Changes

June 2025 — reviewed. A literature search was conducted in March 2025 to identify evidence-based guidelines, UK policy, systematic reviews, and key randomized controlled trials published since the last revision of the topic. No major changes to the recommendations have been made.

Update

Goals

To support primary healthcare professionals to:

• Be aware when to suspect and how to diagnose coeliac disease.
• Arrange referral to a gastroenterologist to confirm the diagnosis.
• Advise on the importance of a gluten-free diet, to provide symptom relief, and reduce the risk of complications.
• Arrange regular review in primary care, assess for complications, and arrange referral to an appropriate specialist if needed.

Outcome measures

Audit criteria

QOF indicators

QIPP - Options for local implementation

No QIPP indicators were found during the review of this topic.

NICE quality standards

Coeliac disease

• People at increased risk or with symptoms of coeliac disease are offered a serological test for coeliac disease.
• People with a positive serological test for coeliac disease are referred to a specialist and advised to continue with a gluten-containing diet until diagnosis is confirmed.
• People referred to a specialist who need an endoscopic intestinal biopsy to diagnose coeliac disease have it within 6 weeks of referral.
• People newly diagnosed with coeliac disease discuss how to follow a gluten-free diet with a healthcare professional with specialist knowledge of coeliac disease.
• People with coeliac disease are offered an annual review.

[NICE, 2022]

What is it?

• Coeliac disease is a chronic immune-mediated systemic disorder which occurs in genetically predisposed people and is triggered by exposure to dietary gluten (the major complex protein component of wheat, barley, and rye).
  • It is characterized by small bowel enteropathy (villous atrophy, intra-epithelial lymphocytosis, and crypt hyperplasia) with variable degrees of severity, a wide range of gastrointestinal and/or systemic symptoms, and the presence of coeliac-specific autoantibodies.
  • Coeliac disease is a chronic inflammatory state which improves with the removal of dietary gluten in the majority of cases.
• 'Potential coeliac disease' refers to people who may be symptomatic or asymptomatic with antibody positivity for coeliac disease, but no villous atrophy on duodenal biopsy.
• 'Non-responsive coeliac disease' refers to people with persistent symptoms and/or enteropathy that do not respond after 6–12 months on a self-reported gluten-free diet, and is most commonly due to inadvertent gluten ingestion.
• 'Refractory coeliac disease' refers to people with persistence or recurrence of otherwise unexplained symptoms and/or mucosal damage on duodenal biopsy, despite strict adherence to a gluten-free diet for at least 12 months. Refractory coeliac disease can be classified as:
  • Type 1 refractory coeliac disease, where intraepithelial lymphocyte phenotype is normal. Inadvertent gluten ingestion is often the cause.
  • Type 2 refractory coeliac disease where intraepithelial lymphocyte phenotype is abnormal. This is a pre-lymphoma state and is associated with a poor prognosis.

[Al-Toma, 2019; Caio, 2019; Cichewicz, 2019; McAllister, 2019; Lebwohl, 2021; Catassi, 2022; Elwenspoek , 2022; Tye-Din, 2022; Elli, 2024]

How common is it?

