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Coeliac Disease Care Pathway Overview

This pathway provides guidance to support the diagnosis, referral and optimal management of coeliac disease in adults in Gloucestershire.

Please see the Coeliac disease in children pathway here.

Adults

Please click the relevant flowchart box to be taken directly to textual information.

                                

Red Flags

Adults:

  • Unintentional or unexplained weight loss
  • Rectal bleeding
  • Anaemia
  • Abdominal, pelvic or rectal mass
  • Raised inflammatory markers
  • Aged over 45: Family history of bowel or ovarian cancer
  • Aged over 50: women with symptoms suggestive of ovarian cancer
  • Aged over 60: a change in bowel habit lasting more than 6 weeks with looser and/or more frequent stools
Presentation

Coeliac disease is an autoimmune condition associated with chronic inflammation of the small intestine. The auto-immune response is activated by gluten, a protein present in wheat, barley and rye, which can lead to systemic symptoms and malabsorption of nutrients. Coeliac disease can present with a wide range of clinical features, both gastrointestinal (such as indigestion, diarrhoea, abdominal pain, bloating, distension or constipation) and non-gastrointestinal (such as fatigue, anaemia (either iron deficiency or megaloblastic) dermatitis herpetiformis, osteoporosis, infertility, recurrent miscarriage or reproductive problems, neuropathy, ataxia or delayed puberty). Although some people present with the symptoms listed above, others will initially experience few or no symptoms.  

Coeliac disease is a common condition, but is underdiagnosed. Population screening studies suggest that 1% of the population in the UK are affected. People with conditions such as type1 diabetes, autoimmune thyroid disease, Down's and Turner syndromes are at a higher risk than the general population of having coeliac disease. First-degree relatives of a person with coeliac disease also have an increased likelihood of having the condition with risk rising to approx.10 percent in this group. Complications of coeliac disease include malabsorption of nutrients such as calcium, iron and Vitamin D, osteoporosis, infertility, hyposplenism and malignancy (intestinal lymphoma), so delayed diagnosis is of concern. With strict and ongoing gluten exclusion from the diet, clinical and histological improvements usually occur.

Diagnosis is via serological testing: Immunoglobulin A (IgA) endomysial antibody (EMA) and tissue transglutaminase (tTG). In cases of total IgA deficiency, immunoglobulin G (IgG) tTG may be used as an alternative serological measure. Diagnosis should be confirmed by oesophago-gastro-duodenoscopy (OGD) and duodenal biopsy.

The treatment of coeliac disease is a strict, lifelong gluten-free (GF) diet. This is challenging, so specific education, information and support; including advice on suitable foods in the diet to maintain a healthy and varied intake, provided by a health care professional with expert knowledge on the condition can increase the probability of dietary adherence and a positive prognosis.

Diagnosis

  • Persistent unexplained abdominal or gastrointestinal symptoms
  • Faltering growth
  • Prolonged fatigue
  • Unexpected weight loss
  • Severe or persistent mouth ulcers
  • Unexplained iron, vitamin B12 or folate deficiency
  • Type1 diabetes, at diagnosis
  • Autoimmune thyroid disease, at diagnosis
  • Irritable bowel syndrome (in adults)
  • First-degree relatives of people with coeliac disease.

  • Metabolic bone disorder (reduced bone mineral density or osteomalacia)
  • Unexplained neurological symptoms (particularly peripheral neuropathy or ataxia)
  • Unexplained subfertility or recurrent miscarriage
  • Persistently raised liver enzymes with unknown cause
  • Dental enamel defects
  • Down's syndrome
  • Turner syndrome

  • Type 1 Diabetes
  • Auto-immune thyroid disease
  • Rheumatoid arthritis
  • Addison’s disease
  • Sjogren’s syndrome

This presents as a blistering rash on bony extremities such as elbows, knees shoulder blades and scalp. Many patients do not present with associated bowel symptoms but presence of mucosal atrophy in the jejunum is often present on biopsy. 
Differential Diagnosis

Consider the conditions below in your differential diagnosis; please see the IBS pathway for further information.

Initial Assessment

If coeliac disease is suspected:

Ensure your patient has been following a gluten containing diet for at least 6 weeks (at least 2 slices of bread daily or equivalent) prior to serology testing and continues to consume gluten throughout the entire diagnostic process.

  • Request total immunoglobulin A (IgA) and IgA tissue transglutaminase (tTG) as the first choice
  • Request IgA endomysial antibodies (EMA) if IgA tTG is weakly positive
  • If IgA is deficient consider using immunoglobulin( IgG) EMA and IgG tTG

typing is only useful in certain circumstances and should not be used routinely to diagnose coeliac disease. At present HLA typing can only be requested in secondary care.

