidence interval [1.03, 2.54], p = .03). Nutritionists and physicians should consider these barriers when consulting patients with celiac disease.
Objective
To identify the relationship between adherence to a gluten-free diet (GFD) and demographic characteristics, knowledge, attitudes and beliefs regarding coeliac disease and GFD, experiences of following a GFD, symptoms and QoL.
Research methods & Procedures
Patients with CD were recruited from outpatient clinics. Adherence to GFD was assessed using the ‘Coeliac Dietary Adherence Test’ (CDAT) and ‘GFD-Score’ (GFD-S). Knowledge, attitudes, experiences, symptoms and QoL were assessed using existing questionnaires. Multivariate logistic regression was performed.
Results
Overall, 116 patients with CD were included (48±16 years, 70% female). Based upon the CDAT questionnaire, 58 (50%) were adequate adherers, whereas based upon GFD-S, 86 (74%) were adequate adherers. When adherence was measured using CDAT, being female was associated with lower odds of adherence (OR=0.36, p=0.028), and better emotional wellbeing was associated with higher odds of adherence (OR=1.19, p<0.001). When adherence was measured using GFD-S, membership in a support group (OR=6.17, p=0.002), stronger beliefs about the chronicity of CD (OR=1.15, p=0.059) and weaker beliefs on accident/chance causing CD (OR 1.94; p=0.05) were associated with greater odds of adherence. Difficulties when eating with family/friends (OR=0.98, p=0.005) and weaker beliefs on immunity causing of CD (OR 0.77; p=0.031) were associated with lower odds of adherence.
Conclusion
The association between gender, attending support groups, attitudes, experiences, and QoL with adherence to a GFD should be considered by healthcare professionals managing patients with CD.
Introduction: Treatment of celiac disease is a strict life-long gluten-free diet (GFD). The GFD is complex, and counseling by a dietitian is essential. The number of new referrals for GFD education has increased. We studied the feasibility of GFD teaching using distributed education.
Methods: The IWK Health Center in Halifax is the only tertiary-care pediatric hospital in the 3 Maritime provinces with GFD experienced dietitians. Families travel long distances to attend teaching sessions. Families outside the Halifax area were offered to participate in the 2.5-hour education sessions held once a month via live videoconference link at their regional hospitals. All participants were surveyed with a 10-item questionnaire assessing the content and delivery and usefulness of information.
Results: Over a 6-month period, 39 families attended the sessions, 21 locally and 18 at distributed sites across the Maritimes. The survey was completed by 26 participants (67%). All participants at both sites strongly agreed or agreed that their setting was good for learning and the information provided was easy to understand. There were no significant differences between the 2 groups on any individual questions in the 2 domains assessed (all P > 0.06).
Conclusions: Distributed education on GFD is feasible and as effective as in person education. It affords convenience and savings to families by reducing travel costs.
Celiac disease is an immune-mediated systemic disorder with enteropathy, which is triggered by the grain protein gluten in genetically predisposed individuals. Untreated it can lead to nutrient deficiencies, impaired growth, osteoporosis, and other long-term complications. The prevalence in Germany is relatively high (ca. 1.0%) and can reach up to 15% in risk groups. While the classical gastrointestinal manifestations with chronic diarrhea, malabsorption syndrome and failure to thrive only occur in a minority of affected patients, most children and adults with celiac disease show no or only unspecific symptoms, such as constipation or extraintestinal signs, e.g. iron deficiency anemia and elevated liver enzymes. If celiac specific antibodies are positive the patient should be referred to a pediatric gastroenterologist for further confirmation of the diagnosis. The only available but extremely effective treatment is still a life-long strict gluten-free diet.
Celiac disease is an immune-mediated systemic disorder with enteropathy, which is triggered by the grain protein gluten in genetically predisposed individuals. Untreated it can lead to nutrient deficiencies, impaired growth, osteoporosis, and other long-term complications. The prevalence in Germany is relatively high (ca. 1.0%) and can reach up to 15% in risk groups. While the classical gastrointestinal manifestations with chronic diarrhea, malabsorption syndrome and failure to thrive only occur in a minority of affected patients, most children and adults with celiac disease show no or only unspecific symptoms, such as constipation or extraintestinal signs, e.g. iron deficiency anemia and elevated liver enzymes. If celiac specific antibodies are positive the patient should be referred to a pediatric gastroenterologist for further confirmation of the diagnosis. The only available but extremely effective treatment is still a life-long strict gluten-free diet.
The only treatment for celiac disease is a lifelong adherence to a gluten-free diet. However, further investigation pointed towards the development of drugs (oral and injectable) that may provide new opportunities in the celiac diet.