• Coeliac disease is a common and often under-diagnosed cause of chronic malabsorption — prevalence data varies according to the population studied and case definition used.
• The global prevalence of coeliac disease is around 1% (range 0.5–2%).
  • A meta-analysis (96 studies) found a pooled global prevalence of 1.4% (n = 275,818) based on serology testing and 0.7% (n = 138,792) based on biopsy testing [Singh, 2018].
  • Coeliac disease is less common in countries where the distribution of HLA genotypes predisposing to coeliac disease is low and gluten-containing foods do not form a large part of the staple diet (for example, Japan and Vietnam).
  • The prevalence of coeliac disease has increased over the past 50 years. This increase in prevalence has been attributed to increased awareness, improvements in diagnostic tools and screening, and rising rates of autoimmunity.
• In the UK, coeliac disease affects an estimated 1% of people — this is likely to be an underestimate as many people with coeliac disease are undiagnosed.
  • A UK population-based cohort study identified 50,416 cases of newly diagnosed coeliac disease between January 2000 and July 2020 [Nartey, 2023]:
    • Incidence was 17.5 per 100,000 person-years and was highest under the age of 4 years and over the age of 50 years. 
    • Incidence was found to be almost twice as high in females compared with males (incidence rate ratio 1.95; 95% CI 1.92-1.99).
    • Adjusted incidence doubled over the 20-year study period and varied by region and ethnicity. Prevalence in 2020 was 0.36%, almost double the prevalence in 2010. 
• Coeliac disease can occur at any age from early childhood to old age. Various studies have found a female preponderance in cases. 
  • A meta-analysis including 33 studies with separate pooled prevalence of biopsy-confirmed coeliac disease for males and females found that [Singh, 2018]:
    • Of 33,149 males and 27,371 females, 156 males (0.4%, 95% CI, 0.3%–0.5%) and 213 females (0.6%; 95% CI, 0.5%–0.8%) had biopsy-confirmed coeliac disease.
  • A meta-analysis of 50 studies found [King, 2020]:
    • A global pooled female incidence of 17.4 per 100,000 person-years, compared to 7.8 in males.
    • A global incidence in children of 21.3 per 100,000 person-years, compared with 12.9 in adults.
    • That incidence of coeliac disease has increased by 7.5% per year over the past several decades.
  • Expert opinion in a review article notes that coeliac disease has two peaks of onset; one shortly after weaning in the first 2 years of life, and the other in the second or third decades of life [Caio, 2019].
• Refractory coeliac disease
  • Epidemiological data on refractory coeliac disease is very limited —malabsorption and villous atrophy are estimated to persist in 0.3–0.4% of people with coeliac disease, despite a strict gluten free diet and exclusion of other causes of enteropathy [Kivelä , 2021]. 

 [Al-Toma, 2019; Caio, 2019; Lebwohl, 2021; Catassi, 2022; Elwenspoek , 2022; Tye-Din, 2022; Rubio-Tapia, 2023]

What are the causes?

Coeliac disease develops as a result of a complex immune response to the ingestion of gluten. The exact cause is not fully understood, but predisposing factors include:

• Genetic factors:
  • Coeliac disease is a highly heritable disorder — people in families who have more than one relative affected with coeliac disease are at higher risk of developing the disease.
  • The lifetime risk of developing coeliac disease is 10–15% in people with a family history. Concordance rate in monozygotic twins is high (50–80%) [Catassi, 2022; Iversen, 2023].
  • A US population-based cohort study of 111 index cases [Rubio-Tapia, 2008] found a prevalence rate of up to 20% in siblings and 10% in other first-degree relatives. The risk of developing coeliac disease was highest for first-degree relatives if they were HLA-matched and a sibling of the index case.
  • The presence of human leukocyte antigen (HLA) risk alleles is associated with coeliac disease susceptibility and is a necessary, but not sufficient, factor for the development of the disease.
  • Coeliac disease is strongly associated with the HLA-DQ2 and/or -DQ8 haplotypes — these are seen in over 90% of people with coeliac disease, compared with about 40–50% of the general population [McAllister, 2019; Elwenspoek , 2022; Iversen, 2023; Elli, 2024].
• Immunological factors
  • Development of coeliac enteropathy is driven by complex innate and adaptive immune responses to gluten proteins.
  • People with other autoimmune conditions, such as type 1 diabetes mellitus and autoimmune thyroid disease, have an increased risk of developing coeliac disease.
• Environmental factors
  • Gluten exposure is the major environmental factor that triggers coeliac disease in genetically predisposed people.
  • Breastfeeding, whether any amount, exclusive or of any duration, does not reduce the risk of developing coeliac disease.
  • Introduction of gluten into an infant’s diet at any time between 4 months (17 weeks or older) and 12 months of age does not affect the cumulative incidence of coeliac disease. However, earlier introduction may lead to earlier seroconversion and coeliac disease.
  • Other environmental factors such as gastrointestinal infections, gluten dose, and changes in the gut microbiome are suspected of having a role in the development of coeliac disease and are currently under investigation.

[Ludvigsson, 2014; Lebwohl, 2015; NICE, 2015; Hill, 2016; Ludvigsson, 2016; Al-Toma, 2019; Cichewicz, 2019; McAllister, 2019; Husby, 2020; Kivelä , 2021; Lebwohl, 2021; Catassi, 2022; Elwenspoek , 2022; Iversen, 2023; Elli, 2024; Szajewska, 2024]

What are the complications?

