GI · Full case

Coeliac Disease

NICE NG20 BSG 2014

1 in 100UK prevalence of coeliac disease

75%Undiagnosed in UK (under-recognition)

tTG-IgAFirst-line serological test (on gluten diet)

10×Increased risk: first-degree relative

Marsh IIIVillous atrophy: diagnostic on biopsy

6 weeksMin. gluten exposure before serology

3–6 monthsSerological response to GFD

10×Increased T-cell lymphoma risk (uncontrolled)

📋 Clinical Stem — Unexplained GI Symptoms with Possible Malabsorption

A patient presents with chronic diarrhoea, fatigue, and bloating that has been attributed to IBS, but serological testing reveals possible coeliac disease.

“A 34-year-old woman presents with a 2-year history of diarrhoea, abdominal bloating, fatigue, and intermittent mouth ulcers. She has been told she has IBS and was advised to follow a low-FODMAP diet, which she has been on for 4 months. She has lost 4 kg over the past year without trying. Her mother had coeliac disease. She is currently avoiding gluten as she ‘feels better’ on it. She wants to know if she should be tested for coeliac disease.”

This stem applies to any patient presenting with unexplained GI symptoms, malabsorption features (anaemia, weight loss, vitamin deficiencies), or a condition associated with coeliac disease (type 1 diabetes, thyroid disease, Down’s syndrome). The key clinical challenge is often that the patient has already started a gluten-free diet before testing.

Scenario A — Classic Malabsorption Presentation 28-year-old with chronic diarrhoea, weight loss, iron deficiency anaemia, and fatigue; previously labelled IBS; first-degree family history of coeliac

Scenario B — Atypical / Silent Presentation 45-year-old with type 1 diabetes presenting for routine review; incidental finding of iron deficiency; no GI symptoms; coeliac associated condition

Scenario C — Already on GFD Before Testing 38-year-old who started gluten-free diet after reading online; feels better; wants to know if they really have coeliac; serology will be falsely negative

Scenario D — Child via Parent Proxy Parent bringing 8-year-old with faltering growth, abdominal distension, and irritability; family history of coeliac; referral to paediatrics needed

Scenario E — Dermatitis Herpetiformis 42-year-old with intensely itchy vesicular rash on elbows and buttocks; no GI symptoms; dermatitis herpetiformis is coeliac disease of the skin

Key variables to adapt for GI vs atypical vs silent presentation, whether patient is on GFD already (critical — makes serology unreliable), associated conditions (T1DM, thyroid, Down’s, Turner’s), age, family history, specific nutritional deficiencies found, DH presentation

Steps:

Step 1

History Taking — Open Question First · Targeted Questions · ICE · Psychosocial Context

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Coeliac disease is a great imitator — it presents with a wide spectrum from classic malabsorption to entirely silent disease with only nutritional deficiencies or associated conditions. The GP’s history task is to recognise the pattern of coeliac presentation, identify features of malabsorption and associated conditions, and crucially establish whether the patient is currently eating gluten (which determines whether serological testing will be valid). Many patients present after self-initiating a gluten-free diet, making testing unreliable unless gluten is reintroduced for at least 6 weeks.

🎓 Consultation opener — use existing information first

“I can see from your notes that you have been having some bowel problems and tiredness for some time, and you have been on a low-FODMAP diet. I want to understand exactly what has been going on — could you tell me about it in your own words?”

Critical in this case: you must establish whether the patient is currently eating gluten before any serological testing. This affects the entire diagnostic plan and scores in the Tasks domain. Reference notes; do not re-ask documented information.

1A — Start with an open question: let the patient lead, then move to targeted questions

Question to ask	Why it matters clinically	Changes what?
🟩 OPEN QUESTION — always start here“Tell me about what has been going on with your health — your bowel symptoms, your energy levels, and everything you have noticed. I want to hear the full picture.”	Coeliac disease has a broad symptom spectrum. An open question allows patients to describe the full constellation of symptoms including extraintestinal features (fatigue, mouth ulcers, bone pain, neurological symptoms) that they may not realise are connected.Scores RO domain: patient-centred opening; allows natural emergence of associated symptoms and hidden concerns	DDxPsychosocialManagement
Current gluten intake — critical first question“Are you currently eating gluten — foods like bread, pasta, and cereals? Have you made any changes to your diet recently?”	This is the most important question in a suspected coeliac consultation. If the patient is already on a gluten-free or reduced-gluten diet, tTG-IgA serology will be falsely negative and cannot be relied upon for diagnosis. This changes the entire diagnostic pathway.If patient is on GFD: advise gluten challenge (10g/day for 6 weeks) before serology, or proceed directly to biopsy; never test tTG-IgA on a GFD	InvestigationsDDxManagement
Diarrhoea pattern and stool character“How often are your stools loose? Are they pale, bulky, or difficult to flush? Any urgency?”	Steatorrhoea (pale, bulky, difficult to flush stools) is a specific indicator of fat malabsorption and points to coeliac disease or other malabsorptive conditions. Urgency and frequency alone may suggest IBS; steatorrhoea strongly suggests organic malabsorption.Steatorrhoea in the context of other coeliac features is a strong indicator → expedite investigation and referral	DDxReferral
Fatigue and anaemia symptoms“How is your energy? Have you been feeling unusually tired? Any breathlessness, palpitations, or looking pale?”	Iron deficiency anaemia is one of the most common presentations of coeliac disease, particularly in women. B12 and folate deficiency can also cause macrocytic anaemia. Fatigue is almost universal in active coeliac disease and may be the sole presenting complaint in atypical presentations.Unexplained iron deficiency anaemia in any patient — particularly a woman of childbearing age — should prompt coeliac serology	DDxInvestigations
Weight changes“Have you noticed any change in your weight? Has there been any unintentional weight loss?”	Unintentional weight loss in coeliac disease reflects caloric malabsorption. In children, faltering growth is a key presenting feature. Weight loss alongside GI symptoms raises the prior probability of coeliac disease and mandates urgent investigation.In this case the patient has lost 4 kg unintentionally — this is clinically significant and changes triage to urgent	DDxReferralUrgent
Extraintestinal features“Have you had mouth ulcers, joint pains, skin problems, or tingling in your hands and feet? Any bone pain?”	Extraintestinal manifestations of coeliac disease include: recurrent aphthous ulcers, dermatitis herpetiformis (intensely itchy vesicular rash), peripheral neuropathy (gluten ataxia), osteoporosis, arthropathy, and dental enamel defects. These features are often not connected to GI symptoms by patients.Dermatitis herpetiformis is pathognomonic of coeliac disease — it is coeliac disease of the skin; biopsy of the rash establishes diagnosis	DDxInvestigations
Family history“Does anyone in your close family have coeliac disease or similar bowel problems? Any family history of autoimmune conditions?”	Coeliac disease has a strong genetic component — first-degree relatives have a 10× increased risk (10% prevalence). The genetic basis (HLA-DQ2/DQ8) means family history is both diagnostically important and triggers a management action (offer testing to first-degree relatives).Positive family history should lower the threshold for testing significantly and prompts discussion about cascade testing of relatives	DDxManagement
Associated conditions“Do you have type 1 diabetes, thyroid disease, or Down’s syndrome? Have you been told you have any autoimmune conditions?”	Coeliac disease is associated with multiple autoimmune conditions: type 1 diabetes (5–10% have coeliac), autoimmune thyroid disease (5× increased risk), Addison’s disease, and chromosomal conditions (Down’s syndrome, Turner’s syndrome). NICE NG20 mandates coeliac testing in all these groups.T1DM + coeliac is common and has important management implications — hypoglycaemia may improve significantly on GFD due to improved carbohydrate absorption	DDxInvestigationsManagement
Menstrual and reproductive history (women)“Have you had any problems with your periods? Any difficulties conceiving or previous miscarriages?”	Undiagnosed coeliac disease in women causes menstrual irregularity (oligomenorrhoea or amenorrhoea from malnutrition), subfertility, recurrent miscarriage, and intra-uterine growth restriction. A GFD normalises reproductive outcomes. This history is frequently overlooked in GI-focused consultations.Recurrent miscarriage + anaemia + GI symptoms in a woman = coeliac screen mandatory	DDxManagement
Bone health“Have you had any bone pain, fractures from minor injuries, or been told your bones are thin?”	Calcium and vitamin D malabsorption in coeliac disease causes osteomalacia and accelerated osteoporosis. Low bone mineral density (BMD) is present in many patients at diagnosis and is often subclinical. Fracture history or DEXA findings of low BMD should prompt coeliac screen.DEXA scan should be arranged at diagnosis; BMD often improves significantly on GFD but may require calcium and vitamin D supplementation	DDxManagement
Neurological symptoms“Have you noticed any tingling, numbness, balance problems, or memory difficulties?”	Gluten ataxia (cerebellar ataxia associated with anti-gliadin antibodies) and gluten peripheral neuropathy are neurological manifestations that may occur with or without GI symptoms. They are frequently missed and may not reverse fully on GFD if diagnosis is delayed.Neurological coeliac manifestations: refer to neurology alongside gastroenterology; GFD may arrest progression but not always reverse established damage	DDxReferral

1B — Red flags: must not miss · must ask · must act

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Red Flags — act before continuing history

Red flag	Why dangerous	Action
Refractory coeliac disease (symptoms persisting on strict GFD >12 months)	Refractory coeliac disease (RCD type I and II) is associated with development of enteropathy-associated T-cell lymphoma (EATL), a life-threatening complication. Any patient on a confirmed strict GFD who remains symptomatic requires urgent gastroenterology assessment.	Urgent gastroenterology referral
Unintentional weight loss alongside GI symptoms	Weight loss in coeliac disease may indicate severe malabsorption requiring nutritional support, or it may indicate EATL. Any significant unintentional weight loss warrants urgent assessment and investigation.	Urgent investigation; consider gastroenterology
Rectal bleeding	Coeliac disease does not cause rectal bleeding. This feature mandates exclusion of CRC, IBD, or other pathology independently of the coeliac diagnosis. Two-week wait referral criteria apply.	2WW CRC referral
Rapidly progressive neurological symptoms (ataxia, peripheral neuropathy)	Gluten ataxia and gluten neuropathy can cause permanent neurological damage if undiagnosed. Rapidly progressive cerebellar or peripheral nervous system symptoms require urgent neurology referral.	Urgent neurology referral
Severe anaemia (Hb <80 g/L) or haemodynamic compromise	Severe iron deficiency anaemia from malabsorption may require parenteral iron infusion or transfusion. This represents a serious nutritional emergency and may indicate significant mucosal damage.	Same-day haematology review or hospital admission
Abdominal mass or lymphadenopathy	Abdominal lymphadenopathy or mass in the context of coeliac disease raises the possibility of EATL or other GI malignancy. This is a cancer until proven otherwise.	Urgent 2WW investigation
Night sweats, fever, or drenching sweats alongside GI symptoms	B-symptoms (night sweats, fever, weight loss) in the context of coeliac disease must raise suspicion for lymphoma. These require urgent investigation with CT chest/abdomen/pelvis and haematology referral.	Urgent haematology investigation

🛡️

Safeguarding Considerations — Consider in Every Consultation

Undiagnosed coeliac disease in children can constitute a safeguarding concern. Faltering growth, malnutrition, and developmental delay caused by unrecognised coeliac disease can be misidentified as neglect or emotional abuse. Conversely, a child who is not growing adequately despite an adequate diet may have coeliac disease that a carer is failing to recognise and present for treatment. Prompt diagnosis and GFD compliance monitoring is essential for children.