Celiac disease is an autoimmune chronic disease characterized by gluten sensitivity, which manifests in genetically susceptible individuals. When people with celiac disease consume gluten, their body mounts an immune response that attacks the small intestine. Being so, the only known treatment for celiac disease is a lifelong strict gluten-free diet that should be complete, balanced and varied. The objetives of these study were compare prices between categories of gluten-free products and equivalents with gluten, assess costs in a family income of a gluten-free diet and compare the results with a previous study. The price per kilogram of gluten and gluten-free products was collected through online search. Prices were analyzed by product type, among seven categories (bread, pasta, flour, breakfast cereals, cookies/ cakes, cereal bars and ready meals) of all gluten-free products, and the same prices of equivalents gluten products were collected. The food prices included in the essential food basket with gluten, developed by Portuguese nutritionists association, were posteriorly adjusted to the gluten-free diet. In all categories of products analyzed gluten-free products were more expensive. Largest differences were observed in food categories such as pasta, bread and cookies categories. It was found a difference of 26% in prices when comparing gluten-free essential food basket and the gluten equivalent. The added cost for a family to follow a gluten-free diet for one month is 110€ and weekly per person is 8,6€. The present study demonstrates that, in all categories, gluten-free products studied are more expensive than equivalents gluten products. The price of the gluten-free essential food basket is greater than the equivalent with gluten, it represents more than a half of a family budget, of national minimum salary. Compared to a previous study the difference between prices of gluten-free and gluten products decreased in most categories.
In the face of America’s obesity epidemic, mobile health applications (MHAs) offer solutions for motivating users to be healthier. MHAs include both personal features for the individual user (e.g., calorie tracking) and social features, which connect the user to others (e.g., for support or competition). The present study explores the connection between both personal and social uses of MHAs and healthy behaviors. Findings indicate that the use of MHAs is positively associated with healthier overall behaviors: Personal aspects were related to healthier eating and workout behaviors, and social aspects were positively associated with only healthier workout behaviors. Perceptions of social support from others predicted healthier overall behaviors and were related to increased body satisfaction. Implications for the role of social support in MHAs are discussed.
We sometimes see manufactured bakery products on the market which are labelled as being gluten free. Why is the content of such gluten proteins of importance for the fabrication of bakery industry and for the products? The gluten proteins represent up to 80 % of wheat proteins, and they are conventionally subdivided into gliadins and glutenins. Gliadins belong to the proline and glutamine-rich prolamin family. Its role in human gluten intolerance, as a consequence of its harmful effects, is well documented in the scientific literature. The only known therapy so far is a gluten-free diet, and hence, it is important to develop robust and reliable analytical methods to quantitatively assess the presence of the identified peptides causing the so-called coeliac disease. This work describes the development of a new, fast and robust micro ion pair-LC-MS analytical method for the qualitative and quantitative determination of 30-mer toxic gliadin peptides in wheat flour. The use of RapiGest™ SF as a denaturation reagent prior to the enzymatic digestion showed to shorten the measuring time. During the optimisation of the enzymatic digestion step, the best 30-mer toxic peptide was identified from the maximum recovery after 3 h of digestion time. The lower limit of quantification was determined to be 0.25 ng/μL. The method has shown to be linear for the selected concentration range of 0.25-3.0 ng/μL. The uncertainty related to reproducibility of measurement procedure, excluding the extraction step, has shown to be 5.0 % (N = 12). Finally, this method was successfully applied to the quantification of 30-mer toxic peptides from commercial wheat flour with an overall uncertainty under reproducibility conditions of 6.4 % including the extraction of the gliadin fraction. The results were always expressed as the average of the values from all standard concentrations. Subsequently, the final concentration of the 30-mer toxic peptide in the flour was calculated and expressed in milligrams per gram unit. The determined, calculated concentration of the 30-mer toxic peptide in the flour was found to be 1.29 ± 0.37 μg/g in flour (N = 25, s y = 545,075, f = 25 - 2 (t = 2.069), P = 95 %, two-sided).
Zöliakie ist eine genetisch bedingte Glutenintoleranz, die mit einer lebenslangen immunologischen Reaktion verschiedener Organe — insbesondere des Dünndarms — bei Zufuhr bestimmter Proteinteile von Getreide (insbesondere Weizen, Roggen, Gerste) einhergeht. Psychosoziale Faktoren haben keine ursächliche Bedeutung. Die Prävalenz psychischer Störungen bei Zöliakie ist erhöht. Eine strikte glutenfreie Diät bringt in über 95% eine rasche symptomatische Besserung der körperlichen Beschwerden und meist auch organische Heilung. Ob eine glutenfreie Kost zu einer Besserung zöliakieassoziierter psychischer Störungen führt, ist nicht sicher erwiesen. Eine glutenfreie Diät ist meist aufwändig für Menschen der westlichen Welt und kann zu psychosozialen Belastungen führen. Die Lebensqualität bei der Zöliakie wird durch psychosoziale Faktoren (psychische Komorbidität) mitbestimmt.
Celiac disease (CD) is now recognized as one of the most common genetic diseases of humankind. Furthermore, and contrary to previous opinion that categorized CD as a primarily pediatric disorder, CD can occur at any age and can present with a wide range of clinical manifestations. Missed and delayed CD diagnoses are common for a number of reasons, one of which is a lack of CD awareness among primary healthcare clinicians. The purpose of this article is to increase clinicians knowledge and awareness of CD.