Possible complications of undiagnosed, untreated, or undertreated coeliac disease include:

• Reduced quality of life.
  • This may be due to social implications of adhering to a gluten-free diet, including social isolation, avoiding eating out because of the risk of contamination, embarrassment with friends and colleagues, fear of inadvertent exposure to gluten, and the increased costs associated with a gluten-free diet.
• Depression, anxiety, and possible eating disorders, especially in young people.
  • See the CKS topics on  Depression, Depression in children, Generalized anxiety disorder, and Eating disorders for more information.
• Faltering growth and delayed puberty in children.
  • See the CKS topic on Faltering growth for more information.
• Nutritional deficiencies due to malabsorption and gastrointestinal inflammation.
  • Anaemia due to malabsorption and deficiency of iron, folate, and/or vitamin B12.
  • Iron deficiency is present in 12–82% of people with coeliac disease at diagnosis. Coeliac disease is present in 2–5% of people with iron deficiency anaemia. See the CKS topic on Anaemia - iron deficiency for more information.
  • Vitamin B12 deficiency is present in 5–41% of untreated cases of coeliac disease. See the CKS topic on Anaemia - B12 and folate deficiency for more information.
• Reduced bone mineral density, including osteoporosis and osteopenia.
  • This is due to malabsorption of calcium and/or vitamin D, and increases the risk of fragility fractures. See the CKS topics on  Osteoporosis - prevention of fragility fractures, Vitamin D deficiency in adults - treatment and prevention, and Vitamin D deficiency in children.
• Functional hyposplenism or asplenia.
  • Hyposplenism is closely associated with the development of complications and other autoimmune diseases associated with coeliac disease, and is a risk factor for encapsulated bacterial infections (such as pneumococcus, Haemophilus influenzae, and meningococcus infections) and sepsis. See the CKS topic on Sepsis for more information.
• Malignancy, such as Hodgkin's and non-Hodgkin's lymphoma (including enteropathy-associated T-cell lymphoma [EATL] and less frequently B-cell non-Hodgkin's lymphoma), small bowel adenocarcinoma, and pancreatic cancer.
  • People with coeliac disease are at increased risk of cancer, including a two-fold to four-fold increased risk of non-Hodgkin’s lymphoma, and a more than 30-fold increased risk of small bowel adenocarcinoma.
• Neurological problems such as peripheral neuropathy and ataxia.
  • Less than 10% of people with gluten ataxia have intestinal symptoms.
• Dermatitis herpetiformis — an intensely itchy vesicular rash which usually develops on extensor surfaces and buttocks. 
  • Most people with dermatitis herpetiformis have circulating antibodies against IgA tissue transglutaminase and villous atrophy.
• Reproductive complications.
  • Active coeliac disease is associated with delayed puberty, amenorrhoea, sub-fertility, miscarriage, intra-uterine growth restriction and premature delivery. 
  • The prevalence of coeliac disease among people with unexplained infertility ranges from 4–10.3%.
• Refractory coeliac disease.
  • This is a rare condition, defined as persistent or recurrent symptoms and villous atrophy despite strict adherence to a gluten-free diet for at least 12 months, affecting about 1–1.5% of coeliac disease cases. Persistent symptoms typically include malabsorption, weight loss, and nutritional deficiencies. It is classified into two subtypes (Type 1 and Type 2) with differing prognosis.
  • Ulcerative jejunitis is a rare complication of refractory coeliac disease characterized by inflammatory ulceration of the small bowel.

[Ludvigsson, 2014; Mooney, 2014; Lebwohl, 2015; NICE, 2015; Ludvigsson, 2016; Simons, 2018; Thomas, 2018; Al-Toma, 2019; Caio, 2019; Husby, 2019; McAllister, 2019; Clappison, 2020; Husby, 2020; Kivelä , 2021]  [Lebwohl, 2021; Catassi, 2022; Elwenspoek , 2022; Laurikka, 2022; Tye-Din, 2022]

What is the prognosis?

The majority of people with confirmed coeliac disease report a rapid improvement in symptoms after starting a gluten-free diet.