🏠 Domestic Abuse / Intimate Partner Violence

Restrictive dietary control by a partner (controlling what food is bought and prepared) may prevent a coeliac patient from adhering to a gluten-free diet
A partner who sabotages the GFD by contaminating food is a recognised form of intimate partner abuse with direct medical harm
Unexplained ongoing symptoms on an apparently strict GFD may reflect covert gluten exposure from a controlling partner
Screen sensitively if GFD non-adherence seems inconsistent with the patient’s stated motivation and efforts

👴 Older Adults / Malnutrition Risk

Late-diagnosed coeliac disease in older adults may present as significant malnutrition, weight loss, and muscle wasting that could be attributed to neglect
Older adults in care settings may have difficulty adhering to GFD if staff are not trained or if GFD food is not adequately provided
Cognitive decline may impair the ability to understand or adhere to a GFD — carer support and dietitian input is essential
Osteoporosis from coeliac disease increases fall and fracture risk — bone protection and fall prevention must be addressed

👦 Children — Faltering Growth and Development

Undiagnosed coeliac disease is a recognised cause of faltering growth and may be misidentified as neglect or inadequate feeding
Children with Down’s syndrome have a 10–15% prevalence of coeliac disease — systematic screening is recommended
A carer who does not adhere to prescribed GFD in a child with confirmed coeliac disease may be causing harm through medical neglect
School-age children need an Individual Healthcare Plan (IHP) for GFD provision at school; failure to arrange this is a safeguarding gap

💊 Non-Adherence and Self-Harm via Diet

Deliberate repeated gluten exposure in a patient with confirmed coeliac disease carries risk of intestinal lymphoma and progressive mucosal damage — this may reflect self-neglect or be a manifestation of mental health crisis
Eating disorder behaviours (restriction beyond GFD, compensatory behaviours) are elevated in coeliac disease — screen with SCOFF questionnaire
Patients who are non-adherent should be explored with curiosity and compassion, not judgement; financial barriers to GFD are a real and documented issue

If a safeguarding concern is identified: Follow your practice safeguarding policy. For children with coeliac disease and carer non-adherence with GFD: consider referral to Children’s Social Care if the non-adherence is causing measurable harm (faltering growth, nutritional deficiencies) and is not being addressed despite support. Document all dietary counselling provided and the patient/carer’s response.

1C — PMH · FH · Drug history · Social history: management impact

🧬 PMH / FH — changes management

Factor	Why it matters	Management impact
Type 1 diabetes mellitus	5–10% of T1DM patients have coeliac disease; GFD improves glycaemic control by normalising carbohydrate absorption	NICE NG20: offer coeliac testing to all T1DM patients; GFD may require insulin dose adjustment; shared care with diabetology
Autoimmune thyroid disease	5× increased risk of coeliac disease; thyroid function may improve on GFD through reduced autoimmune load	Screen with tTG-IgA; thyroid medication dose may need adjustment on GFD; annual thyroid function review
Down’s syndrome	10–15% prevalence of coeliac disease; often silent or atypical presentation; routine screening recommended	NICE NG20: offer coeliac testing; GFD adherence support essential; liaise with specialist services
Turner’s syndrome	Higher prevalence of coeliac disease; growth failure may be attributed to Turner’s rather than coeliac	Screen with tTG-IgA; ensure coeliac diagnosis not masked by growth hormone treatment
Osteoporosis or low bone mineral density	Calcium and vitamin D malabsorption from untreated coeliac disease accelerates bone loss	DEXA scan at diagnosis; calcium and vitamin D supplementation; GFD improves BMD over 1–2 years
First-degree relative with coeliac disease	10× increased risk (10% prevalence); often prompted by family diagnosis to seek testing	Offer tTG-IgA testing; inform patient of 10% risk; cascade test other first-degree relatives at diagnosis
Recurrent miscarriage or subfertility	Undiagnosed coeliac disease causes subfertility and recurrent miscarriage through malnutrition and immune mechanisms	Coeliac screen mandatory in recurrent miscarriage workup; GFD improves reproductive outcomes; refer to obstetrics if pregnant
Previous diagnosis of IBS	Up to 5% of IBS diagnoses are actually undiagnosed coeliac disease; IBS-type symptoms should not preclude coeliac testing	Screen with tTG-IgA; if positive, biopsy confirms diagnosis and IBS label is removed; GFD replaces FODMAP

💊 Drug history · Social history — clinical impact

Factor	Why it matters	Management impact
Iron supplements (current)	Iron supplementation masks iron deficiency anaemia and may normalise FBC, obscuring malabsorption	Document iron supplement use; FBC may appear normal but ferritin may still be low; coeliac screen still valid
PPI (proton pump inhibitor) use	PPIs can cause false-positive IgA results; also associated with nutritional malabsorption independently	Note PPI use; does not invalidate tTG-IgA testing but may affect IgA levels; document in referral
Immunosuppressants or biologics	Suppress IgA production and cause false-negative serology	IgA-based serology unreliable; proceed directly to duodenal biopsy; discuss with gastroenterology
NSAID or aspirin use	Can cause intestinal mucosal damage mimicking coeliac enteropathy on biopsy; also causes GI symptoms	Document NSAID use in referral for biopsy; may cause false-positive biopsy changes; stop if possible before biopsy
Financial barriers to GFD	Gluten-free products cost 3–5× more than standard equivalents; socioeconomic factors directly affect adherence	Refer to dietitian; consider GFD prescription items (limited list in UK); social prescribing and food bank links where appropriate
Occupation (food preparation, hospitality)	Restaurant and kitchen workers face significant cross-contamination exposure risk and may find GFD socially and occupationally challenging	Discuss strategies for cross-contamination avoidance at work; dietitian input; legal right to GFD accommodation
Social eating and cultural food practices	GFD can significantly disrupt social eating, cultural and religious food practices (e.g. Holy Communion — gluten-free wafers are available)	Address cultural and religious implications; dietary advice must be culturally sensitive; psychosocial support for dietary adjustment
Alcohol use	Beer contains gluten; spirits are generally safe; labelling of alcoholic drinks for gluten content is inconsistent	Advise on gluten content of alcoholic drinks; certified gluten-free beer alternatives; wine and spirits generally safe

1D — ICE: Ideas · Concerns · Expectations — in every consultation, not just SCA

Coeliac disease has profound implications for daily life — the GFD is lifelong, expensive, socially isolating, and requires vigilance about hidden gluten in medications, toiletries, and shared kitchen surfaces. Patients presenting for diagnosis or follow-up often have complex concerns: fear of cancer risk, confusion about whether they “really” have the condition (especially if they tested themselves with self-kits), anxiety about the GFD’s social impact, or uncertainty about whether their family should be tested. Exploring ICE reveals the specific barriers to adherence and the patient’s understanding of the long-term consequences of non-adherence.

💭 Ideas

“What is your understanding of coeliac disease? What do you think it means for your day-to-day life and your health going forward?”

Many patients have significant misconceptions about coeliac disease — that it is a food allergy (it is an autoimmune condition), that occasional gluten exposure is harmless (it is not), or that the GFD is optional if symptoms are mild (it is lifelong regardless of symptoms because of cancer risk). Uncovering these beliefs is essential for adherence counselling.

😟 Concerns

“Is there anything specific you are worried about with this diagnosis — perhaps about cancer risk, the diet, or what it means for your family?”

The most common concerns are: risk of intestinal lymphoma (should be quantified — adherent patients have near-normal risk), impact of GFD on social life, financial cost of GFD, concern about children or siblings needing testing, and worry about accidental gluten exposure causing harm.

🎯 Expectations

“What were you hoping today’s appointment would help you with? Is there something specific you were hoping I could do for you?”

Patients may expect a specific test (often requesting tissue transglutaminase antibody test by name after reading online), a gluten challenge protocol, dietitian referral, or clarity about whether family members should be tested. Eliciting this allows negotiation and avoids disappointing the patient when the plan differs from their expectation.

1E — Psychosocial context: the person behind the coeliac diagnosis

The gluten-free diet is one of the most socially and psychologically demanding dietary prescriptions in medicine. It is lifelong, requires constant vigilance in social and professional settings, is significantly more expensive than a standard diet, and creates a persistent sense of being “different” that affects mental health, relationships, and quality of life. These psychosocial factors both cause the patient to present for diagnosis and directly determine long-term adherence to the GFD — the cornerstone of treatment.

🥗 Anxiety about Food and Social Eating

The constant vigilance required to avoid hidden gluten creates significant food-related anxiety. Cross-contamination risk in restaurants, other people’s kitchens, and at social events causes patients to avoid eating out, refuse social invitations, and experience disproportionate anxiety about meals.

“How are you finding eating out and social situations with the diet? Is the worry about accidentally eating gluten affecting how much you are going out?”

Significant social avoidance → psychological support; occupational impact from dietary vigilance → occupational health; CBT for health anxiety if food anxiety is severe

💹 Financial Stress from GFD Cost

Gluten-free products cost 3–5 times more than standard equivalents. The additional food cost of a GFD in the UK is estimated at £800–£1,500 per year. For patients on low incomes, this creates a direct barrier to adherence that is rarely acknowledged in clinical consultations.

“The gluten-free diet can be significantly more expensive — is the cost a barrier for you in any way? I want to make sure the diet is actually achievable for your situation.”

Refer to dietitian for budget GFD strategies; consider GFD prescription (limited availability in UK); social prescribing; Coeliac UK membership provides practical support

😢 Grief and Adjustment to Diagnosis

Many patients experience a grief response after coeliac diagnosis — for the foods they love, for the spontaneity of their previous relationship with food, and for their sense of “normal.” This adjustment phase is normal but can be protracted and may impair early adherence to the GFD.

“How are you feeling about the diagnosis itself — it is quite a big change to your life. It is completely normal to find it difficult to adjust at first.”

Normalise the adjustment response; Coeliac UK peer support; psychology referral if adjustment response is prolonged or severe

👤 Identity and Sense of Difference

The GFD creates a persistent social identity as “the person with the dietary restriction.” In work, family, and social contexts, having to constantly explain and manage the diet creates fatigue and social stigma that erodes quality of life and motivation for adherence over time.

“Do you find it tiring always having to explain your diet to people? I ask because the social burden of coeliac disease is real and it affects how people manage in the long term.”

Peer support via Coeliac UK; online communities; normalise the long-term nature of the adjustment; address burnout in follow-up appointments

🎯 Guilt Around Accidental Exposure or Non-Adherence

Patients who accidentally consume gluten or who have periods of non-adherence often experience significant guilt, particularly when they understand the cancer implications. This guilt can paradoxically make patients less likely to disclose non-adherence in clinical consultations, impeding accurate assessment.

“How has the diet been going? I ask in a completely non-judgmental way — I know it is very hard to be 100% strict all the time, and it is important for me to understand the real picture.”

Non-judgmental approach to non-adherence; tTG-IgA serology is a reliable marker of adherence — a raised level at follow-up indicates ongoing gluten exposure without requiring patient disclosure

👥 Impact on Family Dynamics

Coeliac disease affects the whole household. Family members may need to be tested (10% risk in first-degree relatives). The household diet may need to change to reduce cross-contamination risk. Children with coeliac disease affect family eating habits, school interactions, and social events like birthday parties.

“Has the diagnosis affected your family life and how the household eats? And have you thought about whether your close relatives should be tested as well?”

Advise cascade testing of first-degree relatives (10% risk); separate gluten-free food preparation areas in household; family dietitian consultation beneficial

🎓 SCA Checkpoint — Step 1TasksRelating to OthersGlobal Skills

Key phrases that score

“Before anything else — are you currently eating gluten? This is really important because it affects whether the blood test will be reliable.”

“Coeliac disease is an autoimmune condition, not a food allergy — even tiny amounts of gluten cause real damage to the gut, whether or not you have symptoms.”

“Given your mother has coeliac disease, your chance of having it yourself is about 1 in 10 — so it absolutely makes sense to test you.”

“Is the cost or social side of being gluten-free a concern for you? I want to make sure we address everything, not just the medical side.”

Deductions (examiner flags)

Ordering tTG-IgA without first establishing whether the patient is currently eating gluten
Not asking about extraintestinal features (mouth ulcers, bone pain, skin rash, neurological symptoms)
Failing to cascade test first-degree relatives after diagnosis
Describing coeliac disease as a “food allergy” rather than an autoimmune condition
Not asking about associated conditions (T1DM, thyroid disease)
Missing the psychosocial burden of the GFD in the management discussion

🔴 Red — failing

tTG-IgA ordered without checking gluten intake · No extraintestinal features explored · Associated conditions not asked about · No family cascade testing discussed

🟠 Amber — borderline

Gluten intake checked but importance not explained to patient · Some extraintestinal features explored · Family history noted but cascade testing not addressed

🟢 Green — passing

Gluten intake established first · Full symptom spectrum explored · Associated conditions asked about · Family history elicited · Cascade testing discussed · GFD psychosocial burden acknowledged

Step 2

Triage Engine — Emergency · Urgent · Routine

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Most new coeliac presentations are managed routinely in primary care with serological testing followed by gastroenterology referral for biopsy. However, complications of coeliac disease (refractory disease, EATL, severe malnutrition) are serious and require urgent assessment. The key triage decision is whether this is a new uncomplicated presentation, a complicated presentation with red flags, or a follow-up of known coeliac disease with concern about non-adherence or complications.

