Navigating celiac disease and the gluten-free diet in China

2021 ◽  
pp. 026010602199025
Author(s):  
Qianhui Zhang ◽  
Randi L Wolf ◽  
Anne R Lee ◽  
Carlo Catassi ◽  
Patricia Zybert ◽  
...  

Background: Little is known about celiac disease (CeD) diagnosis and management in China. Aim: This pilot aimed to be the first study to describe, quantitatively and qualitatively, how individuals living in China navigate CeD and the gluten-free diet (GFD). Methods: Participants were 13 adults and four parents of children with reported CeD, recruited from 11 mainland China cities via an online GFD support group. CeD-specific quality of life (CD-QOL and CD-PQOL) and diet adherence (CDAT) were assessed. In-depth interviews addressed experiences with CeD and the GFD. Results: Six of 17 participants reported biopsy- or serology-confirmed CeD. The mean (SD) adult CDAT score was 15.2 (3.6), > 13 indicating inadequate GFD adherence. The mean adult CD-QOL score was 62.1 (24.1) out of 100, in the “medium” to “good” range. Results were similar in children. Major interview themes included: (1) a challenging journey to obtain diagnosis; (2) social and structural barriers to maintaining the GFD; and (3) reliance on self in management of CeD. Conclusion: Obtaining a diagnosis, maintaining a GFD, and living with CeD can be extremely challenging in mainland China. Results suggest an urgent need for CeD-specific education and Asian-adapted GFD guidance for both healthcare practitioners and patients.

2020 ◽  
Vol 18 (11) ◽  
pp. 2625-2627
Author(s):  
Randi L. Wolf ◽  
Mary Morawetz ◽  
Anne R. Lee ◽  
Pamela A. Koch ◽  
Isobel R. Contento ◽  
...  

2019 ◽  
Vol 156 (6) ◽  
pp. S-117-S-118
Author(s):  
Randi L. Wolf ◽  
Mary Morawetz ◽  
Anne R. Lee ◽  
Pamela A. Koch ◽  
Isobel R. Contento ◽  
...  

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Emilia Majsiak ◽  
Magdalena Choina ◽  
Dominik Golicki ◽  
Alastair M. Gray ◽  
Bożena Cukrowska

Abstract Background Coeliac disease (CD) is characterised by diverse clinical symptoms, which may cause diagnostic problems and reduce the patients’ quality of life. A study conducted in the United Kingdom (UK) revealed that the mean time between the onset of coeliac symptoms and being diagnosed was above 13 years. This study aimed to analyse the diagnostic process of CD in Poland and evaluate the quality of life of patients before and after CD diagnosis. In addition, results were compared to the results of the original study conducted in the UK. Methods The study included 2500 members of the Polish Coeliac Society. The patients were asked to complete a questionnaire containing questions on socio-demographic factors, clinical aspects and quality of life, using the EQ-5D questionnaire. Questionnaires received from 796 respondents were included in the final analysis. Results The most common symptoms reported by respondents were bloating (75%), abdominal pain (72%), chronic fatigue (63%) and anaemia (58%). Anaemia was the most persistent symptom, with mean duration prior to CD diagnosis of 9.2 years, whereas diarrhoea was observed for the shortest period (4.7 years). The mean duration of any symptom before CD diagnosis was 7.3 years, compared to 13.2 years in the UK. CD diagnosis and the introduction of a gluten-free diet substantially improved the quality of life in each of the five EQ-5D-5L health dimensions: pain and discomfort, anxiety and depression, usual activities, self-care and mobility (p < 0.001), the EQ-Index by 0.149 (SD 0.23) and the EQ-VAS by 30.4 (SD 28.3) points. Conclusions Duration of symptoms prior to the diagnosis of CD in Poland, although shorter than in the UK, was long with an average of 7.3 years from first CD symptoms. Faster CD diagnosis after the onset of symptoms in Polish respondents may be related to a higher percentage of children in the Polish sample. Introduction of a gluten-free diet improves coeliac patients’ quality of life. These results suggest that doctors should be made more aware of CD and its symptoms across all age groups.


Nutrients ◽  
2020 ◽  
Vol 12 (12) ◽  
pp. 3802
Author(s):  
Deianira Pedoto ◽  
Riccardo Troncone ◽  
Margherita Massitti ◽  
Luigi Greco ◽  
Renata Auricchio

Assessment of adherence to gluten-free diet (GFD) represents the cornerstone in the management of coeliac disease. The primary aim of this study was to assess diet adherence through a questionnaire adapted to children. The secondary aim was to identify influencing factors and outcomes related to diet adherence. In this study, data about diagnosis, education, quality of life (QoL) and anti-transglutaminase (anti-TG2) titers of 160 coeliac children were collected. For the assessment of diet adherence, all participants completed the questionnaire modified from Leffler et al. (2009), while a random sample of 37 also underwent an extensive dietary interview. According to the questionnaire, diet adherence was excellent in 95 (59.4%), fair in 46 (28.8%) and low in 19 (11.9%) patients. Children diagnosed with biopsy showed better adherence than those with a biopsy-sparing approach (p = 0.036). Adherence to GFD tended to worsen during the follow up, with the average length of follow up being associated with lower scores of diet adherence (p = 0.009). Moreover, adherence to GFD decreased throughout school career, dropping from elementary until high school (p = 0.037). A positive correlation was observed between adherence to GFD and growth percentiles, which increased when higher scores of adherence were achieved. Diet adherence positively correlated with QoL (p = 0.001). In conclusion, the questionnaire displayed good sensitivity in detecting problems in diet adherence, being useful as a screening tool. Better comprehension of influencing factors and outcomes may allow the development of new strategies to improve diet adherence.


2007 ◽  
Vol 102 ◽  
pp. S200
Author(s):  
Daniel A. Leffler ◽  
Jessica B. Edwards-George ◽  
Melinda Dennis ◽  
Detlef Schuppan ◽  
Ciaran P. Kelly

2020 ◽  
Author(s):  
Zeinab Nikniaz ◽  
Reza Mahdavi ◽  
Leila Nikniaz ◽  
Masood Shirmohammadi ◽  
Mojgan Akhavan Sabbagh

Abstract Background: Considering the presence of different complications in celiac patients and also limitations of the gluten-free diet (GFD), we intended to assess the diet quality in patients with celiac disease. In this regard, in the present study, we assessed the dietary acid load in adult celiac patients and compare it with that of the healthy population to provide more specific dietary recommendations for celiac patients. Methods: This study was a cross-sectional study that includes 130 celiac patients and 462 Non-celiac population. The 80-item semi-quantitative food frequency questionnaire was used to obtain dietary data. Based on dietary data, the dietary acid load (DAL), Potential renal net acid load (PRAL), and net endogenous acid production (NEAP) were calculated. Results: The mean PRAL value is negative in the celiac group and it was positive in the general population. There was a significant difference in the PRAL score between celiac patients and the general population (p<0.001). The mean NEAP and DAL score were significantly lower in the celiac group compared with the healthy population (P<0.001). There were no significant differences between gluten-free diet adherents and non-adherents regarding the PRAL, NEAP, and DAL values (P>0.05). Conclusion: We showed that the patients with celiac disease had significantly less acidogenic diet compared with that of the general population. Considering the health benefits of a less acidogenic diet, following a gluten-free diet, could have added value to celiac patients and besides the elimination of symptoms, it could also prevent other complications in these patients.


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