Interventions to Increase Adherence to a Gluten Free Diet in Patients with Coeliac Disease: A Scoping Review

Coeliac disease is a chronic inflammatory disorder of the small bowel, characterised by permanent intolerance to gluten. The only current and effective treatment for coeliac disease is a gluten free diet [GFD], however this is challenging for patients to adhere to. The review aims to identify published interventions designed to improve patients’ adherence to a GFD. Ten intervention studies were identified and included within the review; whilst heterogeneous in delivery, all included an educational, behavioural, and practical element. Five interventions significantly improved dietary adherence, these included follow-up appointments, a telephone clinic, an online course, cooking sessions and psychological support. All studies were small and used varied methods to assess adherence. There is a paucity of well-designed interventions to promote dietary adherence, in future more robust methods for ascertaining adherence is needed, we recommend greater inclusion of dietetic assessment and combining more than one method for assessing adherence.

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Epilepsy, cerebral calcifications and clinical or subclinical coeliac disease. Course and follow up with gluten-free diet

Seizure ◽

10.1016/s1059-1311(98)90008-5 ◽

1998 ◽

Vol 7 (1) ◽

pp. 49-54 ◽

Cited By ~ 23

Author(s):

Miguel A. Hernandez ◽

Gema Colina ◽

Luis Ortigosa

Keyword(s):

Coeliac Disease ◽

Gluten Free Diet ◽

Disease Course ◽

Gluten Free ◽

Cerebral Calcifications

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Symposium 1: Joint BAPEN and British Society of Gastroenterology Symposium on ‘Coeliac disease: basics and controversies’ Dietitians are better than clinicians in following up coeliac disease

Proceedings of The Nutrition Society ◽

10.1017/s0029665109001347 ◽

2009 ◽

Vol 68 (3) ◽

pp. 249-251 ◽

Cited By ~ 5

Author(s):

Claire Stuckey ◽

Jacqui Lowdon ◽

Peter Howdle

Keyword(s):

Coeliac Disease ◽

Healthcare Professionals ◽

Good Evidence ◽

Gluten Free Diet ◽

British Society ◽

Annual Review ◽

Team Approach ◽

Gluten Free ◽

Better Than

It seems obvious to healthcare professionals that patients with coeliac disease should receive regular follow-up. Surprisingly, there is little evidence that patients benefit in terms of reduced morbidity or mortality. However, several authoritative bodies have published guidelines on the management of coeliac disease that recommend regular follow-up. There is good evidence that compliance with a gluten-free diet reduces the risk of complications such as osteoporosis or small bowel lymphoma. Compliance is enhanced particularly by education about the disease and the gluten-free diet and by support from peers or professionals. Such input can be provided by regular follow-up, which thereby should improve compliance and hence long-term health. The consensus of the recommendations for follow-up suggests an annual review by a physician and dietitian. At annual follow-up the disease status can be checked and nutritional advice can be given, including checking the adequacy of, and the compliance with, the gluten-free diet. Complications and associated medical conditions can be sought, genetic risks explained and support and reassurance given. Specialist dietitians have particular expertise in relation to diet and nutritional management; specialist clinicians have a broader range of expertise in many aspects of management of the disease. A team approach for providing follow-up is the ideal, with a clinician and dietitian, both with expertise in coeliac disease, being involved. No one particular group of healthcare professionals is necessarily better than the other at providing follow-up.

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Reliability of coeliac serology in monitoring dietary adherence in children with coeliac disease on a gluten-free diet

Tropical Doctor ◽

10.1177/0049475519835732 ◽

2019 ◽

Vol 49 (3) ◽

pp. 192-196

Author(s):

Reena Jain ◽

Praveen Kumar ◽

Seema Kapoor ◽

Srikanta Basu ◽

Avinash Lomash ◽

...