🔴 Emergency

999 or Same-Day Hospital

Call 999 / A&E now

Severe haemodynamically compromising anaemiaHb <70 g/L with haemodynamic compromise — may require blood transfusion; same-day hospital admission
Acute severe abdominal pain with peritonismPossible intestinal perforation or obstruction; EATL complication; 999 immediately
Acute severe malnutrition or electrolyte disturbanceSevere hypoalbuminaemia, hypokalaemia, or hyponatraemia from malabsorption — hospital admission for nutritional support
Rapidly progressive neurological symptomsAcute gluten ataxia; rapidly progressive cerebellar syndrome — urgent neurology; A&E if haemodynamically unstable
Anaphylaxis to food (wheat allergy — distinct from coeliac)Immediate anaphylaxis management; adrenaline; 999 — distinguish wheat allergy from coeliac disease

🟠 Urgent

Urgent Referral / Investigation

Days to 2 weeks

Suspected EATL (B-symptoms, abdominal mass, palpable LN)Night sweats, fever, weight loss, lymphadenopathy in a coeliac patient → urgent haematology/CT imaging — 2WW pathway
Refractory coeliac disease (symptoms persisting on strict GFD >12 months)Urgent gastroenterology referral; requires investigation for RCD type II and EATL
Unintentional weight loss >3 kg with GI symptomsUrgent investigation for malabsorption severity and malignancy exclusion; GI referral within 2 weeks
Positive tTG-IgA requiring biopsy confirmationRoutine-urgent gastroenterology referral for duodenal biopsy within 4–6 weeks; do not start GFD before biopsy
Severe anaemia (Hb <80 g/L) from malabsorptionSame-day haematology review; consider parenteral iron infusion; investigate cause urgently
Symptomatic coeliac patient who is pregnantUrgent obstetric co-management; GFD essential in pregnancy to reduce miscarriage, growth restriction, and preeclampsia risk

🟢 Routine

Manage in Primary Care / Routine Referral

GP practice

Suspected coeliac — positive tTG-IgA, asymptomatic or mildly symptomatic, on gluten dietRoutine-urgent GI referral for biopsy; advise patient to continue gluten until biopsy date
First-degree relative screening (no symptoms)Offer tTG-IgA; if positive, refer for biopsy; if negative, advise repeat if symptoms develop
Annual review of established coeliac on GFDtTG-IgA as adherence marker; FBC, ferritin, folate, B12, vitamin D; dietitian review; DEXA if indicated
Associated condition screening (T1DM, autoimmune thyroid)Offer tTG-IgA per NICE NG20; if positive, refer for biopsy; integrate into annual review
Atypical presentation — unexplained iron deficiency without GI symptomstTG-IgA as part of iron deficiency investigation; if positive, GI referral for biopsy

🎓 SCA Checkpoint — Step 2TasksRelating to OthersGlobal Skills

Key phrases that score

“The most important thing right now is that you do not start a gluten-free diet until we have done the blood test and, if needed, the biopsy — because the test only works if you are eating gluten.”

“Given your symptoms and weight loss, I want to make sure we investigate this urgently rather than waiting.”

“If this is confirmed as coeliac disease, your close family members — your children, parents, and siblings — should also be offered a test, because the condition runs in families.”

Deductions (examiner flags)

Advising the patient to start a GFD before biopsy confirmation — this invalidates the diagnostic process
Not identifying unintentional weight loss as an urgent red flag requiring expedited investigation
Missing the cascade testing obligation for first-degree relatives
Failing to advise the patient to continue eating gluten until after the biopsy

🔴 Red — failing

GFD advised before biopsy · Weight loss not recognised as urgent feature · Cascade testing not mentioned

🟠 Amber — borderline

Biopsy referral made but patient not advised to continue gluten · Urgency not communicated clearly · Cascade testing mentioned but not actioned

🟢 Green — passing

Patient explicitly advised to continue gluten until biopsy · Weight loss escalated appropriately · Cascade testing plan communicated · Referral pathway explained to patient

Step 3

Do I Need This Examination?

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Physical examination in suspected coeliac disease seeks to establish the degree of malabsorption and nutritional compromise, identify extraintestinal manifestations that support the diagnosis, and detect complications including malignancy. A patient with mildly positive serology and no systemic features may have a near-normal examination; a patient with severe malabsorption will have multiple positive signs. Every finding must be documented as it informs the urgency of referral and the nutritional management plan.

Examination	Why it matters	What finding changes management	Changes management?
Weight and BMI; muscle bulk and nutritional status	Malnutrition and muscle wasting indicate severe malabsorption. Weight loss of >5% from usual body weight is clinically significant. Sarcopenia from protein and caloric malabsorption requires nutritional support alongside GFD.Document current weight and compare to previous recorded weights; calculate percentage weight change	Significant malnutrition → dietitian urgent referral; consider parenteral nutritional support; expedite GI referral	YES — if significant malnutrition or weight loss
Conjunctival pallor; peripheral signs of anaemia	Iron deficiency anaemia is one of the most common presenting features of coeliac disease. Pallor, angular cheilitis, koilonychia (spoon nails), and glossitis indicate significant iron deficiency. B12/folate deficiency causes macrocytic features.Angular cheilitis and glossitis are classic features of combined iron, B12, and folate deficiency from malabsorption	Clinical anaemia → FBC, iron studies, B12, folate urgently; parenteral iron if severe; expedite investigation	YES — anaemia changes management urgency
Abdominal examination — distension, tenderness, masses	Mild abdominal distension from malabsorption and gas production is common. A palpable abdominal mass in a coeliac patient raises concern for EATL or mesenteric lymphadenopathy. Peritonism suggests perforation or obstruction — surgical emergency.Any palpable abdominal mass in a coeliac patient must be treated as malignancy until proven otherwise	Palpable mass → 2WW CT imaging; peritonism → 999; ascites → urgent investigation	YES — if mass, organomegaly, or peritonism
Skin examination — dermatitis herpetiformis (DH)	Dermatitis herpetiformis is an intensely itchy vesicular rash on extensor surfaces (elbows, knees, buttocks, scalp, shoulders). It is pathognomonic of coeliac disease and constitutes a diagnosis of coeliac even without GI symptoms or positive serology. Skin biopsy showing IgA deposits confirms DH.DH is coeliac disease of the skin; a skin biopsy of perilesional skin showing IgA deposits confirms diagnosis without duodenal biopsy	DH found → referral to dermatology for skin biopsy; this IS coeliac disease; start GFD + consider dapsone	YES — DH changes diagnostic pathway entirely
Oral examination — aphthous ulcers, dental enamel defects, glossitis	Recurrent aphthous ulcers are a recognised extraintestinal manifestation of coeliac disease. Dental enamel defects (hypoplasia of permanent teeth) may indicate coeliac disease acquired in childhood. Glossitis indicates B12 or folate deficiency.Recurrent mouth ulcers in any patient should prompt consideration of coeliac screen if not already done	Aphthous ulcers + other coeliac features → strengthens indication for tTG-IgA testing; glossitis → check B12, folate	Context — supports diagnosis
Neurological examination — peripheral sensation, coordination, balance	Gluten neuropathy causes length-dependent peripheral neuropathy. Gluten ataxia causes cerebellar dysfunction (gait ataxia, limb ataxia, nystagmus). These may be the sole presenting features of coeliac disease with no GI symptoms. Testing: check vibration sense, proprioception, Romberg, finger-nose test.Neurological features must be documented carefully — GFD may arrest but not reverse established gluten neuropathy or ataxia	Neurological signs → urgent neurology referral; MRI brain/spine; anti-gliadin antibody testing	YES — neurological signs mandate urgent neurology referral
Lymph node examination — cervical, axillary, inguinal	Lymphadenopathy in a coeliac patient — particularly one who is symptomatic on a GFD (refractory disease) — raises concern for enteropathy-associated T-cell lymphoma (EATL). Any palpable lymph nodes require urgent investigation with CT and haematology referral.EATL has a poor prognosis — early detection through maintaining a high index of suspicion in symptomatic coeliac patients on GFD is critical	Palpable lymph nodes → 2WW haematology/CT; consider urgent referral	YES — changes to urgent cancer investigation pathway
Bone tenderness — spine, shins, ribs	Osteomalacia from vitamin D and calcium malabsorption causes diffuse bone tenderness, particularly in the spine, lower legs, and ribs. This may be the presenting feature of coeliac disease in older adults. Looser zones on X-ray confirm osteomalacia.Bone pain + low vitamin D + anaemia = investigate for coeliac disease before attributing to simple vitamin D deficiency	Bone tenderness → vitamin D, calcium, PTH urgently; X-ray for Looser zones; DEXA scan; vitamin D replacement	Context — if osteomalacia suspected

🎓 SCA Checkpoint — Step 3TasksRelating to OthersGlobal Skills

Key phrases that score

“I would like to examine you today — I want to check your weight and look for any signs of nutritional deficiency, and also check your skin and lymph nodes.”

“I can see you have some pallor around your eyes, which suggests your iron levels may be quite low — that fits with what you have been experiencing.”

“There is no sign of any lymph node enlargement, which is reassuring — that is something I always check in people with coeliac disease.”

Deductions (examiner flags)

Not checking for dermatitis herpetiformis in a patient with an itchy skin rash
Failing to check lymph nodes in a patient with refractory symptoms on GFD
Not documenting current weight and comparing to previous records
Missing oral features (aphthous ulcers, glossitis, dental enamel defects)

🔴 Red — failing

No examination offered · DH rash attributed to eczema without biopsy · Lymphadenopathy found but not acted upon

🟠 Amber — borderline

Examination done but findings not communicated clearly · Weight not documented · Skin not examined systematically

🟢 Green — passing

Weight documented and change calculated · Nutritional signs assessed · Skin and oral examined · Lymph nodes palpated · Findings explained in plain language

Step 4

Do I Need This Investigation?

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The investigation of suspected coeliac disease is sequential: serology first (on a gluten-containing diet), then biopsy if serology is positive. Never order tTG-IgA in a patient who is already on a gluten-free diet — the result will be unreliable. If the patient is on a GFD and refuses gluten challenge, refer directly for duodenal biopsy or genetic testing (HLA-DQ2/DQ8). The nutritional profile at diagnosis guides supplementation and forms the baseline for monitoring GFD response.