• The resolution of symptoms of coeliac disease does not necessarily correlate with the degree of duodenal mucosal recovery.
  • A European Society for the Study of Coeliac Disease guideline [Al-Toma, 2019] cites studies showing that in people adhering to a strict gluten-free diet for more than 1 year, up to 75% had remission of symptoms and biopsies showed normal villous architecture, but 50–70% still had signs of mucosal damage (increased intraepithelial lymphocytes).
  • In people not adhering to a strict gluten-free diet, repeated ingestion of traces of gluten is often symptomless but can lead to mucosal damage. Incomplete adherence to a gluten-free diet is more common in males, adolescents, and people with asymptomatic coeliac disease.
  • Mucosal healing in children tends to occur more rapidly and completely than in adults.
• 'Slow responders' describes the 7–30% of adults with coeliac disease who continue to have persistent symptoms, signs, or laboratory abnormalities of coeliac disease despite a gluten-free diet for at least 6–12 months.
  • Symptoms and mucosal damage progressively improve, but full remission may not occur for at least 1–2 years.
• 'Non-responsive coeliac disease' refers to people with persistent symptoms and/or enteropathy that do not respond after 6–12 months on a self-reported gluten-free diet, and is most commonly due to inadvertent gluten ingestion. 
  • A small number of cases are the result of refractory coeliac disease or causes other than coeliac disease. 
  • The British Society of Gastroenterology guidelines [Ludvigsson, 2014] suggest that 4–30% of people with coeliac disease report persisting symptoms and are considered to be non-responsive.
• 'Refractory coeliac disease' refers to people with persistent or recurrent and otherwise unexplained malabsorption symptoms and/or villous atrophy on duodenal biopsy, despite strict adherence to a gluten-free diet for at least 12 months.
  • Refractory coeliac disease (RCD) is mostly diagnosed after the age of 50 years — incidence rates range from 0.04–1.5% [Al-Toma, 2019].
  • It can be classified as Type 1 (normal intraepithelial lymphocyte phenotype) or Type 2 (abnormal intraepithelial lymphocyte phenotype) – prognosis varies substantially depending on subtype.
  • The risk of complications and histological findings in Type 1 RCD are similar to untreated coeliac disease.
  • Type 2 RCD is associated with significantly reduced survival compared to Type 1.
    • A single-centre cohort study of people with refractory coeliac disease (n = 57) [Rubio-Tapia, 2009] found the overall cumulative 5-year survival to be 80% and 45% in people with Type 1 and Type 2 disease, respectively.
    • The rare enteropathy-associated T-cell lymphoma (EATL), is strongly associated with type II disease, and is linked to its poorer prognosis. 33–52% of people with Type 2 RCD develop EATL within 5 years of diagnosis. The estimated 2 year survival rate in people developing EATL is poor (15–20%) [NICE, 2015].
• People with coeliac disease display possible excess mortality compared with the general population — evidence in the literature is conflicting. 
  • A UK primary care cohort study of cause-specific mortality for people with coeliac disease (n = 10,825) found [Abdul Sultan, 2015]:
    • The overall mortality rate among people with coeliac disease was 128 per 10,000 person-years, compared with 153 per 10,000 in controls (hazard ratio 0.94).
    • People with coeliac disease had 0.15% excess risk of deaths from non-Hodgkin’s lymphoma from the general population baseline risk, up to 10 years post-diagnosis.
    • People with coeliac disease had no major excess risk of cancer, gastrointestinal or respiratory disease-related or cardiovascular-related mortality compared with the general population, up to 10 years post-diagnosis.
  • A Swedish population-based cohort study (n=49,829) found a small but statistically significant increased mortality rate [Lebwohl, 2020]:
    • The all-cause mortality rate was 9.7 per 1000 person years compared to 8.6 per 1000 person years in general population controls (hazard ratio 1.21 [95% CI, 1.17-1.25]).
    • People with coeliac disease were at increased risk of death from cardiovascular disease (3.5 vs 3.4 per 1000 person-years), cancer (2.7 vs 2.2 per 1000 person-years), and respiratory disease (0.6 vs 0.5 per 1000 person-years).

[Ludvigsson, 2014; NICE, 2015; Al-Toma, 2019; Caio, 2019; Cichewicz, 2019; McAllister, 2019; Catassi, 2022; Penny, 2022; Tye-Din, 2022; Rubio-Tapia, 2023]

When should I suspect a diagnosis of coeliac disease?