Keyword(s):

Coeliac Disease ◽

Gluten Free Diet ◽

Dietary Adherence ◽

Gluten Free ◽

Newly Diagnosed ◽

Serial Measurement

This study aimed to determine the utility of coeliac serology for monitoring dietary adherence in coeliac disease. Serum anti-tTg IgA and anti-DGP IgG levels of 42 newly diagnosed patients were measured at diagnosis and at intervals of three, six and 12 months after starting a gluten-free diet. Both anti-tTg and anti-DGP antibodies decreased in all patients. The decline in the former was significantly greater at 3–12 months throughout, while in the latter the decline was seen only at three months but not subsequently. Serial measurement of coeliac serology may help in monitoring adherence to a gluten-free diet.

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Histological recovery and gluten-free diet adherence: a prospective 1-year follow-up study of adult patients with coeliac disease

Alimentary Pharmacology & Therapeutics ◽

10.1111/apt.12893 ◽

2014 ◽

Vol 40 (6) ◽

pp. 639-647 ◽

Cited By ~ 33

Author(s):

G. Galli ◽

G. Esposito ◽

E. Lahner ◽

E. Pilozzi ◽

V. D. Corleto ◽

...

Keyword(s):

Coeliac Disease ◽

Adult Patients ◽

Gluten Free Diet ◽

Gluten Free ◽

Diet Adherence ◽

Follow Up Study

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Gluten-free diet may alleviate depressive and behavioural symptoms in adolescents with coeliac disease: a prospective follow-up case-series study

BMC Psychiatry ◽

10.1186/1471-244x-5-14 ◽

2005 ◽

Vol 5 (1) ◽

Cited By ~ 48

Author(s):

Päivi A Pynnönen ◽

Erkki T Isometsä ◽

Matti A Verkasalo ◽

Seppo A Kähkönen ◽

Ilkka Sipilä ◽

...

Keyword(s):

Coeliac Disease ◽

Case Series ◽

Gluten Free Diet ◽

Gluten Free ◽

Behavioural Symptoms ◽

Case Series Study ◽

Series Study

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Assessment of the response to gluten-free diet in an Iraqi population with coeliac disease. A histological and serological follow-up study

Archives of Medical Science ◽

10.5114/aoms.2012.31297 ◽

2014 ◽

Vol 2 ◽

pp. 294-299 ◽

Cited By ~ 3

Author(s):

Muhamed Osman ◽

Balsam Taha ◽

Ghada Al Duboni

Keyword(s):

Coeliac Disease ◽

Gluten Free Diet ◽

Gluten Free ◽

Follow Up Study

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Identifying and improving adherence to the gluten-free diet in people with coeliac disease

Proceedings of The Nutrition Society ◽

10.1017/s002966511800277x ◽

2019 ◽

Vol 78 (3) ◽

pp. 418-425 ◽

Cited By ~ 3

Author(s):

H. Muhammad ◽

S. Reeves ◽

Y. M. Jeanes

Keyword(s):

Coeliac Disease ◽

Gastrointestinal Disorder ◽

Text Messages ◽

Gluten Free Diet ◽

Depression Symptoms ◽

Dietary Adherence ◽

Gluten Free ◽

Increased Risk ◽

Training Programmes ◽

The Cost

Coeliac disease (CD) is an autoimmune gastrointestinal disorder whereby the ingestion of gluten, a storage protein found in wheat, barley and rye, causes damage to intestinal mucosa with resultant malabsorption, increased risk of anaemia and osteoporosis. Worldwide estimates suggest 1% of the population have CD. With no cure, the only treatment is a gluten-free diet (GFD). Adhering to a GFD can be very challenging; it requires knowledge, motivation and modified behaviours. Assessing adherence to a GFD is methodologically challenging. This review aims to provide an overview of the literature reporting adherence to a GFD in people with CD and the methodological challenges encountered. From six studies it has been reported that rates of adherence to a GFD range between 45 and 90% in patients of different ethnicities with CD. GF dietary adherence can be influenced by age at diagnosis, coexisting depression, symptoms on ingestion of gluten, nutrition counselling, knowledge of GF foods, understanding of food labels, cost and availability of GF foods, receiving GF foods on prescription and membership of a coeliac society. To date only five intervention studies in adults with CD have been undertaken to improve GF dietary adherence. These have included dietary and psychological counselling, and the use of online training programmes, apps, text messages and telephonic clinics. Future interventions should include people of all ethnicities, consider patient convenience and the cost-effectiveness for the healthcare environment.