Request the following tests in addition to the above to exclude other diagnoses:

Excluding Bowel Cancer

  • Rectal mass (any age)
  • Abdominal mass (any age)
  • Aged under 50 with rectal bleeding AND any of the following unexplained symptoms:
    • Abdominal pain
    • Change in bowel habit
    • Weight loss
    • Iron-deficiency anaemia
  • Aged 40 and over with unexplained weight loss and abdominal pain
  • Aged 50 and over with unexplained rectal bleeding
  • Aged 60 and over with iron deficiency anaemia or changed in bowel habit.

If suspected, referral should be made by 2 week wait referral criteria.

NICE Pathway: Suspected cancer recognition and referral 2015.

Practice Point

Gloucestershire's Cancer Clinical Programme Group has agreed to deviate from NICE guidance in relation to the use of Faecal Occult Blood Tests (FOBTs) as it is no longer available to request in Gloucestershire. It is therefore recommended that GPs trust their clinical experience when deciding whether or not to refer symptomatic patients.

Initial Primary Care Management

If serology positive:

Refer directly to endoscopy services for oesophago-gastro-duodenoscopy (OGD) with duodenal/ jejunal biopsies to confirm diagnosis. It is not necessary to refer to gastroenterology consultant unless there are additional symptoms or the patient has other medical issues that might preclude the investigation. Ensure your patient remains on a gluten containing diet whilst awaiting OGD.

  • If serology is negative, but there is still a high clinical suspicion of coeliac disease, such as patients with positive family history refer to gastroenterology for further assessment.
  • Patients should be advised to remain on a gluten-containing diet until they have undergone endoscopy with biopsy.
When to Refer

Following confirmed coeliac diagnosis (biopsy demonstrating features of coeliac disease such as villous atrophy, significant presence of lymphocytes plus positive serology):

  • Patients should be directly referred to the dietetic-led coeliac clinic at GHNHSFT for detailed support, advice and review.
  • If diagnosis is in question e.g. equivocal biopsy result, or positive biopsy with negative serology, refer to Gastroenterology for further advice.
  • If coeliac disease is ruled out consider alternative diagnoses and follow appropriate pathway of care.

The above pathway aims to provide the necessary guidance required to support the management of your patient, however if you would like to discuss a specific patient's case further please seek Advice & Guidance, via the NHS e-Referral Service, from GHNHSFT's Consultant Gastroenterologists as an alternative to making a referral. Advice & Guidance can be helpful in the following circumstances:

  • For their advice on a treatment plan and/or the ongoing management of a patient
  • For clarification (or advice) regarding a patient's test results
  • For advice on the appropriateness of a referral for a patient (e.g. whether to refer, or what the most appropriate alternative care pathway might be)
  • To identify the most clinically appropriate service to refer a patient into

Please view the resource for further information on using the Advice & Guidance service.

Services

Patients remain under the care of GHNHSFT dietetic-led coeliac service for approx. 1 year following diagnosis (detailed care pathway can be seen below), after which they will be discharged back to primary care for ongoing annual review. If there is any concern regarding management or ongoing symptoms patients will remain under the care of the coeliac service.

Patients with known coeliac disease may be referred to the dietetic-led coeliac service if there are concerns regarding the management of their condition at annual review e.g. adherence to dietary restriction, recurrent anaemia, return of bowel symptoms, return of, or ongoing positive serology and possible refractory disease. If patients with existing coeliac disease present with new symptoms, consider red flags above and follow most appropriate pathway.
Secondary Care Management - GHNHSFT

Patients will be managed by the dietetic-led coeliac clinic (DLCC) as follows:

New patient group education session

  • information on the condition and its management
  • detailed advice on treatment with strict lifelong GF diet
  • naturally GF foods and GF alternatives available to purchase
  • food labelling, hidden gluten sources and cross-contamination
  • eating out and holidays
  • signposting to further sources of support e.g. Coeliac UK

  • individual appointment
  • PMHx and symptom review
  • anthropometrics
  • nutritional assessment:
    - of overall nutritional intake and
    - understanding of adherence with dietary restriction
  • advice if comorbidities, ongoing symptom management
  • provide form for monitoring bloods for 1st annual review (to be undertaken in primary care). (To include: FBC, folate, ferritin, serum B12, TTG, bone, LFT's, U&E's, sTSH and Vitamin D (as appropriate))
  • If improved and stable-discharge to GP for ongoing annual review

