The Doctor Gluten Project

A typical story:

I see a child at 18 months of age.  She has loose bowel motions and is not growing as expected.  Her blood tests for coeliac markers are normal.  However, because of concerns about her growth I organise a small bowel biopsy – and it is normal.  I again see this child at 4 years old, and blood tests are now slightly positive for IgG-gliadin antibody.  She has no new symptoms but she is growing slowly and still has loose motions and a bit tired. A decision is made to stay on gluten foods.  Then for the third time I see this child at 7 years old.  There is not much clinical change (still some intermittent diarrhoea, still creeping along for growth, but now more irritable and cranky).  The repeat blood tests show a higher IgG-gliadin antibody and a positive tTG.  I organise anther small bowel biopsy and this time it is positive.  The child now has full-blown Coeliac Disease.  A gluten-free diet is started, the bowels become normal, the behaviour greatly improves.  Over the next few years the height and weight begin to climb.

By this time there are brothers and sisters about.  Some with mild symptoms, others without symptoms.  Now all of the family has blood tests and many in the family have varying degrees of gluten sensitivity.  So most of the family goes gluten-free – with everyone feeling a great deal better.

This is the problem.  Coeliac Disease is a disease in progress and you have to be aware of it all the time.  You cannot be reliably told that you will never have Coeliac Disease, especially if you have a family with Coeliac Disease or gluten sensitivity.

So how often should your child have blood tests?

It depends mostly if your child has any subtle symptoms.  In my practice, I look at coeliac markers every 6-12 months in a young child with symptoms but negative blood tests.  I do them every 2-3 years in older children with a suspicion of gluten sensitivity but negative blood tests.  Lastly, every 1-2 years in a child without symptoms but with positive blood tests.