Background:
While adherence to gluten-free diet (GFD) is essential for effective control of celiac disease, the level of adherence to GFD may vary. We assessed the level of adherence to GFD and identified barriers to adherence in patients with celiac disease.
Methods:
Both treatment-naive and follow up patients with celiac disease were recruited from a celiac disease clinic. All the patients were assessed for symptom improvement using celiac symptom index (CSI), weight, and hemoglobin; adherence to GFD using detailed dietary history and food-labeled quiz questionnaire; identification of barriers to GFD using a self-administered 36-point questionnaire; and quality of life using a standard 36-item short form (SF36) questionnaire.
Results:
Among the patients who were already on GFD, only 53.3 % maintained an excellent or good level of adherence, which increased to 92.4 % at 6 months with repeated counseling. Among the treatment-naive patients, 64.8 % maintained either excellent or good compliance at 1 month after first counseling, which increased to 96.3 % at 6 months with repeated counseling. The most common barrier to adherence was non-availability of GFD. Certain barriers could be modified with repeated counseling and education. Response to GFD, as measured by CSI, gain in weight, and improvement in hemoglobin, was better in those having either excellent or good compliance to GFD compared to those who remained poorly adherent.
Conclusions:
Repeated counseling increased the level of adherence to GFD.
Celiac disease is the most common severe food intolerance in the Western world and is due to gluten ingestion in genetically susceptible children and adults. Intestinal biopsy is the golden standard for evaluation of mucosal damage associated with celiac disease. Gluten-free diet is the key treatment for celiac disease. Data on the long-term control of celiac disease are few and limited to small series of patients. The study reports data on the control of celiac disease and on its correlates in a large cohort of celiac adults during long-term treatment with gluten-free diet.
The study cohort comprises 91 men and 299 women having undergone treatment with a gluten-free diet for at least 2 years and with complete records for visits at the time of diagnosis of celiac disease (baseline). Data collection included gender, age, education, weight, bowel habit, blood hemoglobin, plasma albumin and cholesterol, serum antiendomysium antibodies (EMA), dietary compliance to gluten-free diet (coded as good, low, or very low), and intestinal damage at biopsy (coded as absent, mild, or severe).
The duration of follow-up was 6.9 +/- 7.5 years (mean +/- SD, range 2-22 years). At follow-up visit, intestinal damage was absent in 170 patients (43.6%), mild in 127 (32.6%), and severe in 93 (23.8%). At follow-up, intestinal damage was significantly associated with dietary compliance, EMA, and plasma albumin (follow-up value and change value from baseline to follow-up). Baseline education significantly predicted dietary compliance and intestinal damage at follow-up.
Celiac disease is often poorly controlled in the majority of patients on long-term treatment with a gluten-free diet as demonstrated by intestinal biopsy. Lack of adherence to strict gluten-free diet is the main reason of poorly controlled disease in adults. Laboratory and clinical information have a high positive predictive value and low negative predictive value for intestinal damage on long-term treatment. Dietary compliance as assessed by interview is the best marker of celiac disease control due to low cost, noninvasivity, and strong correlation with intestinal damage.
Celiac disease may manifest with a variety of symptoms which can result in delays in diagnosis. Celiac disease is associated with a number of other medical conditions. The last national survey of members of the Canadian Celiac Association (CCA) was in 1989. Our objective was to determine the feasibility of surveying over 5,000 members of the CCA, in addition to obtaining more health related information about celiac disease.
The Professional Advisory Board of the CCA in collaboration with the University of Ottawa developed a comprehensive questionnaire on celiac disease. The questionnaire was pre-tested and then a pilot survey was conducted on members of the Ottawa Chapter of the CCA using a Modified Dillmans' Total Design method for mail surveys.
We had a 76% response to the first mailout of the questionnaire. The mean age of participants was 55.5 years and the mean age at diagnosis was 45 years. The majority of respondents presented with abdominal pain, diarrhea, fatigue or weight loss. Prior to diagnosis, 30% of respondents consulted four or more family doctors. Thirty seven percent of individuals were told they had either osteoporosis or osteopenia. Regarding the impact of the gluten-free diet (GFD), 45% of individuals reported that they found following a GFD was very or moderately difficult. The quality of life of individuals with celiac disease was comparable to the mean quality of life of Canadians.
On the basis of our results, we concluded that a nationwide survey is feasible and this is in progress. Important concerns included delays in the diagnosis of celiac disease and the awareness of associated medical conditions. Other issues include awareness of celiac disease by health professionals and the impact of the GFD on quality of life. These issues will be addressed further in the national survey.
Celiac sprue is a life-long inflammatory condition of the gastrointestinal tract that affects the small intestine in genetically susceptible individuals. The prevalence in Northern Europe is approximately 1:300, whereas in the United States it occurs less frequently. A small intestinal biopsy is mandatory to confirm the diagnosis. Treatment involves a strict gluten-free diet that excludes wheat, rye, and barley and that should be supervised by a dietician. Follow-up is important because of potential long-term complications.
