Paediatric coeliac disease presenting with rapid weight & appetite loss requiring NGT
Author: Lauren McVeigh, Senior Paediatric Dietitian, Bristol Children’s Hospital UK.
Sophie initially presented to the paediatric emergency department aged 2 years 3 months with extreme lethargy, poor oral intake and weight loss. Parents reported she had not been well for 5 weeks, initially with diarrhoea for 2 weeks, vomiting for a week then constipation and poor oral intake. She had previously been fit and well. Due to a normal examination, she was diagnosed with temporary lethargy post viral gastroenteritis (shigella was found on a stool sample), and not admitted but given an outpatient follow-up for two weeks.
Sophie initially presented to the paediatric emergency department aged 2 years 3 months with extreme lethargy, poor oral intake and weight loss. Parents reported she had not been well for 5 weeks, initially with diarrhoea for 2 weeks, vomiting for a week then constipation and poor oral intake. She had previously been fit and well. Due to a normal examination, she was diagnosed with temporary lethargy post viral gastroenteritis (shigella was found on a stool sample), and not admitted but given an outpatient follow-up for two weeks.
At this follow-up appointment, Sophie had started to eat and drink again and was walking and playing more with no further episodes of diarrhoea. Advice was given for appropriate foods post-gastroenteritis and further follow-up arranged for a month. At this review, further weight loss was noted and when plotted on a growth chart showed a decrease from the 91st - 98th centile to the 25th centile for weight in 8 weeks. Height was on the 75th centile. Parents reported that diarrhoea had returned and persisted despite a course of antibiotics prescribed by her GP.
Due to concerns about these persistent symptoms and presenting malnutrition, an in-patient admission was arranged. Blood tests were taken which returned a positive anti-TTG titre of 155 units/mL, ferritin of 9mcg/L and Haemoglobin of 91g/L. Sophie was therefore referred to the dietitian who met with the family on the ward to give advice on starting a gluten free diet in hospital and food provision was arranged.
Following 2 days of food refusal, the decision was made to pass a nasogastric tube (NGT) to ensure Sophie met her nutrition and hydration requirements to prevent further malnutrition. A continuous peptide feed was used overnight to aid gut rest alongside a gluten free diet in the day. A review two days later showed that appetite had improved and Sophie was managing a good portion of gluten free pasta for lunch and evening meal as well as gluten free snacks during the day. Although stools had begun to normalise, she had experienced vomiting in the morning following her overnight NG feed and was refusing breakfast. NG feeds were therefore decreased to reduce the risk of vomiting and trigger appetite in the morning but oral supplements were encouraged in the day.
At this point a repeat blood test showed an anti-TTG titre of >200 units/mL and IgA of 3.4. As per recent ESPGHAN guidelines, a diagnosis of coeliac disease was therefore confirmed without the need for a small bowel muscosal biopsy and information was given to Sophie’s parents about continuing a gluten free diet at home.
Sophie was discharged home after a week’s admission, having gained 500g in weight. She was discharged with the NGT in situ as it was felt she was not yet meeting her estimated requirements orally and was refusing oral supplements. After a further week at home, she was eating extremely well having adapted to her gluten free diet and had gained a further 600g in weight. As she was also managing 300-400ml of oral supplements the decision was made to remove the NGT and monitor intake and weight without it.
Sophie was reviewed in the dietetic out-patient clinic 2 weeks after discharge and presented at this point as a very bright, happy and energetic girl. She was continuing to eat well and her weight had increased to the 75th centile. Stooling had completely normalised, with a soft stools being passed one daily and there had been no further episodes of abdominal pain or vomiting. Discussions surrounding the diet showed parents had a good understanding of how to manage a gluten free diet and appropriate steps had been taken to limit exposure at home and nursery. As Sophie was managing so well, a further review was arranged for 3 months where repeat blood results showed a significantly decreased anti-TTG titre of 24 units/mL, ferritin of 16mcg/L haemoglobin of 119g/L and a weight and height both on the 91st centile.
Although Sophie recovered well on a gluten free diet and her growth caught up satisfactorily, a learning from her presentation of relevance to primary care and general paediatricians, is the need for a low threshold for investigating coeliac disease in symptomatic children. A coeliac screen was not organised until 10 weeks after the onset of symptoms and although her gastrointestinal symptoms were not classified as ‘persistent’, due to the speed and extent of weight loss, it may have been beneficial to take blood samples for a coeliac screen earlier than occurred.
Due to concerns about these persistent symptoms and presenting malnutrition, an in-patient admission was arranged. Blood tests were taken which returned a positive anti-TTG titre of 155 units/mL, ferritin of 9mcg/L and Haemoglobin of 91g/L. Sophie was therefore referred to the dietitian who met with the family on the ward to give advice on starting a gluten free diet in hospital and food provision was arranged.
Following 2 days of food refusal, the decision was made to pass a nasogastric tube (NGT) to ensure Sophie met her nutrition and hydration requirements to prevent further malnutrition. A continuous peptide feed was used overnight to aid gut rest alongside a gluten free diet in the day. A review two days later showed that appetite had improved and Sophie was managing a good portion of gluten free pasta for lunch and evening meal as well as gluten free snacks during the day. Although stools had begun to normalise, she had experienced vomiting in the morning following her overnight NG feed and was refusing breakfast. NG feeds were therefore decreased to reduce the risk of vomiting and trigger appetite in the morning but oral supplements were encouraged in the day.
At this point a repeat blood test showed an anti-TTG titre of >200 units/mL and IgA of 3.4. As per recent ESPGHAN guidelines, a diagnosis of coeliac disease was therefore confirmed without the need for a small bowel muscosal biopsy and information was given to Sophie’s parents about continuing a gluten free diet at home.
Sophie was discharged home after a week’s admission, having gained 500g in weight. She was discharged with the NGT in situ as it was felt she was not yet meeting her estimated requirements orally and was refusing oral supplements. After a further week at home, she was eating extremely well having adapted to her gluten free diet and had gained a further 600g in weight. As she was also managing 300-400ml of oral supplements the decision was made to remove the NGT and monitor intake and weight without it.
Sophie was reviewed in the dietetic out-patient clinic 2 weeks after discharge and presented at this point as a very bright, happy and energetic girl. She was continuing to eat well and her weight had increased to the 75th centile. Stooling had completely normalised, with a soft stools being passed one daily and there had been no further episodes of abdominal pain or vomiting. Discussions surrounding the diet showed parents had a good understanding of how to manage a gluten free diet and appropriate steps had been taken to limit exposure at home and nursery. As Sophie was managing so well, a further review was arranged for 3 months where repeat blood results showed a significantly decreased anti-TTG titre of 24 units/mL, ferritin of 16mcg/L haemoglobin of 119g/L and a weight and height both on the 91st centile.
Although Sophie recovered well on a gluten free diet and her growth caught up satisfactorily, a learning from her presentation of relevance to primary care and general paediatricians, is the need for a low threshold for investigating coeliac disease in symptomatic children. A coeliac screen was not organised until 10 weeks after the onset of symptoms and although her gastrointestinal symptoms were not classified as ‘persistent’, due to the speed and extent of weight loss, it may have been beneficial to take blood samples for a coeliac screen earlier than occurred.
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