Jonathon completed undergraduate and postgraduate paediatric gastroenterology training in the UK before undertaking a six-month Fellow post in Starship Children’s Hospital in 2007. He returned to the UK to work as a consultant post in the Royal Hospital for Sick Children, Glasgow between 2008 and 2011 before the lure of the Southern hemisphere proved too strong and he returned to Starship as a Consultant Paediatric Gastroenterologist/Hepatologist. His professional interests include coeliac disease, inflammatory bowel disease, and cystic fibrosis liver disease.

Jonathon presented at the Coeliac NZ Conference on the topic of Coeliac Disease and its impact on you and your family. The following questions arose following his presentation.

Should children/adolescents with coeliac disease get a full blood workup every 12 months or more frequently?

I do not feel that a “one-size fits all” approach is appropriate for children. Coeliac serology should be monitored six monthly until it has normalised. Any nutritional deficiencies (eg iron deficiency) should be followed up on blood testing. There is little place for annual blood tests in the well child with coeliac disease. However, less frequent screening bloods (eg 2 yearly) to look at coeliac serology (mainly to ensure no issues with managing the diet) is reasonable, along with other tests as clinically indicated (eg blood count, thyroid function). Some studies suggest a greater risk of loss of immunity to Hep B, so serology should be checked intermittently.

For Audilts recommendations vary and (given that I am not an adult gastroenterologist), my thoughts are based on reading the medical literature rather than experience, but 1-2 yearly blood testing for coeliac serology, blood count, iron studies, B12, folate, Vit D, calcium, liver function and Thyroid function seems to be reasonable.

How often should a child be followed up after diagnosis?

Annual GP review (mainly to monitor growth, weight gain, and general well-being).

Dietetic review after diagnosis and then prior to significant life events (starting school, early adolescence, early adulthood) or if there is concern re managing diet.

Can coeliac disease affect fertility in men with coeliac disease?

There is far less literature on fertility issues in men with coeliac disease than in women. This would suggest that subfertility is probably a less significant problem for men with coeliac disease than for women. There is some evidence that untreated coeliac disease may be associated with lower sperm count, problems with sperm motility, low sex drive and reduced sexual satisfaction. However, these changes seem to reverse on a gluten-free diet. Other studies suggest that there is no significant link between male CD and fertility rates.

A child that developed symptoms shortly after introducing gluten. The mother is coeliac. The child is kept on a gluten-free diet. Is a biopsy necessary?

I would be loath to assume that the symptoms indicate coeliac disease without further testing. The development of symptoms may be due to other reasons than coeliac disease (non-coeliac gluten intolerance/wheat allergy/anxiety/coincidence…) and making a definite diagnosis of coeliac disease remains important before deciding upon a lifelong gluten-free diet. In the first instance (and particularly if there is anxiety or reluctance about introduction of gluten), genetic testing for HLA DQ2/8 may be helpful. If this test is negative, the child does NOT have – and will not develop - coeliac disease. If HLA DQ2/8 gene positive, the child is in a genetically susceptible group. However, around 30% of individuals carry a coeliac susceptibility gene. Only around 1% of the general population develop coeliac disease and only about 10% of first degree relatives develop coeliac disease. So the next thing to consider is a formal gluten challenge (a time-limited trial of gluten introduction in the diet) followed by coeliac blood testing. This should be discussed with your GP. If the coeliac blood tests are positive, a biopsy may be required, though we are able to make a diagnosis of coeliac disease from blood tests in 60-70% of children now – though ONLY if they are eating gluten in their diet.

When should children of a coeliac mother be retested if initial tests are negative?

I would test all children over three years of age at the time of the mother’s diagnosis if they are eating a gluten-containing diet.

Routine repeat testing for all children is probably not required but should be considered if symptoms, growth issues etc arise.

Should all women with coeliac disease be taking 5mg folic acid daily in case they fall pregnant?

Although this is not my area of practice, I would suggest:

• If there is evidence of folate deficiency on testing, then this should be treated with supplementation.
• At the point of planning pregnancy, folic acid supplementation should be considered.
• A “just in case” approach is probably not warranted for every woman of child-bearing age.

A child that never tried gluten due to a strong coeliac presence in the family. Currently 5 years old. How can gluten safety be introduced at this stage?

Again, HLA testing may be considered as a first step. If negative for HLA DQ2/8, there should be no issue with gluten introduction. If positive, there is a chance (approximately 10%) that they will develop coeliac. So I would still recommend a trial of introduction with a plan to check coeliac blood tests after at least 1 month (ideally 3-6 months) – particularly if symptoms develop.

If you were unable to attend the Coeliac NZ Conference and would like to access the video recordings of the presentations these can be purchased via the website for $40 (incl gst). See here for details.