  • symptom and weight review
  • review monitoring bloods and advise / refer for further assessment  if concerns/ as needed*.
  • review adherence to and understanding of dietary restriction
  • if improved and stable - discharge to GP for ongoing annual review

Patients with known coeliac disease may be referred to the dietetic-led coeliac clinic if:

  • *positive serology on annual review
  • adherence with dietary restriction in question/ further dietary support needed
  • *symptom deterioration with good dietary adherence
  • *recurrent anaemia with other causes ruled out.
  • *education review
  • *pregnancy / change of health
  • DLCC have capacity to review and refer directly to gastroenterology for further Ix as needed e.g. query refractory disease.
Ongoing / Long-term Primary Care

The risk of osteoporosis and bone fracture is raised in those with coeliac disease.  Current guidelines suggest measurement of calcium, alkaline phosphatase, and Vitamin D levels (plus parathyroid hormone) at diagnosis, with appropriate replacement.

DEXA is indicated for those at increased risk only e.g. 2 or more of:

  • Persisting symptoms on gluten-free diet for 1 year
  • Poor adherence to gluten-free diet
  • Weight loss >10%
  • BMI < 20
  • Age >70

or 

  • those over 55 years of age after 1 year on diet

It is also important to consider other potential risk factors for osteoporosis – refer to NICE CG146 – Osteoporosis: assessing the risk of fragility fracture

If patient has an increased risk of fragility fracture – refer for DEXA scan via ICE.

NHS Gloucestershire CCG have mandated cessation of gluten-free prescribing unless under exceptional circumstances from 30 November 2016.  Please see the ‘Prescribing’ and ‘Patient & Carer Information’ sections of the pathway for further information and resources.

An annual review for adults with coeliac disease is required and should be carried out in primary care. This forms part of the NICE quality standard for coeliac disease .

Annual review should include:

  • Measurement of weight and height
  • Review of symptoms
  • Blood tests to include: FBC, folate, ferritin, serum B12, TTG, bone, LFT's, U&E's, sTSH and Vitamin D (as appropriate))
  • Consider the need for assessment of diet and adherence to the gluten-free diet – suggested questions to ask:
    - Are you incorporating GF alternatives and naturally GF sources of carbohydrate (such as potatoes, rice, quinoa and GF oats) regularly in your diet?
    - are you incorporating GF alternatives and naturally GF sources of carbohydrate (such as potatoes, rice, quinoa and GF oats) regularly in your diet?
    - are you confident checking ingredients lists and identifying suitable pre-prepared foods?
    - what steps are you taking to minimise the risk of cross-contamination when preparing food at home?
    - are you requesting additional information when eating out to ensure your meal choice is safe?

Following this, consider the need for:

Refer to the dietetic led coeliac clinic (see above) or consultant if concerns are raised in the annual review for further assessment and investigation as appropriate.

Practice Point

DEXA is indicated for those at increased risk only e.g. 2 or more of:

  • Persisting symptoms on gluten-free diet for 1 year
  • Poor adherence to gluten-free diet
  • Weight loss >10%
  • BMI < 20
  • Age >70

or

  • those over 55 years of age after 1 year on diet
Non-responsive and Refractory Coeliac Disease

Consider the following actions in people with coeliac disease who have persistent symptoms despite advice to exclude gluten from their diet:

  • refer the person to a specialist dietitian to investigate whether continued exposure to gluten
  • review the certainty of the original diagnosis
  • consider potential complications or coexisting conditions that may be causing persistent symptoms, such as irritable bowel syndrome, lactose intolerance, bacterial overgrowth, microscopic colitis or inflammatory colitis

Refractory coeliac disease can be diagnosed if the original diagnosis of coeliac disease has been confirmed, and exposure to gluten and any coexisting conditions have been excluded as the cause of continuing symptoms.

Refer those with possible refractory coeliac disease to a specialist centre for further investigation.

Prednisolone may be considered for the initial management of the symptoms of refractory coeliac disease in adults while waiting for specialist advice.

Other Online Resources

Other Online Resources

Significant Variations for this Pathway

NICE Coeliac disease: quality standard [QS134] (October 2016) states ‘health care professionals should help people who may need support to find suitable gluten-free foods on prescription to enable them to maintain a gluten-free diet.’

NHS Gloucestershire CCG have recommended the cessation of gluten-free prescribing unless under exceptional circumstances from 30 November 2016.  Please see the ‘Prescribing’ section of the pathway for further information.

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