Investigation	Clinical question it answers	What result changes management?
tTG-IgA (Tissue Transglutaminase IgA) — first-line serology	Is there serological evidence of gluten-triggered autoimmunity? tTG-IgA has 95% sensitivity and 98% specificity for coeliac disease. This is the NICE NG20-recommended first-line test. MUST be done while patient is eating gluten (ideally ≥1 slice bread daily for ≥6 weeks).	Positive tTG-IgA → refer for duodenal biopsy; do NOT start GFD before biopsy · Negative tTG-IgA on gluten diet → coeliac unlikely; consider other diagnoses · Borderline → repeat in 3–6 months or check HLA genotype
Total serum IgA level	Selective IgA deficiency (1 in 500 general population; higher in coeliac) causes false-negative tTG-IgA serology. Must always be checked alongside tTG-IgA to validate the result.	Low total IgA (<0.2 g/L) → tTG-IgA is unreliable; request IgG-based coeliac antibodies (tTG-IgG or DGP-IgG) or refer for biopsy directly
FBC (Full Blood Count)	Anaemia is one of the most common presenting features of coeliac disease. Iron deficiency causes microcytic anaemia; B12/folate deficiency causes macrocytic anaemia; combined deficiency may produce a normocytic picture masking significant pathology.	Microcytic anaemia (low MCV, low ferritin) → iron deficiency from malabsorption; macrocytic anaemia → B12/folate deficiency; thrombocytopenia → consider hyposplenism (coeliac-associated)
Iron studies (serum ferritin, iron, TIBC), serum folate, serum B12	Nutritional profile at diagnosis establishes baseline for monitoring GFD response and guides supplementation. Ferritin is the most sensitive marker of iron stores. All three are commonly deficient in active coeliac disease due to proximal small bowel malabsorption.	Low ferritin → oral iron (with parenteral if severe); low B12 → IM hydroxocobalamin or high-dose oral; low folate → folic acid supplement; all should normalise on GFD over 3–6 months
Vitamin D (25-OH cholecalciferol) and calcium	Vitamin D and calcium malabsorption in the proximal small intestine causes osteomalacia and accelerates osteoporosis. Vitamin D deficiency is extremely common at coeliac diagnosis. Calcium and vitamin D supplementation is essential until GFD restores absorption.	Low vitamin D (<30 nmol/L) → high-dose replacement (800–1000 IU cholecalciferol daily); low calcium → calcium supplements; arrange DEXA scan at diagnosis
LFTs, albumin	Coeliac disease causes transaminitis in 20–40% of patients at diagnosis (“cryptogenic hypertransaminasaemia”), which normalises on GFD. Hypoalbuminaemia indicates severe malabsorption and protein malnutrition requiring nutritional support.	Raised ALT/AST → document; repeat at 6 months on GFD (should normalise) · Hypoalbuminaemia (<35 g/L) → expedite referral; dietitian input; consider nutritional support
Thyroid function (TSH)	Autoimmune thyroid disease is 5× more common in coeliac disease. Hypothyroidism causes fatigue and GI symptoms mimicking active coeliac. TSH should be checked at diagnosis and monitored on GFD (thyroid function may change).	Abnormal TSH → treat thyroid disease concurrently; note that levothyroxine absorption may improve on GFD, potentially requiring dose reduction
HLA-DQ2/DQ8 genetic testing	HLA genotyping has very high negative predictive value (99%): a patient negative for both DQ2 and DQ8 is extremely unlikely to have coeliac disease. Useful when: patient is already on GFD and refuses gluten challenge, or serology results are discordant.	Negative HLA-DQ2 and DQ8 → coeliac disease effectively excluded; avoid need for gluten challenge · Positive → does not confirm coeliac but allows gluten challenge to be offered with confidence
DEXA scan (dual-energy X-ray absorptiometry)	Assesses bone mineral density (BMD) at diagnosis. Low BMD is common due to calcium/vitamin D malabsorption. Provides baseline for monitoring and guides decision on bone-protective treatment in addition to GFD.	T-score <–2.5 (osteoporosis) → bisphosphonate after GFD established and calcium/vitamin D optimised · T-score –1.0 to –2.5 (osteopaenia) → calcium + vitamin D + GFD; repeat DEXA at 3–5 years

🎓 SCA Checkpoint — Step 4TasksRelating to OthersGlobal Skills

Key phrases that score

“The blood test I am going to do is called tTG-IgA — but it only works reliably if you are eating gluten. Since you have been avoiding it, we need to plan for that carefully.”

“Alongside the coeliac test, I also want to check your iron, B12, folate, and vitamin D, because these are commonly low in coeliac disease and affect how you feel.”

“We also need to check your total IgA level — this is important because a low IgA can make the coeliac test appear falsely negative.”

Deductions (examiner flags)

Ordering tTG-IgA without checking whether the patient is on a GFD
Not ordering total serum IgA alongside tTG-IgA
Not ordering nutritional markers (ferritin, folate, B12, vitamin D) as part of the diagnostic screen
Starting the GFD before the biopsy has confirmed the diagnosis

🔴 Red — failing

tTG-IgA ordered on GFD patient without gluten challenge discussion · Total IgA not ordered · GFD started before biopsy

🟠 Amber — borderline

tTG-IgA ordered correctly but nutritional screen incomplete · Gluten intake checked but gluten challenge not discussed · DEXA not considered

🟢 Green — passing

Gluten intake established first · tTG-IgA + total IgA ordered · Full nutritional screen ordered · GFD deferred until biopsy explained · DEXA and thyroid discussed

Step 5

Reaching a Diagnosis & DDx — Explained in Plain Language

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Coeliac disease is diagnosed by the combination of positive serology (tTG-IgA) AND characteristic histological changes on duodenal biopsy (Marsh grade II–III). In children <15 years, ESPGHAN guidelines allow diagnosis without biopsy if tTG-IgA is >10 times the upper limit of normal AND HLA-DQ2/DQ8 is positive AND the patient responds to GFD. In adults, biopsy is required. The diagnosis must be communicated in plain language that addresses the patient’s specific concerns.

🗣️ Explaining the Diagnosis in Plain Language — say something like this

“What you have is called coeliac disease. It is an autoimmune condition — not a food allergy — where gluten, which is a protein in wheat, barley, and rye, triggers your immune system to attack the lining of your small intestine. Over time, this damages the tiny finger-like projections called villi that absorb nutrients from your food. That is why you have been feeling tired and losing weight — your gut has not been absorbing nutrients properly. The good news is that this is entirely reversible: a strict gluten-free diet allows the gut lining to heal completely. Most people feel significantly better within a few weeks and their gut fully recovers over 1–2 years. The key word is ‘strict’ — even tiny amounts of gluten continue to trigger the immune attack, even if you cannot feel it.”

💬 Addressing the patient’s own explanation — why it may not be the full picture

“I started the gluten-free diet months ago and feel much better — so I must have coeliac disease, right?”
“It is really good that you are feeling better — that is an important clue. But we cannot actually confirm coeliac disease until you have a biopsy of the small intestine, and that biopsy only shows the characteristic changes if you have been eating gluten. The challenge is that you will need to eat gluten again for about 6 weeks before the biopsy — I know that feels daunting when you are feeling so much better on the diet. Can we talk about whether that is something you would be willing to do?”

“I thought coeliac was an allergy — my child’s school is asking whether it is a food allergy.”
“Coeliac disease is actually an autoimmune condition, not an allergy — it is important to explain this clearly to the school. It is not a reaction like a nut allergy that causes immediate symptoms. Instead, gluten triggers a slow immune attack on the gut lining that continues even without obvious symptoms. Every exposure matters, including crumbs. The school will need to provide a completely gluten-free diet — I can provide a letter explaining this.”

A — Diagnosable / Confirmed in Primary Care + GI

Serology + biopsy confirms

Coeliac Disease (classical)

Positive tTG-IgA + Marsh II/III biopsy changes + clinical features of malabsorption. The definitive diagnosis requiring lifelong GFD.

Dermatitis Herpetiformis (DH)

Coeliac disease presenting as intensely itchy vesicular rash on extensor surfaces. Diagnosed by skin biopsy showing IgA deposits. IS coeliac disease — manage with GFD and dermatology co-management for dapsone.

Potential / Latent Coeliac

Positive serology but normal biopsy (Marsh 0–I). Patient is at risk; GFD not mandated; monitor with annual serology and repeat biopsy if symptoms develop.

B — Differential Requiring Distinction

Require active exclusion

IBS (commonly confused)

Up to 5% of IBS diagnoses mask coeliac disease. IBS does not cause weight loss, iron deficiency, or Marsh histological changes. tTG-IgA testing must be done on gluten diet before IBS label is confirmed.

Non-Coeliac Gluten Sensitivity (NCGS)

GI and extraintestinal symptoms related to gluten intake; negative serology; normal biopsy; HLA-DQ2/DQ8 may be negative. Managed with GFD but long-term consequences are less severe than coeliac.

Crohn’s Disease of the Small Bowel

Malabsorption, weight loss, anaemia, abdominal pain — but transmural granulomatous inflammation on biopsy; negative tTG-IgA; raised CRP and calprotectin.

Tropical Sprue / Bacterial Overgrowth

Malabsorption and villous atrophy without coeliac serology; relevant in travellers; treated with antibiotics not GFD.

C — Complications Requiring Urgent Action

Diagnose & act urgently

Refractory Coeliac Disease (RCD)

Persistent symptoms on strict GFD >12 months despite confirmed adherence. Type II RCD has 50% risk of EATL within 5 years. Urgent gastroenterology referral with CT and endoscopy.

Enteropathy-Associated T-Cell Lymphoma (EATL)

Coeliac-associated lymphoma; B-symptoms, abdominal mass, palpable lymph nodes; urgent CT, biopsy, haematology referral; poor prognosis; 2WW pathway.

Hyposplenism and Splenic Atrophy

Occurs in 30–40% of coeliac patients; increases risk of encapsulated organism infections (pneumococcal, meningococcal, Hib). Vaccinations and antibiotic prophylaxis required.

📊 Marsh Classification of Duodenal Histology — Determines Diagnostic Confidence

Marsh Grade	Histological features	Interpretation	Management implication
Marsh 0	Normal villous architecture; normal IEL count	Normal	Coeliac excluded if on gluten diet; consider other diagnoses; check IgA levels
Marsh I	Increased intraepithelial lymphocytes (>25/100 epithelial cells); normal villi	Borderline	May be early/latent coeliac, NCGS, or other; monitor with annual serology; GFD not mandated
Marsh II	Increased IEL + crypt hyperplasia; villi preserved	Likely coeliac	With positive serology = coeliac diagnosis; start GFD after gastroenterology confirms
Marsh IIIa/b/c	Villous atrophy (partial to complete); crypt hyperplasia; increased IEL	Confirmed coeliac	Definitive diagnosis: GFD lifelong; nutritional supplementation; DEXA; cascade family testing; annual review
⚠ Critical rule: The patient must be eating gluten (ideally ≥10g/day = 1–2 slices bread) for at least 6 weeks before biopsy. A patient on a GFD at the time of biopsy may show normal histology despite having coeliac disease, leading to a missed diagnosis. Document gluten intake in the referral letter.

🎓 SCA Checkpoint — Step 5TasksRelating to OthersGlobal Skills

Key phrases that score

“Coeliac disease is an autoimmune condition — your immune system attacks the lining of your gut in response to gluten. It is not a food allergy.”

“Even if you have no symptoms when you eat gluten, the damage is still happening — which is why the diet needs to be strict and lifelong, not just when you feel unwell.”

“The blood test shows what we expected, and now we need a small biopsy from your small intestine to confirm the diagnosis officially before you start the diet.”

Deductions (examiner flags)

Describing coeliac disease as a “food allergy” or “gluten intolerance”
Advising GFD before biopsy confirms the diagnosis
Not explaining that asymptomatic gluten exposure still causes damage
Failing to discuss the cancer risk of long-term non-adherence

🔴 Red — failing

Coeliac called a food allergy · GFD started before biopsy · Mechanism not explained · Lifelong nature not communicated

🟠 Amber — borderline

Diagnosis communicated but mechanism poorly explained · Biopsy need mentioned but not why gluten must be continued until then

🟢 Green — passing

Autoimmune mechanism explained · Distinction from food allergy made · Lifelong nature explained · Asymptomatic damage concept communicated · Biopsy before GFD clearly stated

Step 6

If Referral Is Needed — What the GP Does Before & During

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Coeliac disease diagnosis requires a multidisciplinary approach: gastroenterology for biopsy and specialist management, dietitian for GFD education and nutritional monitoring, and in children paediatric gastroenterology. The GP’s role is to ensure the referral pathway is correct (including confirming gluten intake status), start nutritional supplementation while awaiting biopsy, arrange appropriate investigations, and communicate the management plan clearly to the patient.

