Background: Celiac disease (CD) is a lifelong disorder. Patients are at increased risk of complications and comorbidity.
Objectives: We conducted a review of the literature on patient support and information in CD and aim to issue recommendations about patient information with regards to CD.
Data source: We searched PubMed for English-language articles published between 1900 and June 2014, containing terms related to costs, economics of CD, or education and CD.
Study selection: Papers deemed relevant by any of the participating authors were included in the study.
Data synthesis: No quantitative synthesis of data was performed. Instead we formulated a consensus view of the information that should be offered to all patients with CD.
Results: There are few randomized clinical trials examining the effect of patient support in CD. Patients and their families receive information from many sources. It is important that health care personnel guide the patient through the plethora of facts and comments on the Internet. An understanding of CD is likely to improve dietary adherence. Patients should be educated about current knowledge about risk factors for CD, as well as the increased risk of complications. Patients should also be advised to avoid other health hazards, such as smoking. Many patients are eager to learn about future non-dietary treatments of CD. This review also comments on novel therapies but it is important to stress that no such treatment is available at present.
Conclusion: Based on mostly observational data, we suggest that patient support and information should be an integral part of the management of CD, and is likely to affect the outcome of CD.
Keywords: Celiac (American spelling); coeliac (British spelling); gluten-free diet; support.
Screening for celiac disease in the general population and in high-risk groups.United European Gastroenterol J. 2015 Apr;3(2):106-20. doi: 10.1177/2050640614561668. United European Gastroenterol J. 2015. PMID: 25922671 Free PMC article. Review.
How has the impact of 'care pathway technologies' on service integration in stroke care been measured and what is the strength of the evidence to support their effectiveness in this respect?Int J Evid Based Healthc. 2008 Mar;6(1):78-110. doi: 10.1111/j.1744-1609.2007.00098.x. Int J Evid Based Healthc. 2008. PMID: 21631815
The gluten-free diet and its current application in coeliac disease and dermatitis herpetiformis.United European Gastroenterol J. 2015 Apr;3(2):121-35. doi: 10.1177/2050640614559263. United European Gastroenterol J. 2015. PMID: 25922672 Free PMC article. Review.
Living gluten-free: adherence, knowledge, lifestyle adaptations and feelings towards a gluten-free diet.J Hum Nutr Diet. 2016 Jun;29(3):374-82. doi: 10.1111/jhn.12316. Epub 2015 Apr 20. J Hum Nutr Diet. 2016. PMID: 25891988
Adolescents with celiac disease: a literature review of the impact developmental tasks have on adherence with a gluten-free diet.Gastroenterol Nurs. 2012 Jul-Aug;35(4):248-54. doi: 10.1097/SGA.0b013e31825f990c. Gastroenterol Nurs. 2012. PMID: 22847283 Review.
Cited by 7 articles
The WASh Trial: water-assisted sigmoidoscopy in the English Bowel Scope Screening Programme: study protocol for a randomized multicenter trial.Endosc Int Open. 2019 Nov;7(11):E1574-E1582. doi: 10.1055/a-0953-1468. Epub 2019 Nov 11. Endosc Int Open. 2019. PMID: 31723580 Free PMC article.
Measuring Quality of Life in Parents or Caregivers of Children and Adolescents with Celiac Disease: Development and Content Validation of the Questionnaire.Nutrients. 2019 Sep 27;11(10):2302. doi: 10.3390/nu11102302. Nutrients. 2019. PMID: 31569610 Free PMC article.
All that a physician should know about gluten-free diet.Indian J Gastroenterol. 2018 Sep;37(5):392-401. doi: 10.1007/s12664-018-0895-0. Epub 2018 Oct 26. Indian J Gastroenterol. 2018. PMID: 30367395 Review.
The Perceived Social Burden in Celiac Disease.Diseases. 2015 Jun 19;3(2):102-110. doi: 10.3390/diseases3020102. Diseases. 2015. PMID: 28943612 Free PMC article.
Gluten ataxia is better classified as non-celiac gluten sensitivity than as celiac disease: a comparative clinical study.Immunol Res. 2016 Apr;64(2):558-64. doi: 10.1007/s12026-015-8750-1. Immunol Res. 2016. PMID: 26676361