• Symptoms and signs of coeliac disease are often non-specific — it can present at any age with intestinal and/or extra-intestinal manifestations, or be asymptomatic.
  • Wide variability in presentation can lead to delayed or missed diagnosis.
• Suspect a diagnosis of coeliac disease in a person with:
  • Persistent, unexplained gastrointestinal symptoms, such as acid reflux, diarrhoea, steatorrhoea, weight loss, abdominal pain, reduced appetite, bloating, and constipation.
  • Irritable bowel syndrome (in adults). See the CKS topic on Irritable bowel syndrome for more information.
  • Faltering growth, idiopathic short stature, or delayed puberty in children. See the CKS topic on Faltering growth for more information.
  • Prolonged fatigue or lethargy. See the CKS topic on Tiredness/fatigue in adults for more information.
  • Persistent or recurrent mouth ulcers. See the CKS topic on Aphthous ulcer for more information.
  • Unexplained iron, vitamin B12, or folate deficiency that may cause anaemia; or anaemia not responding to treatment. See the CKS topics on Anaemia - iron deficiency and Anaemia - B12 and folate deficiency for more information.
  • Type 1 diabetes mellitus (at diagnosis). See the CKS topic on Diabetes - type 1 for more information.
  • Autoimmune thyroid disease (at diagnosis), such as Hashimoto's thyroiditis. See the CKS topic on Hypothyroidism for more information.
  • Autoimmune liver disease, such as primary biliary cholangitis, autoimmune hepatitis, and primary sclerosing cholangitis. See the CKS topic on Jaundice in adults for more information.
  • Selective IgA deficiency.
  • A first-degree relative with coeliac disease.
  • Suspected dermatitis herpetiformis.
    • This is an immune-mediated cutaneous manifestation of coeliac disease that is more common in adults and older teenagers.
    • It is characterized by a symmetrical, intensely itchy, polymorphic rash (small vesicles, papules and erythema) — erosions, excoriation, crusts, and post-inflammatory hyperpigmentation often occur. Areas most commonly involved include the elbows, knees, shoulders, buttocks, and sacral region.
• Consider a diagnosis of coeliac disease in a person with:
  • Unexplained depression or anxiety. See the CKS topics on Depression, Depression in children, and Generalized anxiety disorder for more information.
  • Osteomalacia, osteopenia, osteoporosis, or fragility fractures. See the CKS topics on Osteoporosis - prevention of fragility fractures, Vitamin D deficiency in adults - treatment and prevention, and Vitamin D deficiency in children for more information.
  • Unexplained neurological symptoms, in particular, peripheral neuropathy or ataxia.
  • Unexplained recurrent miscarriage, subfertility or amenorrhoea. See the CKS topics on Amenorrhoea, Miscarriage and Infertility for more information.
  • Unexplained persistently raised transaminases on liver function testing.
    • Typically there is a mild elevation of alanine aminotransferase (ALT) and aspartate aminotransferase (AST).
  • Dental enamel defects.
    • These can range from colour defects to structural defects symmetrically affecting deciduous, or more often, permanent teeth.
  • Hyposplenism or functional asplenia.
  • Down's syndrome, Turner syndrome, or Williams syndrome.

How should I assess a person with suspected coeliac disease?

If a person has a suspected diagnosis of coeliac disease:

• Ask about:
  • Symptoms of malabsorption, such as diarrhoea, steatorrhoea, weight loss, unexplained acid reflux, abdominal pain, bloating, constipation, and fatigue.
  • Any family history of coeliac disease.
  • Other risk factors for coeliac disease.
  • Any clinical features of complications.
  • Any associated conditions, such as type 1 diabetes mellitus or autoimmune thyroid disease.
• Examine the person:
  • Check the height and weight, and calculate the body mass index (BMI).
  • Assess the abdomen for pain or distention.
  • Carry out a general examination looking for other clinical features of coeliac disease such as oral ulcers, pallor, and dermatitis herpetiformis.
    • Note: fewer than 10% of people with dermatitis herpetiformis have symptoms or signs of malabsorption.
• Arrange coeliac serology testing:
  • Ensure that the person has eaten gluten-containing foods (with wheat, barley, or rye as an ingredient) in more than one meal a day, for a minimum of 6 weeks, before testing is performed.
  • Check the serum immunoglobulin (Ig)A tissue transglutaminase antibody (tTGA) and total IgA first-line. 
    • Explain that this test does not diagnose coeliac disease, but indicates whether further gastroenterology assessment is needed.
    • If IgA tTGA testing is unavailable, or if the result is weakly positive, check serum IgA endomysial antibody (EMA) second-line.
    • Consider checking serum IgG EMA, IgG deamidated gliadin peptide (DGP), or IgG tTGA if there is evidence of IgA deficiency — seek specialist advice if unsure.
    • Do not perform human leukocyte antigen (HLA) genetic testing in primary care to diagnose coeliac disease.
  • Consider re-testing if a person presents with new symptoms of coeliac disease, despite previous negative serology.
• Consider additional investigations such as:
  • Full blood count, ferritin, B12 and folate.
  • Liver function tests.
  • Vitamin D.
  • Bone chemistry.
  • Thyroid function tests.
• If serology results suggest a diagnosis of coeliac disease in young people and adults:
  • Arrange referral to a gastroenterologist, the urgency depending on clinical judgement, for specialist endoscopic intestinal biopsy to confirm or exclude the diagnosis. See the section on Interpreting serology results for more information.
  • Advise the person that they should continue to eat gluten-containing foods in more than one meal a day until specialist tests have been completed, even if serology is positive.
  • Explain that the diagnosis is confirmed if there are characteristic changes on histology of the small intestinal mucosa following biopsy.
• If coeliac disease is suspected in children:
  • Arrange referral to a paediatric gastroenterologist, the urgency depending on clinical judgement. See the section on Interpreting serology results for more information.
• If a diagnosis of dermatitis herpetiformis is suspected: 
  • Arrange referral to a dermatologist — skin biopsy may be indicated to confirm diagnosis.
• If a diagnosis of coeliac disease is strongly suspected, arrange referral for consideration of specialist tests even if serology is negative.