Acceptance, a positive "can-do" attitude and a clear understanding of the gluten-free (GF) diet are key components to living a healthy GF life for a patient with celiac disease (CD). The gastroenterologist, primary care physician and the dietitian all share in the responsibilities of clinical and nutritional assessment, treatment of nutrient deficiencies and a thorough teaching of the GF diet and lifestyle. This article introduces the complexities of the GF diet and addresses specific nutritional considerations that may affect a person with CD, including food intolerances, vitamin and mineral supplementation, fiber intake, and gastrointestinal complaints. A wide range of resources is also provided.
Background: Serum antibodies to tissue transglutaminase (tTGA) are reported to have high sensitivity and specificity for coeliac disease and to correlate closely with endomysial antibodies (EmA). We assessed their performance in a coeliac population with a high proportion of EmA-negative patients, who have been under-represented in previous studies. Methods: We used a commercial ELISA kit to test for IgA class tTGA in sera from a population of 73 untreated coeliac patients with normal serum IgA and a high percentage (19%) EmA-negative, taking 58 patients with normal duodenal biopsies as controls. EmA was measured using indirect immunofluorescence. Results: Forty-six (63%) patients with villous atrophy (VA) had both tTGA and EmA. However, when considered separately, sensitivities of tTGA and EmA for VA were similar (75% versus 81%) and both had high specificity (98% versus 97%). As 9 patients were tTGA-positive only and 13 had EmA only, selection of patients for biopsy on the presence of either antibody wo...
OBJECTIVES:
Nonresponse or relapse of symptoms is common in patients with celiac disease treated with gluten free diet. Refractory sprue (RS) is defined as initial or subsequent failure of a strict gluten-free diet to restore normal intestinal architecture and function in patients who have celiac-like enteropathy. The aims of this study were: 1) to identify causes of persistent symptoms in patients referred with presumed diagnosis of nonresponsive celiac disease (NCD); and 2) to characterize patients with true RS.
METHODS:
Patients were identified who had been systematically evaluated for NCD between January 1997, and May 2001. Patient records and small bowel biopsy results were reviewed.
RESULTS:
A total of 55 patients were referred with a presumed diagnosis of NCD. Six did not have celiac disease and had other diseases responsible for their symptoms. Diarrhea, abdominal pain, and weight loss were the most common reasons for evaluation in cases of NCD, whereas weight loss, steatorrhea, and diarrhea were the most common presenting features of RS (nine patients). Of the 49 patients with celiac disease, 25 were identified as having gluten contamination. Additional diagnoses accounting for persistent symptoms included: pancreatic insufficiency, irritable bowel syndrome, bacterial overgrowth, lymphocytic colitis, collagenous colitis, ulcerative jejunitis, T-cell lymphoma, pancreatic cancer, fructose intolerance, protein losing enteropathy, cavitating lymphadenopathy syndrome, and tropical sprue.
CONCLUSIONS:
Based on this study, we conclude the following: 1) gluten contamination is the leading reason for NCD; 2) of NCD cases, 18% are due to RS; and 3) alternative diseases or those coexistent with celiac disease and gluten contamination should be ruled out before a diagnosis of RS is made.
The objective of this study was to determine the effects of a gluten-free diet, examining food consumption and limitations on quality of life for those with celiac disease. Twenty-nine items on self-administered questionnaires queried demographics, lifestyle, and food use. Some items were from the Rand Survey (Rand Corporation, Santa Monica, CA). Most responses used three- or five-point Likert scales. They were mailed to members of the Westchester Celiac Sprue Support Group. Of the 274 responses, 253 were usable and were the basis of the compiled results. Seventy-four percent of the respondents were female; 42% were between the ages of 36 and 55 years of age, and 46% were more than 55 years of age. Frequencies and cross-tabulations indicated several areas of negative impact in maintaining a gluten-free diet. They included the difficulties of dining out (86%), travel (82%), and impact on family (67%) and less of a negative impact on career or work (41%). The gluten-free diet impacted various lifestyle aspects of the quality of life for individuals with celiac disease.
Celiac disease is a gluten-sensitive enteropathy with a broad spectrum of clinical manifestation, and most celiac patients respond to a gluten-free diet (GFD). However, in some rare cases celiacs continue to experience GI symptoms after GFD, despite optimal adherence to diet. The aim of our study was to evaluate the causes of persistence of GI symptoms in a series of consecutive celiac patients fully compliant to GFD.Methods
We studied 15 celiac patients (five men, 10 women, mean age 36.5 yr, range 24–59 yr) who continued to experience GI symptoms after at least 6–8 months of GFD (even if of less severity). Antigliadin antibody (AGA) test, antiendomysial antibody (EMA) test, and sorbitol H2-breath test (H2-BT), as well as esophagogastroduodenoscopy (EGD) with histological evaluation, were performed before starting GFD. Bioptic samples were obtained from the second duodenal portion during EGD, and histopathology was expressed according to the Marsh classification. To investigate the causes of persistence of GI symptoms in these patients, we performed AGA and EMA tests, stool examination, EGD with histological examination of small bowel mucosa, and sorbitol-, lactose-, and lactulose H2-breath tests.ResultsHistology improved in all patients after 6–8 months of GFD; therefore, refractory celiac disease could be excluded. One patient with Marsh II lesions was fully compliant to his diet but had mistakenly taken an antibiotic containing gluten. Two patients showed lactose malabsorption, one patient showed Giardia lamblia and one patient Ascaris lumbricoides infestation, and 10 patients showed small intestinal bacterial overgrowth (SIBO) by lactulose H2-BT. We prescribed a diet without milk or fresh milk–derived foods to the patient with lactose malabsorption; we treated the patients with parasite infestation with mebendazole 500 mg/day for 3 days for 2 consecutive wk; and we treated the patients with SIBO with rifaximin 800 mg/day for 1 wk. The patients were re-evaluated 1 month after the end of drug treatment (or after starting lactose-free diet); at this visit all patients were symptom-free.Conclusions
This study showed that SIBO affects most celiacs with persistence of GI symptoms after gluten withdrawal.
