The only accepted treatment of coeliac disease is a strict lifelong gluten-free diet.
Dietary advice
The diet should not be started until definitive diagnosis has been made by small intestinal histology.
After diagnosis, the patient should be referred to a dietitian with specific training in coeliac disease and the gluten-free diet. Dietary counselling is important, beyond the gluten-free diet education, because a gluten-free diet has been associated with lower intake of fibre, as well as vitamin and micronutrient deficiencies, and a higher intake of calories, simple carbohydrates, and saturated fats.[94]Bledsoe AC, King KS, Larson JJ, et al. Micronutrient deficiencies are common in contemporary celiac disease despite lack of overt malabsorption symptoms. Mayo Clin Proc. 2019 Jul;94(7):1253-60.
http://www.ncbi.nlm.nih.gov/pubmed/31248695?tool=bestpractice.com
[131]Vici G, Belli L, Biondi M, et al. Gluten free diet and nutrient deficiencies: a review. Clin Nutr. 2016 Dec;35(6):1236-41.
http://www.ncbi.nlm.nih.gov/pubmed/27211234?tool=bestpractice.com
Patients with coeliac disease are at risk of becoming overweight/obese.[132]Bascuñán KA, Vespa MC, Araya M. Celiac disease: understanding the gluten-free diet. Eur J Nutr. 2017 Mar;56(2):449-59.
http://www.ncbi.nlm.nih.gov/pubmed/27334430?tool=bestpractice.com
Although a small percentage of people may react to avenin or cross-contamination with other gluten-containing cereals, gluten-free oats are recommended in the diet for their nutrition benefits (soluble fibre, polyunsaturated oil, vitamin B complex, and iron).[73]Chaudrey KH. ACG guideline: diagnosis and management of celiac disease. Am J Gastroenterol. 2023;118(1):23.
http://www.ncbi.nlm.nih.gov/pubmed/36602833?tool=bestpractice.com
Quality of life for patients with coeliac disease has been shown to improve, but not normalise, with adherence to a gluten-free diet.[133]Burger JPW, de Brouwer B, IntHout J, et al. Systematic review with meta-analysis: dietary adherence influences normalization of health-related quality of life in coeliac disease. Clin Nutr. 2017 Apr;36(2):399-406.
http://www.ncbi.nlm.nih.gov/pubmed/27179800?tool=bestpractice.com
Gluten-free diet adherence is difficult, with dietary lapses in the majority of patients.[134]Hall NJ, Rubin G, Charnock A. Systematic review: adherence to a gluten-free diet in adult patients with coeliac disease. Aliment Pharmacol Ther. 2009 Aug 15;30(4):315-30.
https://onlinelibrary.wiley.com/doi/full/10.1111/j.1365-2036.2009.04053.x
http://www.ncbi.nlm.nih.gov/pubmed/19485977?tool=bestpractice.com
The importance of the diet should be stressed, and social support evaluated and encouraged within the family and by membership in coeliac disease advocacy groups.
Supplementation
Patients should be checked for common deficiencies including iron, vitamin D, vitamin B12, and folate. Deficiencies of these vitamins and minerals are more common in people with coeliac disease, compared with the general population.[135]Wierdsma NJ, van Bokhorst-de van der Schueren MA, Berkenpas M, et al. Vitamin and mineral deficiencies are highly prevalent in newly diagnosed celiac disease patients. Nutrients. 2013 Sep 30;5(10):3975-92.
https://www.ncbi.nlm.nih.gov/pmc/articles/pmid/24084055
http://www.ncbi.nlm.nih.gov/pubmed/24084055?tool=bestpractice.com
All patients with coeliac disease should be recommended to take calcium and vitamin D supplements. Iron should only be given to individuals with iron deficiency. Vitamin B12 (cyanocobalamin) and folate deficiencies should be corrected, especially since the gluten-free diet may be low in folate.