What else might it be?

Conditions that may present similarly to coeliac disease include:

• Infective gastroenteritis — see the CKS topic on Gastroenteritis for more information.
• Non-coeliac gluten sensitivity (NCGS) — a condition characterized by irritable bowel syndrome (IBS)-like symptoms and extra-intestinal manifestations, occurring a few hours or days after ingestion of gluten-containing foods. It typically improves rapidly with gluten withdrawal and relapses soon after gluten challenge. Coeliac serology tests are negative, and duodenal biopsy histology is normal or near normal.
• Food allergy — for example, to cow's milk or wheat. See the CKS topics on Cow's milk allergy in children and Food allergy for more information.
• Crohn's disease — see the CKS topic on Crohn's disease for more information.
• Microscopic colitis — see the CKS topic on Ulcerative colitis for more information.
• Irritable bowel syndrome — see the CKS topic on Irritable bowel syndrome for more information.
• Diverticular disease — see the CKS topic on Diverticular disease for more information.
• Peptic ulcer disease — see the CKS topic on Dyspepsia - proven peptic ulcer for more information.
• Malignancy — such as small bowel adenocarcinoma and enteropathy-associated T-cell lymphoma. See the CKS topics on Gastrointestinal tract (upper) cancers - recognition and referral and Haematological cancers - recognition and referral for more information.
• Food intolerances — for example, fructose or lactose intolerance. See the CKS topic on Food allergy for more information on how to differentiate food intolerance from food allergy.
• Pancreatic exocrine insufficiency.
• Hepatobiliary abnormalities — for example, autoimmune hepatitis and primary biliary cirrhosis. See the CKS topic on Jaundice in adults for more information.
• Small bowel bacterial overgrowth — which can cause malabsorption.
• HIV enteropathy — see the CKS topic on  HIV infection and AIDS for more information.

Scenario: Management of confirmed coeliac disease

From age 6 months onwards.

Gluten-free products

• Availability of gluten-free food on prescription varies widely according to location within the UK.
  • The national charity Coeliac UK (website available at www.coeliac.org.uk) has information on National prescribing guidelines, including monthly unit allocations for gluten-free products, depending on the age and sex of the person, and the country they are residing in.
  • Gluten-free items are allocated unit values based on their carbohydrate and energy content, and their cost.
  • A single prescription charge is incurred for each item, regardless of the quantity per item. If a person pays for prescriptions, it may be cheaper to buy a prescription pre-payment certificate (PPC) that allows the person to pay a set fee for either 3 or 12 months. Advise the person to discuss with a local pharmacist.
  • NHS prescriptions should be endorsed 'ACBS'.
    • In England, only bread and flour mixes are available to prescribe on the NHS.
    • In Northern Ireland, Scotland, and Wales, additional staple food groups such as breakfast cereals, crackers and crispbreads, oats, pasta, and pizza bases are available to prescribe on the NHS.
  • Prescribers should use their clinical judgement when prescribing and take energy requirements, activity level, and nutritional needs into account. Manufacturers may have trial packs of a variety of their products.
  • If there is uncertainty on what or how much to prescribe, liaise with a dietitian who has experience in managing coeliac disease.

[BNF, 2025]

Search strategy

Scope of search

A literature search was conducted for guidelines and systematic reviews on primary care management of coeliac disease.

Search dates

April 2020 - March 2025

Key search terms

The terms listed below are the core search terms that were used for EBSCOhost MEDLINE (searched 21st April 2020). These were combined with filters to identify guidelines, systematic reviews and primary care relevant literature in EBSCOhost MEDLINE. The strategy was adapted for The Cochrane Library databases. 

