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Medical questions for GPs to Paediatric Specialists

The below questions and answers relate to paediatric patients, who have been diagnosed through Starship Hospital in Auckland. They are written by Dr Simon Chin, (MBChB, DCH, FRACP), Paediatric Gastroenterologist/Hepatologist at Starship Hospital, Auckland.

Starship Hospital Patient FAQs

In general, no. The paediatric gastroenterologists can answer questions from GPs via the e-referrals request for information form. If there is an urgent medical problem, please phone the general paediatric medicine registrar on call at your DHB.

Please note that most patients with suspected coeliac disease can be referred by GPs or general paediatriciansdirectly for endoscopy, and do not require urgent admission. Occasionally, some patients, especially those of toddler age, can present with significant malnutrition (weight loss, abdominal distension, steatorrhoea). These should be discussed with the paediatric gastroenterology service, so that a small bowel biopsy can be performed in a timely fashion.

The menu also helps if you need to take into consideration a nut free diet by coding dishes nut free (NF). Some recipes can also be adapted to be NF.

It is suggested that there should be the initial consultation with you, the GP, once the diagnosis is made and the appropriate referrals especially to the dietitians and to Coeliac New Zealand arranged. Then, it is suggested you see them again about 3 months later to ensure that the patient is going well with the gluten free diet and symptoms improving.

In general, once a gluten free diet is started, symptomatic improvement occurs within the first week.

Thereafter, they could be seen yearly, unless symptoms persist or recur. Repeat testing with coeliac serology should be arranged at the first yearly visit. It can take up to 12-18 months for coeliac serology results to completely return to normal. A further biopsy is not needed.
Patients who are iron deficient may need iron supplementation and repeat iron studies done earlier if indicated.

Some patients have a clinical history very suggestive or concerning for coeliac disease but the coeliac serology is negative or marginal . The concern could be because there is a strong family history of coeliac disease, and having done HLA DQ2/8 testing, it comes back positive (indicating the patient is at risk). There may be signs of iron deficiency or growth faltering. These cases should be discussed or referred through to the general paediatric service or paediatric gastroenterology service depending on the patient’s location.

Some patients may have been placed on a gluten free diet empirically, and symptoms improve as a result. This scenario is discussed elsewhere, but it is recommended that these patients undergo a gluten challenge. Ensure that they have HLA DQ2/8 testing to ascertain that they are risk first.

With those patients who have been already diagnosed with coeliac disease, some may continue to have ongoing symptoms. There should be an initial

re-referral to a dietitian to ensure that the patient is strictly gluten free. Sometimes there is a temporary lactose intolerance, and patients might benefit from being also lactose free for a few months after the initial diagnosis. If there continue to be persistent symptoms, these patients may need to be discussed with the general paediatric service or paediatric gastroenterology service depending on the patient’s location.

Those patients diagnosed with coeliac disease, but who have other complex medical problems, may need to be followed by the respective paediatric specialty services, not necessarily by the paediatric gastroenterology service.

There are circumstances when perhaps the parents of your patient have already empirically placed their child gluten free without having a small bowel biopsy performed and have found an improvement in their child’s symptoms. This could be due to their child genuinely having coeliac disease. But other possibilities exist, such as wheat intolerance, a problem with FODMAP foods (which commonly have gluten in them). They may have an irritable bowel type syndrome.It could also be co-incidental or there could be a placebo effect.

Normally we would recommend a gluten challenge to definitively diagnose coeliac disease. We would also do HLA DQ2 and 8 testing to determine if they are at genetic risk for coeliac disease, because if they lack the DQ 2 or 8 alleles, then it becomes highly unlikely that they have coeliac disease or will develop it. The DQ2 and 8 testing can be done even if the patient is gluten free. Doing coeliac serology (tTG-IgA or DGP)while they have been off gluten is not useful, unless this has happened within the past few weeks. The planning of a gluten challenge needs to be done in conjunction with discussing it with the paediatric gastroenterology service, so that a date for doing the small bowel biopsy can be tentatively arranged, in order to minimize the duration of gluten exposure.

If the patient shows a positive DQ2 or 8 allele, then they should undergo a gluten challenge. The duration of the challenge varies, but we would generally recommend (in children) 1-3 slices of bread/day or the equivalent, depending on their age, for at least 4 weeks. Sometimes the return of symptoms can be very rapid, but sometimes it can be delayed, and so you would need at least 4 weeks of symptoms before considering a biopsy. Some children are not able to continue with the challenge because their symptoms become too severe, and the challenge has to be stopped. These patients may need to be discussed with the Starship Gastroenterology Service.

For the Auckland DHBs, GPs will have direct access to refer to DHB-funded dietitians. For patients from other DHBs please consult your local DHBs paediatric medicine website (usually Healthpoint) for advice. Consider if the matter might need a public health nurse or a social worker.

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