See:
Bone mineral density evaluation is indicated in patients with coeliac disease to assess for osteopenia or osteoporosis, but evidence regarding the optimal timing isare scant. In individuals with other risk factors for osteoporosis, aged >50 years, with severe villous atrophy, a bone mineral density analysis at the time of diagnosis is indicated. Some guidelines recommend evaluation of bone density either at diagnosis or after 1 year on a gluten-free diet, as studies show that the bone density may improve on a gluten-free diet.[73]Chaudrey KH. ACG guideline: diagnosis and management of celiac disease. Am J Gastroenterol. 2023;118(1):23.
http://www.ncbi.nlm.nih.gov/pubmed/36602833?tool=bestpractice.com
[136]Pantaleoni S, Luchino M, Adriani A, et al. Bone mineral density at diagnosis of celiac disease and after 1 year of gluten-free diet. Scientific World Journal. 2014;2014:173082.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4213989
http://www.ncbi.nlm.nih.gov/pubmed/25379519?tool=bestpractice.com
Others recommend evaluation no later than age 30-35 years, considering evidence showing a high rate of osteopenia in this population of patients with coeliac disease.[34]Al-Toma A, Volta U, Auricchio R, et al. European Society for the Study of Coeliac Disease (ESsCD) guideline for coeliac disease and other gluten-related disorders. United European Gastroenterol J. 2019 Jun;7(5):583-613.
https://journals.sagepub.com/doi/10.1177/2050640619844125?url_ver=Z39.88-2003&rfr_id=ori%3Arid%3Acrossref.org&rfr_dat=cr_pub++0pubmed
http://www.ncbi.nlm.nih.gov/pubmed/31210940?tool=bestpractice.com
[137]Mosca C, Thorsteinsdottir F, Abrahamsen B, et al. Newly diagnosed celiac disease and bone health in young adults: a systematic literature review. Calcif Tissue Int. 2022 Jun;110(6):641-8.
https://www.doi.org/10.1007/s00223-021-00938-w
http://www.ncbi.nlm.nih.gov/pubmed/34978602?tool=bestpractice.com
Failure to respond to treatment
For individuals who do not respond to a gluten-free diet, the most common problem is continued gluten exposure. There is evidence that, on a supposedly adequate gluten-free diet, patients consume enough gluten to trigger symptoms.[138]Syage JA, Kelly CP, Dickason MA, et al. Determination of gluten consumption in celiac disease patients on a gluten-free diet. Am J Clin Nutr. 2018 Feb 1;107(2):201-7.
https://academic.oup.com/ajcn/article/107/2/201/4911450
http://www.ncbi.nlm.nih.gov/pubmed/29529159?tool=bestpractice.com
[139]Comino I, Fernández-Bañares F, Esteve M, et al. Fecal gluten peptides reveal limitations of serological tests and food questionnaires for monitoring gluten-free diet in celiac disease patients. Am J Gastroenterol. 2016 Oct;111(10):1456-65.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5059698
http://www.ncbi.nlm.nih.gov/pubmed/27644734?tool=bestpractice.com
The initial step in the evaluation should be repeating immunoglobulin A-tissue transglutaminase (IgA-tTG) titre and referral to a dietitian with expertise in coeliac disease. If there is no evidence of continuing gluten intake, referral to a gastroenterologist with experience in the evaluation of non-responsive coeliac disease is recommended. While gluten exposure is the most common cause of non-responsive coeliac disease, many other conditions can explain symptoms, such as irritable bowel syndrome, other food intolerances, microscopic colitis, or small intestinal bacterial overgrowth.[140]Leffler DA, Kelly CP, Green PH, et al. Larazotide acetate for persistent symptoms of celiac disease despite a gluten-free diet: a randomized controlled trial. Gastroenterology. 2015 Jun;148(7):1311-9;e6.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4446229
http://www.ncbi.nlm.nih.gov/pubmed/25683116?tool=bestpractice.com
[141]Losurdo G, Marra A, Shahini E, et al. Small intestinal bacterial overgrowth and celiac disease: a systematic review with pooled-data analysis. Neurogastroenterol Motil. 2017 Jun;29(6):13028.