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A fatal outcome in a patient with coeliac disease who suspended a strict gluten-free diet: a case report

Journal of International Medical Research ◽

10.1177/03000605211061042 ◽

2021 ◽

Vol 49 (12) ◽

pp. 030006052110610

Author(s):

Chong Lu ◽

Xiao-Juan Zheng ◽

Hong-Jun Hua ◽

Qun-Ying Wang

Keyword(s):

Case Report ◽

Coeliac Disease ◽

Fatal Outcome ◽

Primary Treatment ◽

Gluten Free Diet ◽

Gluten Free ◽

Immunological Reaction ◽

Small Bowel Disease ◽

Haemophagocytic Lymphohistiocytosis

Coeliac disease (CD) is an autoimmune small bowel disease that occurs in susceptible individuals that develop an immunological reaction to gluten. A strict gluten-free diet (GFD) is the primary treatment for CD. This case report describes a patient with CD recurrence due to a discontinuation of a strict GFD by the patient. After recurrence, the patient developed fever and pancytopaenia, and quickly died of haemophagocytic lymphohistiocytosis (HLH). To the best of our knowledge, this is the first description of a case of CD associated with HLH due to discontinued GFD, which may contribute to improving the awareness of the importance of maintaining a strict GFD and having regular follow-up examinations.

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Comparing alternative follow-up strategies for patients with stable coeliac disease

Frontline Gastroenterology ◽

10.1136/flgastro-2018-101156 ◽

2019 ◽

Vol 11 (2) ◽

pp. 93-97 ◽

Cited By ~ 2

Author(s):

Lucy Pritchard ◽

Carolyn Waters ◽

Iain Alexander Murray ◽

James Bebb ◽

Stephen Lewis

Keyword(s):

Coeliac Disease ◽

Daily Intake ◽

Postal Questionnaire ◽

Late Complications ◽

Gluten Free Diet ◽

Annual Review ◽

Gluten Free ◽

Almost All ◽

To Receive

BackgroundOnce clinically stable, patients with coeliac disease should have annual follow-up. Lack of capacity in gastroenterology outpatient clinics mean alternatives are required.ObjectivesWe studied the effectiveness of follow-up deferred to general practitioners (GP-FU) and compared this with a neighbouring Trust where follow-up was through a dedicated nurse-led telephone clinic (T-FU).DesignAll patients with coeliac disease were posted a questionnaire examining patient satisfaction, adherence with gluten-free diet and calcium intake.Results517 of 825 patients (62.7%) completed a postal questionnaire (median age 61, 72% female). 28% of GP-FU and 84% of T-FU patients received an annual review. Of those seen, 33% (GP-FU) and 53% (T-FU) were weighed (χ2 65.8, p<0.001), 44% and 63% had symptom review (χ2 81.1, p<0.001) and 33% and 51% had dietary adherence checked (χ2 60.6, p<0.001). Almost all patients considered their adherence with gluten-free diet (GFD) good or excellent, although the majority of patients failed to achieve the recommended daily intake of calcium. GP-FU patients were more likely to receive calcium±vitamin D supplements (77% vs 42%, χ2 88.2, p<0.001) and they were also more likely to receive appropriate vaccinations (67% vs 38%, χ2 17.6, p<0.001).ConclusionsDischarge of patients with coeliac disease to primary-care in many cases results in their complete loss to follow-up. When patients were reviewed, either by GP-FU and T-FU, many aspects of their care are not addressed. Whether this will result in late complications remains to be seen.

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