Practice A Patient’s Journey

Coeliac disease in childhood

BMJ 2009; 338 doi: https://doi.org/10.1136/bmj.a3066 (Published 19 February 2009) Cite this as: BMJ 2009;338:a3066
  1. Henry W M Willis, patient1,
  2. Nichola M Willis, Henry’s mother1,
  3. George W Willis, Henry’s father1,
  4. Faisal R Ali, foundation year 2 doctor 2,
  5. Colin Ball, consultant paediatrician2
  1. 1London
  2. 2Department of Child Health, King’s College Hospital, London SE5 9RS
  1. Correspondence to: Dr F R Ali f.r.ali.01{at}cantab.net
  • Accepted 2 September 2008

An 11 year old boy explains how coeliac disease affects him, and his parents tell of the obstacles to the diagnosis

Henry’s perspective

I don’t remember ever not having coeliac disease—my earliest memories of it are when I was in hospital and the staff gave me Jaffa cakes to eat before I was diagnosed and when I played with Lego while I was having a blood transfusion.

My nursery report says I said to my teacher after returning from being diagnosed, “I can’t eat cup cakes anymore” so I guess I understood what had happened.

It is annoying not being able to eat cake and other foods at birthday parties and other celebrations, but most of the time I don’t feel any different from other children. My primary school won’t cook me a gluten-free lunch and has stopped letting me take a flask of hot soup in my lunch box, which I miss. I hope by the time I am older there will be more gluten-free foods like doughnuts. Bakeries smell so good. I often take my own food to barbecues, parties, aeroplanes, etc.

I am very rarely unwell but do get tummy aches every now and then. It is difficult to tell if this is because of my diet or just a tummy ache. The one thing I do really hate about having coeliac disease is the blood tests. I am not sure I will ever get used to them.

My aunt and two of my cousins also have coeliac …

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