S5    S1 OR S2 OR S3 OR S4 
S4    AB gluten* N2 enteropath* OR TI gluten* N2 enteropath* 
S3    AB sprue OR TI sprue 
S2    AB ( celiac or coeliac ) OR TI ( celiac or coeliac ) 
S1    (MH "Celiac Disease") 

Sources of guidelines

• National Institute for Health and Care Excellence (NICE)
• Scottish Intercollegiate Guidelines Network (SIGN)
• Royal College of Physicians
• Royal College of General Practitioners
• Royal College of Nursing
• NICE Evidence
• World Health Organization
• Guidelines International Network
• TRIP database
• Agency for Healthcare Research and Quality
• Institute for Clinical Systems Improvement
• National Health and Medical Research Council (Australia)
• Royal Australian College of General Practitioners
• British Columbia Medical Association
• Canadian Medical Association
• Alberta Medical Association
• Michigan Quality Improvement Consortium
• Singapore Ministry of Health
• National Resource for Infection Control
• RefHELP NHS Lothian Referral Guidelines
• Medline (with guideline filter)
• Driver and Vehicle Licensing Agency
• NHS Health at Work (occupational health practice)

Sources of systematic reviews and meta-analyses

• The Cochrane Library:
  • Systematic reviews
  • Protocols
  • Database of Abstracts of Reviews of Effects
• Medline (with systematic review filter)
• EMBASE (with systematic review filter)

Sources of health technology assessments and economic appraisals

• NIHR Health Technology Assessment programme
• The Cochrane Library:
  • NHS Economic Evaluations
  • Health Technology Assessments
• Canadian Agency for Drugs and Technologies in Health
• International Network of Agencies for Health Technology Assessment

Sources of randomized controlled trials

• The Cochrane Library:
  • Central Register of Controlled Trials
• Medline (with randomized controlled trial filter)
• EMBASE (with randomized controlled trial filter)

Sources of evidence based reviews and evidence summaries

• Bandolier
• Drug and Therapeutics Bulletin
• TRIP database
• Central Services Agency COMPASS Therapeutic Notes

Sources of national policy

• Department of Health
• Health Management Information Consortium (HMIC)

Patient experiences

• Healthtalk
• BMJ - Patient Journeys

Sources of medicines information

The following sources are used by CKS pharmacists and are not necessarily searched by CKS information specialists for all topics. Some of these resources are not freely available and require subscriptions to access content.

• British National Formulary (BNF)
• electronic Medicines Compendium (eMC)
• European Medicines Agency (EMEA)
• LactMed
• Medicines and Healthcare products Regulatory Agency (MHRA)
• REPROTOX
• Scottish Medicines Consortium
• Stockley's Drug Interactions
• TERIS
• TOXBASE
• Micromedex
• UK Medicines Information

Stakeholder engagement

Our policy

The external review process is an essential part of CKS topic development. Consultation with a wide range of stakeholders provides quality assurance of the topic in terms of:

• Clinical accuracy.
• Consistency with other providers of clinical knowledge for primary care.
• Accuracy of implementation of national guidance (in particular NICE guidelines).
• Usability.

Principles of the consultation process

• The process is inclusive and any individual may participate.
• To participate, an individual must declare whether they have any competing interests or not. If they do not declare whether or not they have competing interests, their comments will not be considered.
• Comments received after the deadline will be considered, but they may not be acted upon before the clinical topic is issued onto the website.
• Comments are accepted in any format that is convenient to the reviewer, although an electronic format is encouraged.
• External reviewers are not paid for commenting on the draft topics.
• Discussion with an individual or an organization about the CKS response to their comments is only undertaken in exceptional circumstances (at the discretion of the Clinical Editor or Editorial Steering Group).
• All reviewers are thanked and offered a letter acknowledging their contribution for the purposes of appraisal/revalidation.
• All reviewers are invited to be acknowledged on the website. All reviewers are given the opportunity to feedback about the external review process, enabling improvements to be made where appropriate.