RationaleTo reduce the risk for wheat-allergic and celiac patients while allowing them the maximum number of food products in their diet, determining the presence of wheat gluten in non-wheat-containing, “wheat-free”, “gluten-free” foods/ingredients is necessary.
The objective of this study was to determine the effects of a gluten-free diet, examining food consumption and limitations on quality of life for those with celiac disease. Twenty-nine items on self-administered questionnaires queried demographics, lifestyle, and food use. Some items were from the Rand Survey (Rand Corporation, Santa Monica, CA). Most responses used three- or five-point Likert scales. They were mailed to members of the Westchester Celiac Sprue Support Group. Of the 274 responses, 253 were usable and were the basis of the compiled results. Seventy-four percent of the respondents were female; 42% were between the ages of 36 and 55 years of age, and 46% were more than 55 years of age. Frequencies and cross-tabulations indicated several areas of negative impact in maintaining a gluten-free diet. They included the difficulties of dining out (86%), travel (82%), and impact on family (67%) and less of a negative impact on career or work (41%). The gluten-free diet impacted various lifestyle aspects of the quality of life for individuals with celiac disease.
The clinical spectrum of adults with celiac disease in the United States, where the disease is considered rare, is not known. We sought this information by distributing a survey.
A questionnaire was distributed by way of a celiac newsletter, directly to celiac support groups, and through the Internet.
Respondents (1,612) were from all United States except one. Seventy-five percent (1,138) were biopsy proven. Women predominated (2.9:1). The majority of respondents were diagnosed in their fourth to sixth decades. Symptoms were present a mean of 11 yr before diagnosis. Diarrhea was present in 85%. Diagnosis was considered prompt by only 52% and 31% had consulted two or more gastroenterologists. Improved quality of life after diagnosis was reported by 77%. Those diagnosed at age > or = 60 yr also reported improved quality of life. Five respondents had small intestinal malignancies (carcinoma 2, lymphoma 3) accounting for a relative risk of 300 (60-876) for the development of lymphoma and 67 (7-240) for adenocarcinoma.
Patients with celiac disease in the United States have a long duration of symptoms and consider their diagnosis delayed. Improved quality of life after diagnosis is common. An increased risk of developing small intestine malignancies is present.
For patients with coeliac disease, adherence to a gluten-free diet (GFD) is essential to restore the intestinal mucosa. It is less clear whether this ensures well-being of the patient. We have therefore assessed aspects of the quality of life of adult coeliac patients who had been on a GFD for 10 years.
By means of the Short Form 36 Health Survey (SF-36), the subjective health status was measured in 89 adult coeliac patients (61% women) aged 35-74 years. Patients shown to be in histologic remission (n=60) were evaluated by means of the Gastrointestinal Symptom Rating Scale (GSRS).
The coeliac patients scored significantly lower in the SF-36 than general population, notably within the General Health and Vitality domains. The low scoring was confined to the female patients, who also reported significantly more gastrointestinal symptoms in the GSRS than the male coeliacs. The functional status and perceived health of the coeliac patients appeared unrelated to their biopsy findings.
After 10 years on a GFD adult coeliac patients fail to attain the same degree of subjective health as the general population. This is particularly true for female patients and suggests that factors beyond normalization of the intestinal mucosa are of importance for the perceived health status of coeliacs diagnosed in adult life.
Celiac disease is a permanent intolerance to ingested gluten that results in immunologically mediated inflammatory damage to the small-intestinal mucosa. Celiac disease is associated with both human leukocyte antigen (HLA) and non-HLA genes and with other immune disorders, notably juvenile diabetes and thyroid disease. The classic sprue syndrome of steatorrhea and malnutrition coupled with multiple deficiency states may be less common than more subtle and often monosymptomatic presentations of the disease. Diverse problems such as dental anomalies, short stature, osteopenic bone disease, lactose intolerance, infertility, and nonspecific abdominal pain among many others may be the only manifestations of celiac disease. The rate at which celiac disease is diagnosed depends on the level of suspicion for the disease. Although diagnosis relies on intestinal biopsy findings, serologic tests are useful as screening tools and as an adjunct to diagnosis. The treatment of celiac disease is lifelong avoidance of dietary gluten. Gluten-free diets are now readily achievable with appropriate professional instruction and community support. Both benign and malignant complications of celiac disease occur but these can often be avoided by early diagnosis and compliance with a gluten-free diet.
