Guidance for follow up
It is important that patients have ongoing review following a diagnosis of coeliac disease.
NICE provides recommendations for monitoring people with coeliac disease. During the review:
- measure weight and BMI - is the patient's weight stable/decreasing/increasing and is the BMI within the healthy range? Consider thyroid function tests if a patient has experienced unexplained weight gain.
- review symptoms - are their symptoms resolved? if symptoms are unresolved it could be due to a number of factors, see the information below for things to check
- make a decision on the need to complete a full diet assessment and adherence to the gluten-free diet
- make a decision on the need for referral to specialist dietitian for nutritional advice
The NICE quality standard on coeliac disease also highlights that patients with coeliac disease should be offered an annual review. The quality standard makes reference to the fact that patients living in socioeconomically deprived areas are less likely to attend an annual review and that healthcare professionals should therefore agree a local approach to encourage as many people as possible to attend.
Review appointment checklist
When patients attend for their follow up appointment they often return with lots of questions about their new diet and lifestyle. In addition to the points raised above, here is a checklist on further topics to cover at a patients' review appointment:
Here is a checklist on topics to cover at a patients' review appointment:
- is the patient following a strict gluten-free diet?
- is the patient receiving food on prescription?
- if antibody levels are available, have these improved since diagnosis - note that levels tend to drop steeply initially but may not reach normal levels for several months. NICE recommends that serological testing should not be used alone to determine whether gluten has been excluded from person’s diet
- iron levels - is the patient anaemic? If so, are levels increasing and are supplements required?
- is the patient achieving an adequate calcium intake? If not, is there a need for calcium supplementation? Is a dual energy X-ray absorptiometry (DEXA) scan necessary? The need for a DEXA scan should be assessed in line with the NICE guideline on osteoporosis: assessing the risk of fragility fracture or active treatment on bone disease. If required, check the patient has been referred for one. If results are available tailor dietary advice as necessary
- has the patient joined Coeliac UK? Are they updating their Food and Drink Guide on a monthly basis?
- does the patient have a good understanding of food labelling laws?
The majority of individuals with coeliac disease report a rapid clinical improvement after starting a gluten-free diet and symptoms usually improve within a few weeks. If symptoms have not improved on a gluten-free diet, there are a number of things to consider as possible reasons:
- adherence – perhaps the diet isn’t being strictly followed as this can vary from 42 - 91%.
- inadvertent ingestion of gluten – it is important that patients know about how to make the right food choices when eating in and out of the home. Contamination during preparation of food at home can also be a problem for people with coeliac disease. Read more about selecting safe foods and reading labels
- oats – a minority of people react to avenin, the protein in oats. Read about oats and the gluten free diet and find more information about oats for your patients here.
NICE recommends to consider referring people with coeliac disease for intestinal biopsy if continued exposure to gluten has been excluded and;
- serological titres are persistently high and show little or no change after 12 months or
- they have persistent symptoms, including diarrhoea, abdominal pain, weight loss, fatigue or unexplained anaemia.
NICE also recommends to refer the person to a GP or consultant if concerns are raised in the annual review. The GP or consultant should assess all of the following;
- the need for a DEXA scan (in line with the NICE guideline on osteoporosis: assessing the risk of fragility fracture or active treatment on bone disease)
- the need for specific blood tests-the risk of long term complications and comorbidities
- the need for specialist referral.
Further information on non-responsive and refractory coeliac disease is available on our website.