Stakeholders

• Key stakeholders identified by the CKS team are invited to comment on draft CKS topics. Individuals and organizations can also register an interest to feedback on a specific topic, or topics in a particular clinical area, through the Getting involved section of the Clarity Informatics website.
• Stakeholders identified from the following groups are invited to review draft topics:
  • Experts in the topic area.
  • Professional organizations and societies (for example, Royal Colleges).
  • Patient organizations, Clarity has established close links with groups such as Age UK and the Alzheimer’s Society specifically for their input into new topic development, review of current topic content and advice on relevant areas of expert knowledge.
  • Guideline development groups where the topic is an implementation of a guideline.
  • The British National Formulary team.
  • The editorial team that develop MeReC Publications.
• Reviewers are provided with clear instructions about what to review, what comments are particularly helpful, how to submit comments, and declaring interests.

Patient engagement

Clarity Informatics has enlisted the support and involvement of patients and lay persons at all stages in the process of creating the content which include:

• Topic selection
• Scoping of topic
• Selection of clinical scenarios
• First draft internal review
• Second draft internal review
• External review
• Final draft and pre-publication

Our lay and patient involvement includes membership on the editorial steering group, contacting expert patient groups, organizations and individuals.

Evidence exclusion criteria

Our policy

Scoping a literature search, and reviewing the evidence for CKS is a methodical and systematic process that is carried out by the lead clinical author for each topic. Relevant evidence is gathered in order that the clinical author can make fully informed decisions and recommendations. It is important to note that some evidence may be excluded for a variety of reasons. These reasons may be applied across all CKS topics or may be specific to a given topic.

Studies identified during literature searches are reviewed to identify the most appropriate information to author a CKS topic, ensuring any recommendations are based on the best evidence. We use the principles of the GRADE and PICOT approaches to assess the quality of published research. We use the principles of AGREE II to assess the quality of published guidelines.

Standard exclusions for scoping literature:

• Animal studies
• Original research is not written in English

Possible exclusions for reviewed literature:

• Sample size too small or study underpowered
• Bias evident or promotional literature
• Population not relevant
• Intervention/treatment not relevant
• Outcomes not relevant
• Outcomes have no clear evidence of clinical effectiveness
• Setting not relevant
• Not relevant to UK
• Incorrect study type
• Review article
• Duplicate reference

Organizational, behavioural and financial barriers

Our policy

The CKS literature searches take into consideration the following concepts, which are discussed at the initial scoping of the topic.

• Feasibility
  • Studies are selected depending on whether the intervention under investigation is available in the NHS and can be practically and safely undertaken in primary care.
• Organizational and Financial Impact Analysis
• Studies are selected and evaluated on whether the intervention under investigations may have an impact on local clinical service provision or national impact on cost for the NHS. The principles of clinical budget impact analysis are adhered to, evaluated and recorded by the author. The following factors are considered when making this assessment and analysis.
  • Eligible population
  • Current interventions
  • Likely uptake of new intervention or recommendation
  • Cost of the current or new intervention mix
  • Impact on other costs
  • Condition-related costs
  • In-direct costs and service impacts
  • Time dependencies
• Cost-effectiveness or cost-benefit analysis studies are identified where available. 

We also evaluate and include evidence from NICE accredited sources which provide economic evaluations of recommendations, such as NICE guidelines. When a recommended action may not be possible because of resource constraints, this is explicitly indicated to healthcare professionals by the wording of the CKS recommendation.

Declarations of interest

Our policy

Clarity Informatics requests that all those involved in the writing and reviewing of topics, and those involved in the external review process to declare any competing interests. Signed copies are securely held by Clarity Informatics and are available on request with the permission of the individual. A copy of the declaration of interest form which participants are asked to complete annually is also available on request. A brief outline of the declarations of interest policy is described here and full details of the policy is available on the Clarity Informatics website. Declarations of interests of the authors are not routinely published, however competing interests of all those involved in the topic update or development are listed below. Competing interests include:

• Personal financial interests
• Personal family interest
• Personal non-financial interest
• Non-personal financial gain or benefit

Although particular attention is given to interests that could result in financial gains or losses for the individual, competing interests may also arise from academic competition or for political, personal, religious, and reputational reasons. An individual is not obliged to seek out knowledge of work done for, or on behalf of, the healthcare industry within the departments for which they are responsible if they would not normally expect to be informed.

Who should declare competing interests?

Any individual (or organization) involved in developing, reviewing, or commenting on clinical content, particularly the recommendations should declare competing interests. This includes the authoring team members, expert advisers, external reviewers of draft topics, individuals providing feedback on published topics, and Editorial Steering Group members. Declarations of interest are completed annually for authoring team and editorial steering group members, and are completed at the start of the topic update and development process for external stakeholders.

Competing interests declared for this topic:

None.