Condition	Urgency	What GP does before referral	What GP must NOT do
Positive tTG-IgA — biopsy confirmation required	Routine-urgent GI	Confirm patient is on gluten diet and advise to remain so until biopsy date; start nutritional supplementation (iron, folate, B12, vitamin D as indicated); document gluten intake status in referral letter; order full nutritional screen before referral	Do NOT advise GFD before biopsy — this invalidates histological diagnosis; do NOT diagnose coeliac disease on serology alone without biopsy in adults
Patient already on GFD — cannot reintroduce gluten	Routine GI / HLA testing	Order HLA-DQ2/DQ8 genetic testing; if negative: coeliac effectively excluded; if positive: discuss gluten challenge (10g/day for 6 weeks) or proceed to biopsy knowing it may be normal; document in referral	Do NOT perform tTG-IgA serology on a patient who has been on GFD — result is unreliable; do NOT diagnose or exclude coeliac on GFD without genetic testing
Refractory coeliac disease (symptoms on strict GFD)	Urgent GI (2 weeks)	Confirm GFD adherence with dietitian review and tTG-IgA (should be undetectable on strict GFD); arrange CT abdomen to exclude EATL; check immunoglobulins and TTG again; document symptom duration on GFD	Do NOT assume symptoms are due to dietary non-adherence without objective assessment; do NOT delay referral in a patient with B-symptoms and refractory disease
Suspected EATL (B-symptoms, abdominal mass, lymphadenopathy)	2WW Haematology/CT	Arrange urgent CT chest/abdomen/pelvis; refer to haematology simultaneously; do not delay for GI referral; document B-symptoms and clinical findings clearly in referral; inform patient of urgency	Do NOT wait for GI appointment in a patient with B-symptoms and a suspected lymphoma; do NOT attribute B-symptoms to active coeliac disease without EATL exclusion
Dermatitis herpetiformis (suspected)	Routine Dermatology	Do NOT biopsy the lesion itself; refer for perilesional skin biopsy by dermatology; do not start GFD before skin biopsy confirmation; check tTG-IgA alongside (may be negative in DH); document skin lesion distribution and character	Do NOT prescribe topical steroids as definitive treatment for DH; do NOT start GFD before skin biopsy; DH is coeliac disease of the skin — both conditions require treatment
Dietitian referral (all confirmed coeliac)	Routine Dietetics	Refer all confirmed coeliac patients to a FODMAP/coeliac-trained dietitian; provide diagnosis date, current nutritional status, and living situation; advise patient to join Coeliac UK for interim support and resources while awaiting appointment	Do NOT provide comprehensive GFD advice without specialist dietitian input — hidden gluten sources (medications, communion wafers, cross-contamination) require expert knowledge
First-degree relative cascade testing	Routine Primary Care	Advise index patient to inform first-degree relatives of 10% risk; offer tTG-IgA testing to any relative who presents; if symptomatic: same investigation pathway; children with a first-degree relative should be offered screening	Do NOT test tTG-IgA in relatives who are on a GFD or low-gluten diet; check gluten intake first before any serological testing

🎓 SCA Checkpoint — Step 6TasksRelating to OthersGlobal Skills

Key phrases that score

“I am going to refer you to a specialist at the hospital who will do a small biopsy of your small intestine to confirm the diagnosis — until then, please keep eating gluten, because the biopsy needs to see the changes that gluten causes.”

“I will also refer you to a specialist dietitian who will guide you through the gluten-free diet properly — there are a lot of hidden sources of gluten that most people do not know about.”

“Your close family members — your parents, children, and siblings — have about a 1 in 10 chance of having coeliac disease as well. I would recommend they get a blood test, particularly if they have any similar symptoms.”

Deductions (examiner flags)

Telling the patient to start the GFD before the biopsy appointment
Not mentioning dietitian referral as a core part of the management plan
Failing to advise cascade testing of first-degree relatives
Not explaining what will happen at the gastroenterology referral

🔴 Red — failing

GFD started before biopsy · Dietitian not mentioned · Family cascade testing not addressed · No follow-up planned

🟠 Amber — borderline

GI referral made correctly but patient not advised to continue gluten · Dietitian mentioned but not as concrete referral · Cascade testing mentioned but not actioned

🟢 Green — passing

Continue gluten until biopsy explicitly stated · GI referral explained · Dietitian referral made · Cascade family testing plan explained · Coeliac UK membership suggested · Follow-up arranged

Step 7

Management — Expectation · Goals · Lifestyle · Drug Cards · Psychosocial · Follow-Up · Safety-Netting

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The gluten-free diet (GFD) is the sole evidence-based treatment for coeliac disease — it is lifelong, non-negotiable, and must be complete and strict. There is no pharmacological alternative. Management in primary care focuses on: confirming the diagnosis before starting GFD, correcting nutritional deficiencies, preventing long-term complications (osteoporosis, lymphoma, anaemia), monitoring GFD adherence with annual serology, and supporting the patient through the significant psychosocial challenges of lifelong dietary restriction.

7A — Address the patient’s expectation first: validate → explain → negotiate

🤝

The most common patient expectation in coeliac disease: “can I just start the diet now?”

Validate — acknowledge the desire to start the diet immediately

Patients who feel better on a GFD are naturally eager to maintain it. Asking them to continue eating gluten until after the biopsy feels counterintuitive and frustrating. Acknowledging this conflict is essential for the therapeutic relationship and for patient concordance with the pre-biopsy gluten requirement.

“I completely understand why you want to carry on with the diet — you feel so much better on it, and that makes perfect sense. What I need to explain is why we need to do one more step first.”

Explain — why gluten must continue until biopsy

The duodenal biopsy only shows characteristic changes if the patient is actively consuming gluten. A patient on a GFD may have a normal-looking biopsy, leading to a missed diagnosis and no access to dietetic support, prescription GFD foods, or annual monitoring.

“The biopsy is looking for changes in the lining of your gut that only appear when you are eating gluten. If you have stopped gluten, those changes will already have started healing — and the biopsy could look normal, meaning we could miss the diagnosis entirely.”

Negotiate — offer a concrete plan with a fixed endpoint

The patient needs to know this is temporary, time-limited, and that starting the GFD officially will be the very next step after biopsy. A clear timeline reduces the psychological burden of the gluten challenge period.

“The biopsy referral usually takes 4–6 weeks. If you can eat gluten normally until then, we will have a definitive diagnosis and you can start the gluten-free diet officially on the day of the biopsy or immediately after. After that, you will never need to eat gluten again.”

7B — Why treatment matters: goals tailored to this patient

Treatment goals for coeliac disease

Symptom resolution — diarrhoea, bloating, fatigue within 4–8 weeks of GFD tTG-IgA normalisation within 3–6 months of strict GFD Nutritional normalisation — iron, folate, B12, vitamin D within 6–12 months Bone mineral density stabilisation and improvement on GFD + calcium/vitamin D Achieve and maintain Marsh 0 histology on repeat biopsy (if done at 1–2 years) Fully functional social and occupational life maintained on GFD Cascade testing of all first-degree relatives offered and documented Annual review confirmed — serology, nutritional bloods, dietitian contact, symptom check

Motivational language — tailored to the patient

“Most people feel dramatically better within weeks of starting the diet — the fatigue lifts, the bloating resolves, and the gut lining starts to heal. That is worth the short-term inconvenience of the biopsy process.”

“The reason the diet needs to be strict rather than mostly gluten-free is that even small exposures continue to trigger immune damage in the gut — even if you feel fine after eating them. This is not about willpower; it is biology.”

7C — The Gluten-Free Diet — mechanism, evidence, and practical guidance

🚫

Foods to Avoid Absolutely

Wheat, barley, rye — all forms and derivatives

What to avoid

All wheat-containing foods: bread, pasta, pizza, biscuits, cakes, crackers, cereals. Barley (including barley malt, beer, barley water). Rye (rye bread, crispbreads). Spelt, kamut, and farro are all forms of wheat — not safe for coeliac.

Hidden gluten

Soy sauce (usually contains wheat), malt vinegar, many processed foods, soups, sauces, gravies, seasonings, ready meals, some medications (excipients), communion wafers, and lipstick/lip balm (relevant if ingested).

Complete gluten avoidance is the only intervention that prevents ongoing mucosal damage — the effect of even small exposures is cumulative and subclinical

✅

Foods Naturally Gluten-Free

Form the nutritional backbone of the GFD

Safe starches

Rice, potatoes, sweet potatoes, quinoa, buckwheat, millet, sorghum, teff, corn/maize, tapioca. All plain fresh meat, fish, eggs, dairy, fruit, and vegetables are naturally gluten-free.

Oats

Pure uncontaminated oats (certified GF oats) are tolerated by most coeliacs. However, 5–10% of patients react to avenin in oats (oat-sensitive coeliac). NICE NG20 advises to introduce certified GF oats after diagnosis when clinically stable.

A nutritionally varied, naturally gluten-free diet is healthier and cheaper than relying on processed gluten-free substitutes — dietitian guidance is essential

⚠️

Cross-Contamination Prevention

Even crumbs cause mucosal damage in coeliac disease

In the home

Separate toasters (shared toasters retain crumbs), separate chopping boards, separate butter dishes (bread crumbs contaminate shared butter), separate colanders for GF pasta. Clean surfaces and utensils before GF food preparation.

Eating out

Alert staff when ordering; request GF food prepared in a separate area with separate utensils; use the Coeliac UK restaurant guide for vetted establishments. RADAR key for accessible toilets. Carry GF snacks when travelling.

Cross-contamination is the most common cause of ongoing serology positivity in patients who believe they are adhering to a strict GFD

💊

Gluten in Medications

Check every medication at initiation — excipients may contain starch

Which medications

Tablet excipients (fillers and binders) may contain wheat starch. Most medicines in the UK are labelled for gluten content. Generic medicines may differ from branded formulations. Check the SPC or contact the manufacturer for confirmation.

Specifically

Check: Ferrous fumarate tablets, some calcium supplements, some multivitamins. When dispensing medications to coeliac patients, always verify gluten content. Pharmacists are the key resource for this.

Unrecognised gluten in medications is a documented cause of refractory symptoms in patients on an apparently strict GFD

🏫

Children at School and Nursery

Individual Healthcare Plan (IHP) required for every child with coeliac disease

Legal obligations

Schools have a legal duty under the School Food Standards to provide medically required dietary modifications. The GP must provide a letter confirming the diagnosis and dietary requirements. An Individual Healthcare Plan (IHP) should be agreed between parents, school, and health services.

Practical aspects

Birthday parties, school trips, cooking classes, and communion are all high-risk situations requiring specific planning. Advise parents to communicate proactively with school and carry GF snacks for unexpected situations.

Without an IHP, children with coeliac disease are at significant risk of ongoing gluten exposure in school — this constitutes a safeguarding gap

🌎

Travel and Eating Out

Preparation and communication are the keys to safe eating away from home

Eating out

Use Coeliac UK’s restaurant guide for vetted establishments. In restaurants: clearly state dietary requirement (not just preference), ask about separate preparation areas, avoid high-contamination environments (chip shops, bakeries, shared fryers). RADAR key provides access to accessible toilets in urgency.

International travel

Coeliac UK provides dining cards translated into multiple languages. Research destination-specific GF options before travel. Self-catering accommodation reduces eating-out risk. Pack GF snacks and essential items as luggage.

Eating out is achievable on a GFD with preparation — social eating is an important quality-of-life goal that the dietitian can specifically address

7D — Prescribing guide: nutritional supplementation and bone protection

There is no pharmacological treatment for coeliac disease itself — the GFD is the treatment. However, nutritional supplementation is required at diagnosis to correct deficiencies caused by malabsorption, and bone-protective treatment may be needed for established osteoporosis. Supplementation should be continued until nutritional markers normalise on GFD (typically 3–12 months), then reviewed and discontinued if normal.