We have investigated the health-related quality of life of children with celiac disease (n = 133) using two generic and one disease-specific questionnaires. In general, the children reported an adequate quality of life, similar to that of the reference sample (n = 1183).
The only known treatment for celiac disease is lifelong avoidance of dietary gluten. For many sufferers from celiac disease, this may be difficult to achieve. The purpose of this study was to analyse dietary habits and related problems of adults afflicted with celiac disease. A questionnaire was mailed to 617 current and former members of the Quebec Celiac Foundation to document health, dietary habits, sources of celiac disease treatment information, daily concerns, and level of difficulty in complying with a gluten-free diet. The final sample size was 234 (75% female). Results indicated that over 35% of participants experienced intestinal discomfort at least twice a week. In addition, 66% felt that their consumption of grain products was insufficient. Only 44% said they had received from dietitians a large quantity of information about celiac disease treatment, and only 57% had a high level of confidence in the information received from dietitians. Thirty-six percent reported difficulty in complying with the gluten-free diet. According to a probit analysis, larger region of residence (p<0.02) and concern about preparing meals (p<0.005) were directly related to difficulty in complying, while older age (p<0.05), satisfaction with gluten-free products (p<0.01), and a high level of confidence in treatment information from gastroenterologists and dietitians (p<0.005) were inversely associated with compliance difficulty. Awareness of these results should encourage dietitians to improve their skills in treating celiac disease.
Coeliac patients improve vastly when started on a gluten-free diet. After 10 years. however, women show a lower level of subjective health than men do. We investigated whether this could be explained by differences in the perceived disease burden.
We studied 68 coeliac patients (34 women) (mean age 57 years, range 32-75) and matched type-2 diabetes controls treated for a mean of 10 years. They were examined by a 9-item Burden of Illness (BI) protocol comprising perceived worries, restrictions and subjective outcome. The subjective health was assessed with the Short Form 36 Health Survey (SF-36) questionnaire.
The importance of complying with the diet was ranked similarly high by male and female coeliac patients. However, women were less satisfied with the outcome at 10 years than men were, and expressed more concern about the impact on socializing with friends and having to abstain from important things in life. None of these aspects distinguished male and female diabetic patients. Coeliac women showed a higher BI sum score than men did, and this was inversely related to their SF-36 General health, Vitality and Mental Health scores.
Coeliac women adhering to the treatment regimen for several years perceive the disease burden to be worse than men do. In the light of similar differences in their quality of life, inquiry is warranted into the way coeliac men and women are coping with the disorder.
Since the advent of serologic testing for celiac disease, most persons who receive a diagnosis of celiac disease have few or no symptoms. Although pathologic changes of celiac disease resolve on a gluten-free diet, how a gluten-free diet affects the quality of life for patients with screen-detected celiac disease is unclear.
To evaluate the effect of a gluten-free diet on the quality of life of patients with screen-detected celiac disease.
Prospective study of patients before and 1 year after initiating a gluten-free diet.
19 patients with screen-detected celiac disease (found by serologically testing first-degree relatives of celiac patients) and 21 consecutive patients with symptom-detected disease. In all cases, celiac diagnosis was confirmed by finding villous atrophy and crypt hyperplasia on small-bowel biopsy.
Gluten-free diet (explained during a single physician visit).
Gastrointestinal Symptoms Rating Scale (GSRS), in which scores range from 0 to 6 (higher scores represent worse symptoms); and quality of life measured with the Psychological General Well-Being Questionnaire (PGWB). Scores range from 22 to 132 (higher scores mean greater well-being).
At baseline, patients with symptom-detected celiac disease had poorer quality of life and more gastrointestinal symptoms than those with screen-detected celiac disease. Reported compliance with the gluten-free diet was good. All mucosal lesions of the small bowel had resolved at the follow-up biopsy. After 1 year of following the diet, quality of life for patients with screen-detected disease significantly improved (mean PGWB score increased from 108 to 114; P <0.01). A similar increase was noted in patients with symptom-detected disease (mean PGWB score increased from 92 to 103; P <0.01). Gastrointestinal symptoms also improved in patients with screen-detected disease and in patients with symptom-detected disease (mean GSRS scores decreased from 1.8 to 1.4 and from 2.6 to 1.9, respectively; P <0.01 for both comparisons).
Gluten-free diet was associated with improved quality of life for patients with symptom-detected celiac disease and patients with screen-detected celiac disease. Concerns about the burden of a gluten-free diet, at least over the short term, may be unfounded.
Nonresponse or relapse of symptoms is common in patients with celiac disease treated with gluten free diet. Refractory sprue (RS) is defined as initial or subsequent failure of a strict gluten-free diet to restore normal intestinal architecture and function in patients who have celiac-like enteropathy. The aims of this study were: 1) to identify causes of persistent symptoms in patients referred with presumed diagnosis of nonresponsive celiac disease (NCD); and 2) to characterize patients with true RS.
