Long‐term health and treatment outcomes in adult coeliac disease patients diagnosed by screening in childhood

Kivelä, Laura; Popp, Alina; Arvola, Taina; Huhtala, Heini; Kaukinen, Katri; Kurppa, Kalle

doi:10.1177/2050640618778386

Cited by 27 publications

(29 citation statements)

References 35 publications

(92 reference statements)

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“…Furthermore, a long diagnostic delay may increase the risk of poor clinical response [ 73 , 88 , 89 ]. This issue is less well defined in screen-detected children, but there is data showing that they may also experience unrecognized symptoms, including extraintestinal manifestations [ 90 , 91 ], and benefit from an early diagnosis [ 91 , 92 , 93 , 94 ].…”

Section: Importance Of Early Diagnosismentioning

confidence: 99%

Extraintestinal Manifestations of Celiac Disease: Early Detection for Better Long-Term Outcomes

et al. 2018

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Population-based screening studies have shown celiac disease to be one of the most common chronic gastrointestinal diseases. Nevertheless, because of the diverse clinical presentation, the great majority of patients remain unrecognized. Particularly difficult to identify are the multifaceted extraintestinal symptoms that may appear at variable ages. Although the pathogenesis and long-term outcome of these manifestations are still poorly established, there is some evidence that unrecognized celiac disease predisposes to severe complications if not diagnosed and prevented with an early-initiated gluten-free diet. Therefore, it is of utmost importance that physicians of different disciplines learn to recognize celiac disease in individuals with non-gastrointestinal symptoms. In the future, more studies are needed to clarify the factors affecting development and prognosis of the extraintestinal manifestations.

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Section: Importance Of Early Diagnosismentioning

confidence: 99%

Extraintestinal Manifestations of Celiac Disease: Early Detection for Better Long-Term Outcomes

et al. 2018

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“…Screening-detected CD patients are a subgroup of patients that experience more difficulty accepting the diagnosis and permanent dietary restriction since its justification, in the absence of symptoms, is less evident than in symptomatic patients that experience immediate improvement in health when adhering to GFD [ 66 ]. They report a decreased perception of health on a GFD [ 6 ] and may feel less motivated to adhere to the diet than symptomatic patients [ 67 ].…”

Section: Is There a Way Towards Gluten Reintroduction In Celiac DImentioning

confidence: 99%

“…They report a decreased perception of health on a GFD [ 6 ] and may feel less motivated to adhere to the diet than symptomatic patients [ 67 ]. Accordingly, a recent study published in August 2018 studied the long-term health and treatment outcomes in screening-detected CD patients [ 66 ]. At a median of 18.5 years after diagnosis, 236 patients completed follow-up questionnaires.…”

Section: Is There a Way Towards Gluten Reintroduction In Celiac DImentioning

confidence: 99%

Gluten-Free Diet in Celiac Disease—Forever and for All?

et al. 2018

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The gluten-free diet is the only effective treatment available for celiac disease. However, it is difficult to adhere to and a closer look on the diet’s implementation and indications reveals several ambiguities: Not only is there controversy on the threshold of gluten that can be tolerated in the frame of a strict gluten-free diet, but it is also unclear whether the gluten-free diet is an appropriate treatment in patient subgroups with asymptomatic or potential celiac disease. Reports from a number of research groups suggest that a certain proportion of patients may effectively develop tolerance to gluten and thus become suitable for gluten reintroduction over time. In this review, we set out to create an overview about the current state of research as regards the definition of a strict gluten-free diet in terms of the gluten thresholds considered tolerable and the indication for a gluten-free diet in the absence of histological abnormalities or symptoms. Furthermore, we discuss the concept that a gluten-free diet must be followed for life by all patients.

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“…Transitioning adolescents and young adults with chronic rare liver diseases can be complex. [10] There is no uniform model for successful transition, but expert opinion suggests that a transition program enabling an increasing responsibility for health management is important. Expert recommendations support a transition process that starts in early adolescence, and provides continuous guidance and support.…”

Section: Plans and Goalsmentioning

confidence: 99%

Position statement on access to care in rare liver diseases: advancements of the European reference network (ERN) RARE-LIVER

Bernts

Jones

Kaatee³

et al. 2019

Orphanet J Rare Dis

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The European Reference Network for rare liver diseases (ERN RARE-LIVER) is a Europe-wide network of paediatric and adult hepatologists from expert centres in close collaboration with patient advocates from the various disease-areas covered in our ERN. The ERN is focused on providing more equitable care across Europe and creates a network of both medical specialists and patient experts in rare liver disease. This position paper summarizes the achievements of the first year and plots the route for the near future for ERN RARE-LIVER, as discussed during a strategy meeting that took place 27 and 28 February 2018 in Nijmegen, the Netherlands. ERN RARE-LIVER has established itself as a group with experts, hospitals and patients. One of the tools to improve communication is the clinical patient management system (CPMS) that allows access to expert consultation by European physicians confronted with a patient with rare liver disease. ERN RARE-LIVER will function as the platform to improve healthcare by initiating registries, foster research efforts and coordinate development of clinical guidelines in Europe. Electronic supplementary material The online version of this article (10.1186/s13023-019-1152-z) contains supplementary material, which is available to authorized users.

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Long‐term health and treatment outcomes in adult coeliac disease patients diagnosed by screening in childhood

Abstract: Comparable long-term outcomes between screen-detected and clinically-detected patients support risk-group screening for coeliac disease. However, asymptomatic patients may require special attention.

Cited by 27 publications

References 35 publications

Extraintestinal Manifestations of Celiac Disease: Early Detection for Better Long-Term Outcomes

Extraintestinal Manifestations of Celiac Disease: Early Detection for Better Long-Term Outcomes

Gluten-Free Diet in Celiac Disease—Forever and for All?

Position statement on access to care in rare liver diseases: advancements of the European reference network (ERN) RARE-LIVER

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