Acute deficiencies — start immediately

Iron deficiency: Ferrous fumarate 210mg TDS (verify GF formulation); parenteral iron infusion if severe (Hb <80 or oral intolerance)
Folate deficiency: Folic acid 5mg OD for 4 months (standard replacement dose)
B12 deficiency: Hydroxocobalamin 1mg IM every other day for 2 weeks, then every 3 months OR high-dose oral B12 1000mcg OD if no neurological features
Vitamin D deficiency: Loading dose if <25 nmol/L (e.g. 50,000 IU weekly for 6–10 weeks), then maintenance 800–1000 IU OD; verify GF formulation

Ongoing bone health management

DEXA scan at diagnosis: Arrange for all adults; compare to age-matched norms
Calcium: Dietary calcium optimisation first (dairy, fortified plant milk, tinned salmon, broccoli); supplement 1000–1200mg/day if diet inadequate
Vitamin D maintenance: 800–1000 IU OD indefinitely unless serum 25-OH-D ≥50 nmol/L on dietary sources alone
Osteoporosis (T-score <–2.5): Bisphosphonate (alendronate 70mg weekly) after GFD established and calcium/vitamin D optimised; verify GF formulation
Repeat DEXA: At 3–5 years on GFD; BMD typically improves significantly on strict GFD

Vaccinations — hyposplenism risk

30–40% of coeliac patients have hyposplenism (splenic atrophy); this increases risk of invasive disease from encapsulated organisms
Pneumococcal vaccine (PCV13 + PPV23): Offer at diagnosis and per JCVI schedule
Meningococcal vaccines (MenACWY, MenB): Offer at diagnosis
Haemophilus influenzae type b (Hib): Offer at diagnosis if not previously immunised
Annual influenza vaccine: Recommended; increased infection risk
Document hyposplenism status and vaccination history in patient records clearly

7E — Key clinical decision — patient on GFD before diagnosis

Diagnostic pathway depends on current gluten intake — check first

Currently eating gluten daily (≥1 slice bread) Currently on gluten-free diet Partially reduced gluten Refuses gluten challenge

Diagnostic pathway decision tree

Eating gluten daily: tTG-IgA + total IgA → if positive, refer for duodenal biopsy → start GFD after biopsy
On GFD: Do NOT do tTG-IgA → HLA-DQ2/DQ8 genetic test → if negative: coeliac excluded; if positive: discuss 6-week gluten challenge or direct biopsy
Partial gluten: Advise return to full gluten (≥10g/day) for ≥6 weeks → then tTG-IgA → biopsy if positive
Refuses challenge: HLA-DQ2/DQ8 → if negative: reassure; if positive: refer to GI for biopsy on GFD knowing limitations

7F — Drug reference cards: coeliac pharmacotherapy

Oral Iron Supplementation

Ferrous fumarate 210mg · Ferrous sulphate 200mg · Ferrous gluconate 300mg

✓ Recommended

Deficiency correction 210mg TDS (fumarate) · Verify GF

✓ Prefer when

Iron deficiency anaemia confirmed on FBC and iron studies at diagnosis

Moderate anaemia (Hb 80–110 g/L) without haemodynamic compromise

Patient is able to tolerate oral iron and GFD is being established (absorption will improve)

✗ Avoid / change if

Severe anaemia Hb <80 g/L with symptoms → switch to parenteral iron infusion (IV ferric carboxymaltose)

GI intolerance (nausea, constipation) → switch to ferrous gluconate (better tolerated) or alternate day dosing

🔴 Always verify gluten-free formulation — tablet excipients may contain wheat starch

⚠ Side effects and counselling

Constipation, nausea, dark stools (normal — reassure), abdominal cramps

Take on empty stomach for best absorption; if intolerable, take with food (reduces absorption but improves tolerance)

Do not take with calcium supplements, tetracyclines, or quinolones within 2 hours — reduces iron absorption

🔬 Monitor

FBC and ferritin at 3 months and 6 months; target Hb normalisation within 3 months

If ferritin fails to normalise on oral iron despite GFD adherence: reconsider diagnosis or compliance; check tTG-IgA

Continue iron until ferritin >50 μg/L and Hb normal; typically 3–6 months

💬 Counselling

“This iron tablet replaces the iron your body has not been absorbing properly because of the coeliac disease. Take it on an empty stomach if you can. Your stools may turn black — this is normal and safe. Once you are fully on the gluten-free diet, your absorption should improve and eventually you may not need the supplements at all.”

SCA pearl: Always verify that iron supplements (and ALL supplements prescribed to coeliac patients) are in a gluten-free formulation. Unrecognised gluten in medications is a documented cause of treatment failure. Pharmacist involvement is essential. This level of prescribing detail demonstrates safe prescribing practice and scores in the Tasks domain.

Vitamin D + Calcium

Colecalciferol 800–1000 IU OD · Calcium carbonate 1000mg OD · Combined preparations (Adcal-D3)

✓ Recommended

Bone protection 800–1000 IU OD · Verify GF

✓ Use when

All coeliac patients at diagnosis — vitamin D deficiency is almost universal

Low DEXA BMD (osteopaenia or osteoporosis) — combined calcium and vitamin D before bisphosphonate

Dietary calcium intake below 1000mg/day — supplement to reach target while gut healing occurs on GFD

✗ Cautions

Hypercalcaemia — check corrected calcium before starting supplementation; stop if calcium rises above normal

Sarcoidosis or granulomatous disease — vitamin D supplementation can worsen hypercalcaemia; seek specialist advice

Verify GF formulation — calcium carbonate and colecalciferol preparations may use excipients containing gluten

🔬 Monitor

Serum 25-OH-D and corrected calcium at 3 and 6 months; target vitamin D >50 nmol/L

DEXA scan at diagnosis; repeat at 3–5 years on GFD to assess BMD response

Once vitamin D normalised on GFD with adequate dietary calcium: can reduce supplementation if ongoing monitoring confirms sufficiency

💬 Counselling

“Coeliac disease means your gut has not been absorbing calcium and vitamin D properly, which can affect your bone strength. These supplements replace what you have been missing. Once the gluten-free diet has healed your gut, your absorption will improve, but supplementation is important in the meantime and you will have a bone density scan to check your bones.”

SCA pearl: Prescribing Adcal-D3 to a coeliac patient without checking its gluten content is a patient safety error. Always check the SPC or consult the pharmacist. Documenting awareness of this risk in the clinical notes demonstrates safe prescribing. Mention DEXA scan at diagnosis as part of the management plan — this scores in the Tasks domain.

Folic Acid

Folic acid 5mg tablets

✓ Recommended

Deficiency correction 5mg OD for 4 months

✓ Use when

Folate deficiency confirmed at diagnosis (low serum folate; macrocytic anaemia)

Women with coeliac disease planning pregnancy — folic acid 5mg OD recommended throughout first trimester (higher dose than standard)

Combined iron/folate deficiency — treat both concurrently

✗ Important considerations

Always exclude B12 deficiency before starting folic acid alone — folate supplements can mask B12 deficiency and precipitate subacute combined degeneration of the spinal cord

Never give folic acid without checking B12 first — this is a serious and scored clinical error in the SCA

🔬 Monitor

Serum folate and FBC at 3 months; should normalise with combination of GFD + supplementation

In pregnancy: monitor folate and haematinics at each trimester; refer to obstetric team for high-risk pregnancy pathway

💬 Counselling

“This tablet replaces folate — a B vitamin — that your gut has not been absorbing properly. It will help correct your anaemia alongside the iron. The gluten-free diet should allow your gut to start absorbing it from food again, so you will not need to take it indefinitely.”

SCA pearl: Prescribing folic acid without checking B12 first is a patient safety error that is explicitly scored in medical finals and SCA examinations. Always check B12 alongside folate — coeliac disease causes both deficiencies, and treating folate without correcting B12 can trigger neurological deterioration.

Vaccinations — Hyposplenism Protocol

Pneumococcal · Meningococcal · Hib · Annual influenza

✓ Recommended at diagnosis

Prevention Per JCVI / PHE schedule

✓ Required vaccines

Pneumococcal conjugate vaccine (PCV13 / Prevenar 13) + pneumococcal polysaccharide vaccine (PPV23) — 8 weeks apart; booster every 5 years if ongoing hyposplenism

Meningococcal ACWY (MenACWY) and MenB — single dose unless ongoing hyposplenism risk

Haemophilus influenzae type b (Hib) if not previously fully immunised

Annual influenza vaccination — register on practice hyposplenism/splenic dysfunction register

⚠ Why this matters

30–40% of adults with coeliac disease develop functional hyposplenism (reduced splenic function) even without frank splenic atrophy on imaging

Hyposplenism dramatically increases risk of overwhelming post-splenectomy infection (OPSI) from encapsulated organisms (pneumococcus, meningococcus, Hib)

OPSI has mortality of 50–70% — preventable with vaccination and patient education about febrile illness

💬 Counselling

“Coeliac disease can affect how your spleen works over time. Your spleen is part of your immune defence against certain serious infections. Because of this, I need to make sure you are vaccinated against some important bacteria. I will also register you so you receive reminders for these vaccinations going forward.”

SCA pearl: Hyposplenism and vaccination need in coeliac disease is a frequently missed management action in clinical examinations. Offering these vaccinations at diagnosis and explaining why demonstrates awareness of the long-term complications of coeliac disease and scores in the Tasks domain. Register the patient on your hyposplenism register.

7G — Psychosocial impact: work, relationships, travel & daily life

🤝

The lifelong GFD — addressing the full social, financial, and emotional burden

The gluten-free diet is one of the most socially restricting medical interventions in primary care. Unlike other chronic disease treatments, the GFD affects every meal, every social occasion, every restaurant visit, and every relationship with food and eating. Its psychological burden is often underestimated by clinicians. Proactively addressing these domains in the management consultation is as important as the clinical pharmacology, and directly determines long-term adherence.

💹

Financial Cost of GFD

GFD food costs £800–£1,500 more per year than a standard diet. For low-income families, this is a direct barrier to adherence. Coeliac UK estimates that GF bread alone costs 5× the price of standard bread.

Practical options: naturally GF foods (rice, potatoes, legumes) are affordable; GF prescription foods are available for some patients on certain CCG/ICS areas (increasingly limited); Coeliac UK membership provides product guides and discount access.

“The cost of gluten-free products is a real issue for many people. I want to make sure the diet we are recommending is actually affordable and achievable for you. Has the dietitian spoken to you about cost-effective ways of eating gluten-free?”

😢

Grief Response to Diagnosis

Many patients experience grief after coeliac diagnosis — for favourite foods, for social spontaneity, for the identity of eating freely. This is a recognised psychological process and not pathological. However, a prolonged grief response may impair early GFD adherence.

Acknowledge the loss explicitly, normalise it, and offer peer support through Coeliac UK. A follow-up appointment specifically focused on adjustment is therapeutic and demonstrates patient-centred care.

“It is completely normal to feel a real sense of loss when you receive this kind of diagnosis — it means a significant change to how you live and eat. Have you found it difficult to come to terms with?”

🥗

Food Anxiety and Hypervigilance

Some patients develop excessive anxiety about accidental gluten exposure, becoming unable to eat outside the home, refusing all social invitations involving food, or developing rituals around food preparation that impair quality of life beyond the medical necessity of GFD.

Distinguish necessary vigilance (appropriate for coeliac) from disordered food anxiety (requires psychological support). Gut-directed CBT or anxiety management may be appropriate for patients whose vigilance has become hypervigilant and impairing.

“How are you managing eating out and being in social situations? Some people find the worry about gluten becomes overwhelming — is that something you are experiencing?”

💑

Relationships and Family Life

The GFD affects the whole household. Partners and family members may feel burdened by needing to change cooking habits. Children with coeliac disease affect family meal planning, birthday parties, and school interactions. These relational dynamics can cause friction and resentment if not openly addressed.

Family-level dietetic consultation is highly beneficial. Providing clear written information to share with family members reduces conflict. Peer support groups through Coeliac UK specifically for families are valuable.

“How has the family been getting on with the diet? Is your partner or household on board with the changes, or is that causing any friction? The whole family will benefit from the dietitian’s advice.”

🌎

Cultural and Religious Considerations

Gluten-free modifications to culturally significant foods (bread, pasta, chapattis, injera, tortillas, matzah) require culturally sensitive dietetic guidance. Religious communion wafers contain gluten — gluten-free communion wafers are available through the Catholic Church and most other denominations and should be proactively offered.

Cultural food practices involving wheat (for example in South Asian and Middle Eastern cuisines) require specialist dietetic support to modify safely while preserving cultural identity and connection.

“Are there cultural or religious foods that are particularly important to you that we need to think about? Your dietitian can help you find gluten-free alternatives that still feel meaningful.”

📈

Non-Adherence — Non-Judgmental Assessment

Non-adherence to GFD is common and multifactorial — financial barriers, social pressure, dietary fatigue, and denial of diagnosis all contribute. Patients are often reluctant to disclose non-adherence due to guilt about knowing the cancer implications.

tTG-IgA serology at annual review is an objective, non-judgmental marker of adherence. A raised tTG-IgA on GFD provides an evidence-based opening to explore barriers to adherence without accusation. Frame it as a helpful clinical tool, not a test of honesty.

“The blood test shows us how the gut is responding to the diet — it is a useful way of knowing if there might be some gluten getting through without you necessarily realising it. How has the diet been going from your perspective?”

7H — Follow-up schedule

4–6 weeks — Post-diagnosis, post-GFD start

Review symptom response to GFD (most patients feel significantly better within 4–6 weeks). Check nutritional supplement tolerability. Confirm dietitian referral has been actioned. Answer questions about GFD and cross-contamination. Check cascade testing of first-degree relatives has been initiated. Provide Coeliac UK information if not already done.