Patients were identified who had been systematically evaluated for NCD between January 1997, and May 2001. Patient records and small bowel biopsy results were reviewed.
A total of 55 patients were referred with a presumed diagnosis of NCD. Six did not have celiac disease and had other diseases responsible for their symptoms. Diarrhea, abdominal pain, and weight loss were the most common reasons for evaluation in cases of NCD, whereas weight loss, steatorrhea, and diarrhea were the most common presenting features of RS (nine patients). Of the 49 patients with celiac disease, 25 were identified as having gluten contamination. Additional diagnoses accounting for persistent symptoms included: pancreatic insufficiency, irritable bowel syndrome, bacterial overgrowth, lymphocytic colitis, collagenous colitis, ulcerative jejunitis, T-cell lymphoma, pancreatic cancer, fructose intolerance, protein losing enteropathy, cavitating lymphadenopathy syndrome, and tropical sprue.
Based on this study, we conclude the following: 1) gluten contamination is the leading reason for NCD; 2) of NCD cases, 18% are due to RS; and 3) alternative diseases or those coexistent with celiac disease and gluten contamination should be ruled out before a diagnosis of RS is made.
Celiac disease is a gluten-sensitive enteropathy with a broad spectrum of clinical manifestation, and most celiac patients respond to a gluten-free diet (GFD). However, in some rare cases celiacs continue to experience GI symptoms after GFD, despite optimal adherence to diet. The aim of our study was to evaluate the causes of persistence of GI symptoms in a series of consecutive celiac patients fully compliant to GFD.
We studied 15 celiac patients (five men, 10 women, mean age 36.5 yr, range 24-59 yr) who continued to experience GI symptoms after at least 6-8 months of GFD (even if of less severity). Antigliadin antibody (AGA) test, antiendomysial antibody (EMA) test, and sorbitol H2-breath test (H2-BT), as well as esophagogastroduodenoscopy (EGD) with histological evaluation, were performed before starting GFD. Bioptic samples were obtained from the second duodenal portion during EGD, and histopathology was expressed according to the Marsh classification. To investigate the causes of persistence of GI symptoms in these patients, we performed AGA and EMA tests, stool examination, EGD with histological examination of small bowel mucosa, and sorbitol-, lactose-, and lactulose H2-breath tests.
Histology improved in all patients after 6-8 months of GFD; therefore, refractory celiac disease could be excluded. One patient with Marsh II lesions was fully compliant to his diet but had mistakenly taken an antibiotic containing gluten. Two patients showed lactose malabsorption, one patient showed Giardia lamblia and one patient Ascaris lumbricoides infestation, and 10 patients showed small intestinal bacterial overgrowth (SIBO) by lactulose H2-BT. We prescribed a diet without milk or fresh milk-derived foods to the patient with lactose malabsorption; we treated the patients with parasite infestation with mebendazole 500 mg/day for 3 days for 2 consecutive wk; and we treated the patients with SIBO with rifaximin 800 mg/day for 1 wk. The patients were re-evaluated 1 month after the end of drug treatment (or after starting lactose-free diet); at this visit all patients were symptom-free.
This study showed that SIBO affects most celiacs with persistence of GI symptoms after gluten withdrawal.
Recent epidemiological studies primarily from Europe document that adult celiac disease often lacks the classic presentation of steatorrhea and weight loss. There are few surveys of adult celiac disease in the United States. We surveyed the large population of a nationwide patient support group to determine their disease presentations. In the initial survey (N = 1032 respondents), the median age at onset was 46 years, and the diagnosis of adult celiac disease was often delayed (median 12 months, with 21% delayed over 10 years). Only 32% of adults were underweight, and only about 50% reported frequent diarrhea and weight loss. A second survey documented that common presenting symptoms were fatigue (82%), abdominal pain (77%), bloating or gas (73%), and anemia (63%). Initial physician diagnoses were often irritable bowel syndrome (37%), psychological disorders (29%), and fibromyalgia (9%). These initial presentations are similar to those in Europe and often resemble irritable bowel syndrome.
Coeliac disease is a genetically-determined chronic inflammatory intestinal disease induced by an environmental precipitant, gluten. Patients with the disease might have mainly non-gastrointestinal symptoms, and as a result patients present to various medical practitioners. Epidemiological studies have shown that coeliac disease is very common and affects about one in 250 people. The disease is associated with an increased rate of osteoporosis, infertility, autoimmune diseases, and malignant disease, especially lymphomas. The mechanism of the intestinal immune-mediated response is not completely clear, but involves an HLA-DQ2 or HLA-DQ8 restricted T-cell immune reaction in the lamina propria as well as an immune reaction in the intestinal epithelium. An important component of the disease is the intraepithelial lymphocyte that might become clonally expanded in refractory sprue and enteropathy-associated T-cell lymphoma. Study of the mechanism of the immune response in coeliac disease could provide insight into the mechanism of inflammatory and autoimmune responses and lead to innovations in treatment.
Psychiatric symptoms, common in untreated coeliac disease patients, may improve after gluten withdrawal.
