Know to Prevail

Screenings by age and gender

Screenings if you have celiac disease

The ACG describes celiac disease as a permanent immune-mediated response to gluten in wheat, barley and rye, with a wide range of effects that resemble a disorder of many body systems rather than an isolated intestinal disease, and says it requires lifelong medical follow-up. (ACG, 2023) Testing for celiac disease is on celiac disease screening. This page covers the checks for people who already have it, not diet, supplements, medicines or treatment.

A review once a year

NICE says to offer an annual review to people with coeliac disease, and that during the review the clinician should measure weight and height and review symptoms. (NICE NG20) The NHS says a GP will offer you an annual review during which your height and weight will be measured and your symptoms reviewed. (NHS treatment) If concerns are raised in the annual review, NICE says the GP or consultant should assess all of the following: (NICE NG20)

  • the need for a DEXA (bone density) scan
  • the need for specific blood tests
  • the risk of long-term complications and comorbidities
  • the need for specialist referral

The BSG says annual follow-ups should be initiated once the disease is stable, that long-term follow-up can be in secondary care clinics or in primary care as long as the expertise is available, and that the need for long-term follow-up is controversial. (BSG, 2014) See questions to ask your doctor.

Blood tests at follow-up

The BSG says patients should have annual haematological and biochemical profiles, and that at the annual follow-up the physician should check: (BSG, 2014)

  • small intestinal absorption: full blood count, ferritin, serum folate, vitamin B12, calcium and alkaline phosphatase
  • associated autoimmune conditions: thyroid tests and serum glucose
  • liver disease: aspartate aminotransferase and alanine aminotransferase (AST and ALT)
  • the celiac antibody tests (anti-TG2 or EMA/DGP)

The BSG adds that the antibody tests cannot substitute for a structured dietary interview, (BSG, 2014) and NICE says not to use serological testing alone to determine whether gluten has been excluded from the diet. (NICE NG20) MedlinePlus lists a complete blood count, iron, ferritin, folate and vitamin B12 levels, a comprehensive metabolic panel, cholesterol, prothrombin time and bone density among the tests that may be performed, and lists low blood count (anemia) among the related conditions. (MedlinePlus) See complete blood count results and iron and ferritin test results.

Thyroid and liver checks

NICE offers celiac testing to people with autoimmune thyroid disease or type 1 diabetes at diagnosis, and considers it in people with persistently raised liver enzymes with unknown cause, (NICE NG20) and the BSG lists thyroid and glucose tests and liver enzymes in its annual follow-up checks. (BSG, 2014) MedlinePlus lists autoimmune disorders and liver disease among the conditions people with celiac disease are at risk for when diagnosis is delayed. (MedlinePlus) See who needs a thyroid test, liver function test results and screenings if you have diabetes.

Bone density

The BSG says the risk of osteoporosis and bone fracture is increased with celiac disease, and recommends that bone density should be measured after 1 year of diet in patients who have additional risk factors for osteoporosis or if over the age of 55 years. It says repeat bone density tests, generally after an interval of 2 years or more, should be considered in patients who had low bone density on the first measurement, or who have evidence of ongoing villous atrophy or poor dietary adherence. (BSG, 2014) NICE places the DEXA scan among the checks to assess when concerns are raised at the annual review. (NICE NG20) The NHS and MedlinePlus both list osteoporosis among the complications. (NHS complications) (MedlinePlus) See how often to have a bone density test.

Follow-up biopsy

NICE says to consider referral for an endoscopic intestinal biopsy if continued exposure to gluten has been excluded and either antibody levels are persistently high and show little or no change after 12 months, or there are persistent symptoms, including diarrhoea, abdominal pain, weight loss, fatigue or unexplained anaemia. (NICE NG20) The BSG says follow-up biopsies may be considered and are not mandatory if the patient has no symptoms on a gluten-free diet and no other features that suggest an increased risk of complications. (BSG, 2014)

Testing close relatives

NICE says to offer serological testing for coeliac disease to first-degree relatives of people with coeliac disease. (NICE NG20) The BSG says around 10% of first-degree relatives may be affected, and recommends that symptomatic first-degree relatives should undergo testing. (BSG, 2014) How the antibody test works, and why gluten stays in the diet before testing, are on celiac disease screening.

Anxiety and depression

NICE says to be aware that people with coeliac disease may experience anxiety and depression. (NICE NG20) See depression screening: what to expect and anxiety screening (GAD-7).

Usual screening on schedule

The NHS says someone with coeliac disease has a slightly increased risk of developing certain cancers, including small bowel cancer, small bowel lymphoma and Hodgkin lymphoma, and that most people with coeliac disease will not develop any of these. (NHS complications) The sources on this page do not set a different schedule for routine cancer or other screening in people with celiac disease. (NICE NG20) (BSG, 2014) See cancer screenings by age, preventive screenings for older adults and screenings by age and gender.

When to contact a provider

MedlinePlus, celiac disease, when to contact a medical professional: (MedlinePlus)

Contact your provider if you have symptoms of celiac disease.

Where they differ:

  • What the yearly review includes. NICE lists weight, height and symptoms, with blood tests and a DEXA scan assessed if concerns are raised; (NICE NG20) the BSG lists yearly blood tests for absorption, thyroid, glucose, liver enzymes and celiac antibodies. (BSG, 2014)
  • When bone density is measured. NICE ties the DEXA scan to concerns raised at the annual review; (NICE NG20) the BSG measures it after 1 year in people with added risk factors or over age 55. (BSG, 2014)
  • Which relatives are tested. NICE offers testing to all first-degree relatives; (NICE NG20) the BSG recommends testing first-degree relatives who have symptoms. (BSG, 2014)

Your doctor decides what your result means for you.

Questions people ask

How often should someone with celiac disease be reviewed?

NICE says to offer an annual review to people with coeliac disease, including measuring weight and height and reviewing symptoms. The BSG says annual follow-ups should be initiated once the disease is stable, and the ACG says celiac disease requires lifelong medical follow-up. (NICE NG20) (BSG, 2014) (ACG, 2023)

Will I have a bone density scan?

NICE says that if concerns are raised in the annual review, the GP or consultant should assess the need for a DEXA scan. The BSG says bone density should be measured after 1 year of diet in patients who have additional risk factors for osteoporosis or if over the age of 55 years. (NICE NG20) (BSG, 2014)

Should my family be tested for celiac disease?

NICE says to offer serological testing to first-degree relatives of people with coeliac disease. The BSG says around 10% of first-degree relatives may be affected and that symptomatic first-degree relatives should undergo testing. How the test works is on our celiac disease screening page. (NICE NG20) (BSG, 2014)

Does celiac disease change the usual cancer screening schedule?

The NHS says someone with coeliac disease has a slightly increased risk of certain cancers, but that most people with coeliac disease will not develop any of these. The sources on this page do not set a different schedule for routine cancer screening. (NHS complications) (NICE NG20)

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