GFD symptom checkSupplement tolerability

3 months — First nutritional check

Repeat FBC, ferritin, folate, B12, vitamin D, and tTG-IgA. tTG-IgA begins to fall on strict GFD from 3 months. Nutritional markers should be improving. If tTG-IgA remains high: review GFD adherence with dietitian; consider hidden sources of gluten. Dietitian review at this point is ideal.

Nutritional bloodstTG-IgA trend

6–12 months — Serological normalisation check

tTG-IgA should be normal or undetectable by 6–12 months on strict GFD. If still positive: refer to gastroenterology (refractory coeliac disease) or dietitian review (hidden gluten exposure). Nutritional markers should be fully normal. Vaccination status confirmed and documented. DEXA result reviewed and bone protection plan confirmed.

tTG-IgA normalisationDEXA result review

Annual review — ongoing lifelong

Annual coeliac review: tTG-IgA (adherence marker), FBC, ferritin, folate, B12, vitamin D, LFTs, TSH, calcium. Weight and BMI. Symptom check including new red flags. Non-adherence check (clinical and biochemical). Dietitian contact annually. Vaccination update. Bone health review. DEXA every 3–5 years or as directed by gastroenterology.

Annual bloodsRed flag re-screenVaccination update

Open access — new symptoms at any time

Symptoms returning on strict GFD, unexplained weight loss, night sweats, abdominal pain, new anaemia, or new neurological symptoms in a patient with confirmed coeliac disease require urgent assessment. These may indicate EATL, refractory coeliac disease, or a new complication. Do not attribute all symptoms to non-adherence without investigation.

Urgent — new symptoms on GFD

7I — Monitoring: the GFD response framework

Annual coeliac review checklist

Serology: tTG-IgA (adherence marker — should be negative on strict GFD) · Haematinics: FBC, ferritin, folate, B12 (should normalise at 6–12 months) · Bone: vitamin D, calcium, PTH (supplement as needed; DEXA every 3–5 years) · Metabolic: LFTs (transaminitis should normalise on GFD), TSH, albumin · Weight and symptoms: BMI, new red flags, adherence check · Vaccinations: Review hyposplenism vaccine schedule annually · Dietitian contact: Annual dietetic review recommended by NICE NG20 · Cascade testing: Document FDR testing offered and outcomes

Parameter	Expected response to GFD	If fails to normalise
tTG-IgA	Begins to fall at 3 months; should be negative by 6–12 months	Persistent positivity → hidden gluten (dietitian), refractory coeliac (GI referral)
Haemoglobin / MCV	Anaemia corrects within 3–6 months with GFD + supplementation	Persistent anaemia → investigate for ongoing blood loss, EATL, B12 deficiency
Ferritin	Rises on GFD + oral iron; target >50 μg/L	Persistent low ferritin → consider IV iron infusion; check adherence; rule out additional GI cause
Vitamin D (25-OH-D)	Rises on supplementation; target >50 nmol/L	Persistent deficiency → increase dose; check adherence; check GF formulation of supplement
LFTs / transaminases	Coeliac transaminitis should normalise within 6–12 months on GFD	Persistent raised LFTs → investigate for autoimmune hepatitis, NAFLD, or other liver pathology
Symptoms	GI symptoms resolve within 4–8 weeks; fatigue within 3–6 months	Persistent symptoms on strict GFD → exclude SIBO, lactose intolerance, microscopic colitis, refractory coeliac

Patient context	Monitoring priority	Action if abnormal
Newly diagnosed — first year on GFD	tTG-IgA at 3, 6, 12 months; haematinics at 3 months	Failure to improve → dietitian review; refractory disease consideration
Established coeliac — annual review	tTG-IgA + haematinics + vitamin D + TSH annually	New positive tTG-IgA → explore adherence barriers; dietitian referral
Coeliac in pregnancy	Monthly haematinics; folate 5mg OD throughout; obstetric co-management	Anaemia or poor weight gain → urgent obstetric review; parenteral nutrition consideration
Coeliac with osteoporosis	DEXA at diagnosis; calcium and vitamin D monitored at 6 months; repeat DEXA at 3–5 years	Worsening BMD on GFD + supplements → bisphosphonate; specialist bone clinic referral
Refractory coeliac (symptoms on strict GFD)	tTG-IgA; CT abdomen; gastroenterology urgently; immunoglobulins	RCD type II → urgent gastroenterology; monitor for EATL transformation
Coeliac — suspected non-adherence	tTG-IgA; dietitian review; explore barriers non-judgmentally	Persistent positive tTG-IgA → investigate hidden gluten sources; address psychosocial barriers

7J — Safety-netting: exact phrases + medico-legal rationale

⚠ Three scenario-specific phrases — use these verbatim

Why safety-netting matters beyond clinical care

Advising GFD before biopsy invalidates the diagnostic process — document advice to continue gluten until biopsy explicitly in the clinical notes

Coeliac disease carries a 10× increased risk of EATL in non-adherent patients — annual review and red flag counselling are medico-legally protective

Cascade testing obligations: document that first-degree relatives have been advised of their 10% risk; failure to do so may constitute negligent omission

Hyposplenism vaccination: failure to offer hyposplenism vaccines at diagnosis is a preventable harm; document vaccine status in coeliac register

DEXA scan at diagnosis: failure to arrange bone health assessment at diagnosis is a missed opportunity to prevent fragility fractures

GFD formulation of all medications: prescribing gluten-containing medications to a coeliac patient is a patient safety error; document pharmacist involvement

4–6 weeksPost-diagnosis: GFD start, supplement tolerability, dietitian referral

3 monthsHaematinics, tTG-IgA, vitamin D, DEXA result review

6–12 monthstTG-IgA normalisation, full nutritional panel, vaccination check

AnnualFull coeliac review per NICE NG20; red flag re-screen; dietitian contact

AnytimeNew symptoms on GFD, B-symptoms, abdominal mass → urgent

🎓 SCA Checkpoint — Step 7 (Final)TasksRelating to OthersGlobal Skills

Closing the consultation

“Before I let you go — is there anything I have said today that you would like me to explain again, or anything you are still worried about?”

“To summarise what we have agreed: blood tests today, a referral to the hospital for the biopsy, a referral to our dietitian, and most importantly — please keep eating gluten until after the biopsy.”

“Your close family members have about a 1 in 10 chance of having this condition — please ask them to come in for a blood test, especially if they have any similar symptoms.”

“Come back immediately if you lose weight, develop night sweats, or notice a new lump — even if you are on the diet. We need to investigate that quickly.”

Deductions — closing

Not summarising the plan including the key instruction to continue eating gluten
No closing question asking whether the patient has any remaining concerns
Failing to mention cascade testing for first-degree relatives
Vague safety-netting without naming B-symptom red flags
Not explaining the dietitian’s role in the management plan

🔴 Red — failing

GFD started before biopsy · No dietitian referral · Cascade testing omitted · No safety-netting about EATL red flags

🟠 Amber — borderline

Biopsy referral made but gluten continuation not explicitly stated · Dietitian mentioned but not actioned · Cascade testing mentioned without plan

🟢 Green — passing

Continue gluten explicitly stated · GI + dietitian referrals explained · Cascade family testing plan discussed · EATL red flags safety-netted · Annual review explained · Closing question asked

“I have been feeling awful for about two years now — stomach problems, exhaustion, losing weight. I have been doing my own research and I really think I might have coeliac disease like my mum did. I have actually been avoiding gluten for the past four months and I do feel a bit better on it.”

Who you are

Amara, 34-year-old secondary school science teacher. You have had chronic diarrhoea, abdominal bloating, fatigue, and intermittent mouth ulcers for 2 years. You have lost 4 kg over the past year without trying. You were previously told you had IBS and put on a low-FODMAP diet. Four months ago you started avoiding gluten after reading about coeliac disease online and feel somewhat better. Your mother had coeliac disease, diagnosed 10 years ago.

Hidden agenda and ICE

You are worried about cancer — you know coeliac disease untreated increases the risk of intestinal lymphoma and this frightens you. You want confirmation that you have coeliac disease and you want to start the official gluten-free diet immediately. You are frustrated that you have felt unwell for 2 years and feel your IBS diagnosis was wrong. You are worried about the cost of gluten-free products.

Key information if asked directly

Stools: loose, often pale and difficult to flush, 3–4 times/day
Weight loss: 4 kg over 12 months without dieting
Mouth ulcers: recurrent, 3–4 per year, lasting 1–2 weeks
No rectal bleeding — answer “no” clearly
No night sweats — answer “no” clearly
Currently eating gluten-free for 4 months (critical information)
Joint pains: mild intermittent joint pain, especially knees (mention if asked)
Family history: mother has coeliac disease; one sister has no known diagnosis

Bonus details and resolution

Diet currently: mostly naturally GF foods (rice, potatoes) plus some GF bread; no deliberate gluten for 4 months
Anxiety about cost: GF products are expensive; mention this if finances are raised
Work impact: fatigue means you have been struggling to teach full days
Resolution: you will accept the plan IF the clinician: (1) explains why you need to continue eating gluten until the biopsy; (2) acknowledges the difficulty of this; (3) confirms the referral pathway; (4) addresses your family’s risk; (5) mentions the dietitian
Challenge phrase: “But I feel so much better on the diet — can’t we just confirm I have it based on the blood test and start the diet officially now?”

“I know the diet works for me — I feel better. Why do I need a biopsy? Can’t you just treat me as coeliac and let me start the diet properly now? I have read that the blood test is very accurate.”

Resolution: Accept the plan if the clinician explains that: (1) the biopsy is needed for formal confirmation which unlocks dietitian access, annual monitoring, and in some areas prescription GF foods; (2) the blood test on a GFD will be unreliable; (3) the biopsy referral will be prioritised; (4) you can start the GFD officially immediately after the biopsy. Remain resistant if the clinician just tells you to wait without explaining why gluten must be continued.

🏥

Clinic Quick Reference

Coeliac Disease — Clinical Decision Framework

NICE NG20 (2015) · CKS 2022 · New Presentation, Follow-Up, and Complications

▼expand

🚨 1 — Investigation Algorithm by Gluten Intake Status

Suspected coeliac disease — ALWAYS ask about current gluten intake FIRST

↓

🟢 Currently eating gluten daily

Order tTG-IgA + total IgA
Order full nutritional screen (FBC, ferritin, folate, B12, vitamin D, LFTs, TSH)
If tTG-IgA positive → GI referral for duodenal biopsy
Advise patient: continue eating gluten until biopsy date
Do NOT start GFD until biopsy confirmed

Standard pathway — serology then biopsy

🟠 Already on gluten-free diet

Do NOT order tTG-IgA — result unreliable on GFD
Order HLA-DQ2/DQ8 genetic test first
If HLA negative: coeliac effectively excluded
If HLA positive: offer 6-week gluten challenge (10g/day) then tTG-IgA + biopsy
If patient refuses challenge: direct biopsy knowing histology may appear normal

HLA genotype first; gluten challenge if HLA positive

🔴 Suspected EATL complication

B-symptoms (weight loss, night sweats, fever) in coeliac on GFD
Abdominal mass or lymphadenopathy
Refractory symptoms persisting >12 months on strict GFD
Urgent CT chest/abdomen/pelvis
2WW haematology referral

Do not delay — EATL is a lymphoma emergency

🔬 2 — Key Numbers

1 in 100

UK prevalence; 75% undiagnosed

10%

First-degree relative risk — cascade test all

6 weeks

Minimum gluten before serology (10g/day)

Marsh III

Villous atrophy — confirms diagnosis on biopsy

3–6 months

tTG-IgA normalises on strict GFD

10×

EATL risk (uncontrolled vs adherent)

5–10%

T1DM patients with coeliac (screen all)

10–15%

Down’s syndrome prevalence

30–40%

Coeliac patients with hyposplenism

£800–1,500

Extra annual cost of GFD (UK)

99%

NPV of negative HLA-DQ2 & DQ8 (excludes coeliac)

3–5 yrs

DEXA repeat interval on established GFD

💊 3 — Annual Review Checklist (NICE NG20)

Blood tests (annual)

tTG-IgA (GFD adherence marker)
FBC, ferritin, folate, serum B12
Vitamin D (25-OH-D) and corrected calcium
LFTs and albumin (transaminitis should normalise)
TSH (associated autoimmune thyroid disease)
If tTG-IgA positive on GFD → dietitian review + GI referral if persistent

Clinical review (annual)

Symptom check — resolution on GFD?
Weight and BMI
Red flag re-screen (weight loss, night sweats, new lump)
Adherence assessment (non-judgmental + tTG-IgA)
Vaccination status (pneumococcal, meningococcal, Hib, flu)
DEXA: at diagnosis; repeat every 3–5 years
Dietitian contact: annual review recommended
Cascade testing: document FDR testing offered & outcome

🛢 4 — Safety Netting & Follow-Up

Follow-up timeline

4–6 weeks: Post-diagnosis: GFD start, supplement tolerability, dietitian

3 months: Haematinics, tTG-IgA trending down, vitamin D

6–12 months: tTG-IgA normalisation; full nutritional panel; DEXA review

Annual (lifelong): Full coeliac review per NICE NG20

Anytime: New symptoms, B-symptoms, mass on GFD → urgent

📌 Critical: always check gluten intake before ordering tTG-IgA. Result is unreliable on GFD.