To estimate the incidence of psychiatric disorders in coeliac disease patients on gluten withdrawal and to evaluate: (1) the psychological weight of a chronic disease that involves a restrictive diet and a limited life style; (2) the acceptance of the disease; (3) the effects of both disease and diet on behaviour and quality of life.
Three groups of 100 patients (coeliac disease patients, diabetic patients and healthy controls, respectively) were assessed by means of a professional semi-structured diagnostic interview based on DSM-IV criteria. This interview, together with specific psychiatric questionnaires, ruled out axis I or II psychopathological disturbances.
The modified Self-rating Depression Scale and State and Trait Anxiety Inventory Y2 scores were significantly higher in both coeliac and diabetic patients than in healthy controls. The duration of gluten restriction was related to significantly higher modified Self-rating Depression Scale scores in patients with a more recent diagnosis. Quality of life was poorer in both coeliac and diabetic patients than in healthy controls and significantly correlated with anxiety. The Illness Behaviour Questionnaire showed a high psychological and somatic perception of illness in both coeliac and diabetic patients. Its subscale scores correlated significantly with anxiety and depression symptoms.
In coeliac disease, affective disorders should be ascribed to difficulties in adjusting to the chronic nature of the disease rather than directly to the disease itself, thus giving an indication for preventive liaison psychiatric interventions.
As much as 1% of the gluten-consuming world is gluten-intolerant. New screening methods are increasingly identifying gluten intolerance in individuals previously free from health problems. The often-abrupt major change in diet may adversely affect the patient's quality of life. Our aim was to evaluate self-perceived quality of life in a large cohort of adult celiac patients after at least one year of a gluten-free diet. In all 581 members (410 females) of five regional celiac societies were on a gluten-free regimen for at least one year. In this cross-sectional study, a modified version of the Zung Self-Rating Depression Scale was administered to the 581 patients from five Italian regions. Most patients correctly defined celiac disease, and compliance with the gluten-free diet was high, although reporting bias cannot be excluded. Most felt well (83.6% "very well" and "well"); consequently, anxiety and depression scores were low. Happiness also scored low. Most participants did not feel that a gluten-free life differentiated them from the general population. Women and patients diagnosed after 20 years of age had better dietary compliance, but more problems in their social life. Happiness scores were higher in patients diagnosed before 20 years of age. Anxiety and depression were infrequent in this group; however, anxiety was frequently related to feeling different from the general population, and depression to an unsatisfactory sexual life. In conclusion, celiac disease does not appear to be associated to a low level of self-perceived quality of life in members of the Italian Celiac Society.
Canadian celiac health survey: pediatric data
- M Rashid
- A Cranney
- I Graham
- M Zarkadas
- C Switzer
- S Case
- M Malloy
- R Warren
- Butzner
Rashid M, Cranney A, Graham I, Zarkadas M, Switzer C, Case S, Malloy M, Warren R, Butzner D. Canadian celiac health survey: pediatric data. J Pediatr Gastroenterol Nutr 2003;37:A127.
Institute of Medicine urges Medicare coverage of Medical Nutrition Therapy Address requests for reprints to: Shelley Case, BSc, RD, Case Nutrition Consulting, 1940 Angley Court, Regina, Saskatchewan, S4V 2V2 Canada. e-mail: info@glutenfreediet.ca
- T Fox
Fox T. Institute of Medicine urges Medicare coverage of Medical Nutrition Therapy. J Am Diet Assoc 2000;100:166. Address requests for reprints to: Shelley Case, BSc, RD, Case Nutrition Consulting, 1940 Angley Court, Regina, Saskatchewan, S4V 2V2 Canada. e-mail: info@glutenfreediet.ca; fax: (306) 751-1000. S134 SHELLEY CASE GASTROENTEROLOGY Vol. 128, No. 4
Address requests for reprints to: Shelley Case, BSc, RD, Case Nutrition Consulting e-mail: info@glutenfreediet.ca
Address requests for reprints to: Shelley Case, BSc, RD, Case Nutrition Consulting, 1940 Angley Court, Regina, Saskatchewan, S4V 2V2
Canada. e-mail: info@glutenfreediet.ca; fax: (306) 751-1000.
- A Cranney
- M Zarkadas
- Id Graham
- Re Warren
Cranney A, Zarkadas M, Graham ID, Warren RE, et al. Canadian
Celiac Health Survey. Abstract presented at 11th International
Symposium on Coeliac Disease, Belfast, Ireland. April 28 –30,
2004.
Nutritional assessment and care of celiac disease. American Dietetic Association Clinical Connections
- A Lee
Lee A. Nutritional assessment and care of celiac disease. American
Dietetic Association Clinical Connections, Winter 2003.
Long-term follow-up of celiac adults on gluten-free diet
- Ciacci
Affective disorders and quality of life in adult coeliac disease patients on a gluten-free diet
- Fera
Characteristics of adult celiac disease in the USA
- Green
Living with coeliac disease
- Hallert
Etiology of nonresponsive celiac disease
- Abdulkarim
Quality of life of adult coeliac patients treated for 10 years
- Hallert
Quebecers with celiac disease
- Lamontagne