http://www.ncbi.nlm.nih.gov/pubmed/28191721?tool=bestpractice.com
Although positive IgA-tTG is indicative of intestinal injury and gluten exposure, a negative value cannot exclude continued intestinal injury.[142]Silvester JA, Kurada S, Szwajcer A, et al. Tests for serum transglutaminase and endomysial antibodies do not detect most patients with celiac disease and persistent villous atrophy on gluten-free diets: a meta-analysis. Gastroenterology. 2017 Sep;153(3):689-701;e1.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5738024
http://www.ncbi.nlm.nih.gov/pubmed/28545781?tool=bestpractice.com
[143]Husby S, Bai JC. Follow-up of celiac disease. Gastroenterol Clin North Am. 2019 Mar;48(1):127-36.
http://www.ncbi.nlm.nih.gov/pubmed/30711205?tool=bestpractice.com
If symptoms persist or relapse without an alternative explanation, repeat oesophagogastroduodenoscopy and duodenal biopsies should be performed, regardless of serological titres.[143]Husby S, Bai JC. Follow-up of celiac disease. Gastroenterol Clin North Am. 2019 Mar;48(1):127-36.
http://www.ncbi.nlm.nih.gov/pubmed/30711205?tool=bestpractice.com
Refractory coeliac disease
Refractory coeliac disease is defined as the persistence of malabsorption symptoms and villous atrophy despite strict gluten withdrawal for 12 months and no evidence of another abnormality, including overt lymphoma. A subgroup of patients with refractory coeliac disease develop complications of ulcerative jejunitis or enteropathy-associated T-cell lymphoma.[144]Rubio-Tapia A, Murray JA. Classification and management of refractory coeliac disease. Gut. 2010 Apr;59(4):547-57.
https://www.ncbi.nlm.nih.gov/pmc/articles/pmid/20332526
http://www.ncbi.nlm.nih.gov/pubmed/20332526?tool=bestpractice.com
The outlook for patients is generally poor. They should be cared for at a centre experienced in coeliac disease.
Coeliac crisis
Coeliac crisis is rare and presents with hypovolaemia, severe watery diarrhoea, acidosis, hypocalcaemia, and hypoalbuminaemia. Patients may have a precipitating major medical event, for example, recent abdominal surgery.[145]Jamma S, Rubio-Tapia A, Kelly CP, et al. Celiac crisis is a rare but serious complication of celiac disease in adults. Clin Gastroenterol Hepatol. 2010 Jul;8(7):587-90.
https://www.ncbi.nlm.nih.gov/pmc/articles/pmid/20417725
http://www.ncbi.nlm.nih.gov/pubmed/20417725?tool=bestpractice.com
Cases have been reported in adults and children.[145]Jamma S, Rubio-Tapia A, Kelly CP, et al. Celiac crisis is a rare but serious complication of celiac disease in adults. Clin Gastroenterol Hepatol. 2010 Jul;8(7):587-90.
https://www.ncbi.nlm.nih.gov/pmc/articles/pmid/20417725
http://www.ncbi.nlm.nih.gov/pubmed/20417725?tool=bestpractice.com
[146]Mones RL, Atienza KV, Youssef NN, et al. Celiac crisis in the modern era. J Pediatr Gastroenterol Nutr. 2007 Oct;45(4):480-3.
http://www.ncbi.nlm.nih.gov/pubmed/18030217?tool=bestpractice.com
In addition to parenteral fluid replacement, nutritional support, and correction of electrolyte abnormalities, most patients may benefit from a short course of systemic glucocorticoid therapy until the gluten-free diet takes effect.[145]Jamma S, Rubio-Tapia A, Kelly CP, et al. Celiac crisis is a rare but serious complication of celiac disease in adults. Clin Gastroenterol Hepatol. 2010 Jul;8(7):587-90.
https://www.ncbi.nlm.nih.gov/pmc/articles/pmid/20417725
http://www.ncbi.nlm.nih.gov/pubmed/20417725?tool=bestpractice.com
[147]Lloyd-Still JD, Grand RJ, Khaw KT, et al. The use of corticosteroids in celiac crisis. J Pediatr. 1972 Dec;81(6):1074-81.
http://www.ncbi.nlm.nih.gov/pubmed/4566038?tool=bestpractice.com
If patients are able to take oral medications, budesonide may be used initially. If this is not effective, prednisolone or an equivalent systemic corticosteroid can be started and should be tapered slowly after the patient is able to maintain hydration and nutritional status without intravenous supplementation.