🚨 5 — Critical Rules & Red Flags

🔴 Never do this: Order tTG-IgA while patient is on GFD · Start GFD before biopsy confirmation · Prescribe gluten-containing medications · Diagnose DH without perilesional skin biopsy · Give folic acid without checking B12 first · Assume non-adherence without investigating EATL in refractory cases

🛡️ Safeguarding: Children with coeliac: IHP required for school · GFD sabotage by partner is IPV · Non-adherence causing harm in children may be medical neglect · Eating disorder behaviours elevated in coeliac (screen with SCOFF) · Financial barriers to GFD must be addressed proactively

✅ Always at diagnosis: tTG-IgA + total IgA on gluten diet · Full haematinics + vitamin D + TSH · DEXA scan · Vaccinations (pneumococcal, meningococcal, Hib, influenza) · Dietitian referral · Cascade first-degree relatives · Coeliac UK membership

⚠ Screen these groups (NICE NG20): Type 1 diabetes · Autoimmune thyroid disease · Down’s syndrome · Turner’s syndrome · First-degree relatives of coeliac patients · Unexplained iron deficiency anaemia · Recurrent miscarriage · Dermatitis herpetiformis

🎓

SCA Exam Quick Reference

SCA Consultation Blueprint

Tasks · Relating to Others · Global Skills · RAG guide

▼expand

🕐 12-Minute Consultation Flow — with Domain Scoring

0–2 min

Open + Reference Notes + Establish Gluten Intake

“I can see from your notes that you have been having bowel problems and were on a FODMAP diet. Tell me what has been going on in your own words — and I need to ask one important question first: are you currently eating gluten?”

Establishing current gluten intake within the first 2 minutes is the highest-priority clinical action — it determines the entire investigation plan. Do this before any other targeted questions.

Relating to OthersTasks

✗ Not asking about gluten intake · Ordering tTG-IgA without checking GFD status · Re-asking documented information

2–5 min

Symptom History + Associated Conditions + Red Flags

“Tell me about the stool changes — are they pale or difficult to flush? Any mouth ulcers, joint pains, or skin rashes? Have you lost any weight without trying?”

Ask specifically about: steatorrhoea (pale/bulky stools), extraintestinal features (mouth ulcers, DH rash, neurological), weight loss (red flag), family history, and associated conditions (T1DM, thyroid).

Tasks

✗ Missing weight loss as urgent · Not asking about family history · Not asking about DH rash · Not exploring associated conditions

5–7 min

ICE + Examination + Psychosocial

“Are you worried this could be something serious — like cancer? And how has the diet been affecting your daily life and work?”

Examine: weight, pallor, abdominal palpation, skin (DH), lymph nodes. ICE: explore cancer concern specifically; acknowledge GFD cost and social burden.

Relating to OthersTasks

✗ Not examining lymph nodes · Not exploring cancer concern · Missing DH on skin exam

7–10 min

Diagnosis + Investigation Plan + Why Gluten Must Continue

“Based on your blood test, I think you do have coeliac disease. It is an autoimmune condition, not a food allergy. Before you start the diet officially, we need a biopsy to confirm — and you need to keep eating gluten until then.”

Explain mechanism (autoimmune, villi, malabsorption). Order investigations. Explain why gluten must continue until biopsy clearly and with empathy.

TasksRelating to Others

✗ Starting GFD before biopsy · Calling it a food allergy · Not explaining why gluten must continue

10–12 min

Management Plan + Cascade Testing + Safety-Net + Close

“To summarise: keep eating gluten until the biopsy, blood tests today, dietitian referral, family members should be tested — and come back immediately if you lose weight or develop night sweats on the diet.”

Cover: dietitian referral, DEXA scan, vaccinations, cascade testing, Coeliac UK. Safety-net: EATL red flags. Closing question: “Is there anything else?”

TasksRelating to OthersGlobal Skills

✗ No closing question · Cascade testing omitted · EATL red flags not safety-netted · No dietitian mention

🔴🟠🟢 RAG Scoring — All 3 Domains

Tasks Domain

🟢

Gluten intake first · tTG-IgA + total IgA + haematinics · Continue gluten stated · Autoimmune mechanism · Cascade testing · DEXA · Vaccinations · EATL safety-net

🟠

Gluten checked but plan not adjusted · Total IgA omitted · Continue gluten mentioned but not explained · Cascade mentioned without plan · DEXA omitted

🔴

tTG-IgA on GFD without check · GFD before biopsy · Coeliac called food allergy · Cascade not discussed · EATL safety-netting absent

Relating to Others

🟢

Open question · Cancer concern named · GFD cost acknowledged · Grief response normalised · Plan negotiated · Closing question asked

🟠

ICE partially explored · GFD burden not acknowledged · Plan imposed rather than negotiated · Closing question absent

🔴

No open question · ICE not explored · Cancer fear not addressed · GFD cost ignored · Plan not explained

Global Skills

🟢

Systematic · Gluten intake question early · Plain language throughout · Summary including continue-gluten instruction · Patient agenda first

🟠

Structure present but gluten check delayed · Some jargon · Summary incomplete

🔴

Gluten check absent · No structure · Medical jargon uncorrected · No summary

💬 Key Phrases — ICE, Diagnosis & Plan

First question — gluten intake

“Are you currently eating gluten — bread, pasta, cereals? This is really important before I order any tests.”

Concerns — name cancer fear

“Are you worried that this could be something serious — like cancer or lymphoma? I want to address that directly.”

Validate — the desire to start GFD

“I completely understand why you want to start the diet now — you feel better on it and that makes perfect sense. Let me explain why we need one more step first.”

Explain — why biopsy before GFD

“The biopsy looks for changes in the gut that only appear when you are eating gluten. If you stop now, the gut may start to heal and the biopsy could look normal — meaning we could miss the diagnosis.”

Explain — autoimmune, not allergy

“Coeliac disease is an autoimmune condition — your immune system attacks your gut in response to gluten. It is not like a food allergy. Even tiny amounts cause damage, even without symptoms.”

Close — cascade + safety-net

“Your close family have a 1 in 10 chance of this — please ask them to get tested. And come back immediately if you develop night sweats, lose weight, or notice a new lump on the diet.”

🚫 9 Danger Zones — Instant Deductions

✗

Ordering tTG-IgA without checking gluten intake→ ALWAYS ask: “Are you currently eating gluten?” before any investigation

✗

Advising GFD before biopsy confirmation→ Continue gluten until biopsy — GFD normalises histology and invalidates diagnosis

✗

Calling coeliac a “food allergy”→ It is an autoimmune condition; this distinction changes management fundamentally

✗

Omitting total serum IgA alongside tTG-IgA→ IgA deficiency causes false-negative tTG-IgA; total IgA must always be checked

✗

Prescribing folic acid without checking B12 first→ Masked B12 deficiency can cause subacute combined degeneration of the spinal cord

✗

Not checking medications for gluten content→ Tablet excipients may contain wheat starch; verify all medications prescribed to coeliac patients

✗

Not offering cascade testing to first-degree relatives→ 10% FDR risk; all must be offered tTG-IgA; document offer and outcome

✗

Attributing symptoms on GFD to non-adherence without investigation→ Consider EATL, refractory coeliac, SIBO, or lactose intolerance before assuming non-adherence

✗

Missing hyposplenism vaccination need at diagnosis→ Pneumococcal, meningococcal, Hib, annual influenza — offer at every new coeliac diagnosis

💊 Key Clinical Rules Quick-Pick

Eating gluten

→

tTG-IgA + total IgA

+ haematinics screen

On GFD already

→

HLA-DQ2/DQ8 first

NOT tTG-IgA

Positive tTG-IgA

→

GI referral (biopsy)

Continue gluten until then

Iron deficiency

→

Ferrous fumarate 210mg TDS

Verify GF formulation

Low vitamin D

→

Colecalciferol 800–1000 IU OD

Verify GF; DEXA scan

Osteoporosis on DEXA

→

Alendronate 70mg weekly

After Ca/VitD optimised

All new coeliacs

→

Pneumo + Meningo + Hib vaccines

Hyposplenism risk

🔴 Never: tTG-IgA on GFD · GFD before biopsy · Folic acid without checking B12 · Gluten-containing medications · DH biopsy from lesion (not perilesional)

Coeliac Disease · GP Clinical Reasoning Framework v2 · NICE NG20 (2015) · NICE CKS Coeliac Disease (2022) · NICE NG12 Colorectal Cancer Referral (2015) · ESPGHAN Guidelines 2020 · BSG Coeliac Guidelines 2014

v2: Clinical stem · Open Q first · Gluten intake as first clinical action · GFD pathway by intake status · Marsh classification · DH recognition · Hyposplenism + vaccination protocol · Cascade testing obligations · Safeguarding (GFD sabotage, children’s IHP) · SCA RAG checkpoints · Scorecard · Dual summaries

Teaching clinicians why each step matters — not just what to do · Always consult current BNF/SPC before prescribing · Verify GF formulation of ALL medications and supplements prescribed to coeliac patients · Clinical judgement takes precedence over any framework

Coeliac Disease

Red Flags — act before continuing history

Safeguarding Considerations — Consider in Every Consultation

🏠 Domestic Abuse / Intimate Partner Violence

👴 Older Adults / Malnutrition Risk

👦 Children — Faltering Growth and Development

💊 Non-Adherence and Self-Harm via Diet

🥗 Anxiety about Food and Social Eating

💹 Financial Stress from GFD Cost

😢 Grief and Adjustment to Diagnosis

👤 Identity and Sense of Difference

🎯 Guilt Around Accidental Exposure or Non-Adherence

👥 Impact on Family Dynamics

999 or Same-Day Hospital

Urgent Referral / Investigation

Manage in Primary Care / Routine Referral

Coeliac Disease (classical)

Dermatitis Herpetiformis (DH)

Potential / Latent Coeliac

IBS (commonly confused)

Non-Coeliac Gluten Sensitivity (NCGS)

Crohn’s Disease of the Small Bowel

Tropical Sprue / Bacterial Overgrowth

Refractory Coeliac Disease (RCD)

Enteropathy-Associated T-Cell Lymphoma (EATL)

Hyposplenism and Splenic Atrophy

Validate — acknowledge the desire to start the diet immediately

Explain — why gluten must continue until biopsy

Negotiate — offer a concrete plan with a fixed endpoint

Diagnostic pathway depends on current gluten intake — check first

Financial Cost of GFD

Grief Response to Diagnosis

Food Anxiety and Hypervigilance

Relationships and Family Life

Cultural and Religious Considerations

Non-Adherence — Non-Judgmental Assessment

4–6 weeks — Post-diagnosis, post-GFD start

3 months — First nutritional check

6–12 months — Serological normalisation check

Annual review — ongoing lifelong

Open access — new symptoms at any time

Annual coeliac review checklist

⚠ Three scenario-specific phrases — use these verbatim

Why safety-netting matters beyond clinical care

🎭 Patient actor brief — click to practise

Who you are

Hidden agenda and ICE

Key information if asked directly

Bonus details and resolution