Diagnosis

So: take a quick look at this chart …

You’ve been diagnosed as needing a gluten-free diet, and you’ve been following the diet for a while – what follow up tests should you expect?

Our daughter goes annually now to see her paediatrician* for a checkup – it used to be every six months when she was younger, and newly diagnosed, but we’re old hands at this now, and she’s doing well.

We discuss:

  • her growth (height and weight) against the standard growth charts, to be sure she’s growing in all the right places and directions
  • her eating and sleep patterns
  • her general health and her rate of maturation (puberty)
  • and yes, the dreaded poo questions. Have you all seen the poo chart? It has 7 photos of different stool samples, and she has to identify her “standard product”. Fun for all the family to play …

The aim should be to produce something like number 4!

Then the doctor orders some tests – usually some blood tests to be sure that she is sticking to her diet and that everything is working OK, and a bone age scan.

This last isn’t the same as a bone density scan (which I imagine you would need as an older person), but assesses how well her bones are growing against her chronological age. In the ‘old days’, soon after diagnosis, her bones were several years behind her real age, but they seem to be catching up now.

Then that’s it for another year.

Other tests you might receive include:

  • blood tests for vitamin and mineral deficiencies
  • thyroid screen – this is because coeliacs have a greater chance of getting an underactive thyroid, with weight gain, feeling tired, cold and depressed. (An overactive thyroid – also possible – can cause weight loss)
  • a bone density scan – to check for osteoporosis, a known risk for people who fail to absorb nutrition well.
  • liver enzyme tests – just to check everything is working OK

And of course any other tests that might be needed in your specific circumstances, such as lactose intolerance tests.

Healing progress can be monitored by regular retests. Children generally recover within a few months; adults may take several years. I hope your recovery will be swift – and that you go back to scoring no.4 on the Bristol stool chart!

*Here in the UK, the paediatrician is the consultant your child (0-16) is referred to if there is some specialist problem that your GP (general practitioner) can’t deal with. The GP is the frontline family doctor, and the consultants are the secondline health providers based in hospitals. Healthy children – or those with straightforward childhood illnesses – would never see a paediatrician. My two other children haven’t, despite having had asthma, a heart murmur and broken limbs …

Are you 1 in 100?

Coeliac UK have an online petition underway, to lobby the government for earlier diagnosis for coeliac disease and dermatitis herpetitformis. So far they have just over 3,000 signatures – but that is less than 10% of coeliacs in the UK

Left undiagnosed coeliac disease can lead to serious complications yet four out of five people remain undiagnosed.

Please consider signing the on-line petition to add your name to the campaign calling on the Government to recognise the importance of early diagnosis and provide more appropriate training for GPs.

You can sign the petition here.

Self-testing for Coeliac Disease

This has been posted elsewhere (see for instance the CUK site, but here it is again: JRBiomedical has introduced the Biocard Celiac Test to let people self-test at home for coeliac/celiac disease with a pinprick blood sample – and the results are shown in less than 10 minutes. It is available at www.coeliactest.co.uk for £19.99.

Given that many people remain undiagnosed for months or even years, at that price it would be worth it. Of course, once you have the results, you should go to see your doctor anyway – and keep eating gluten until the doctor has confirmed the diagnosis. And if you have a negative result, but still have symptoms, then you should still consult your doctor. Bear in mind, too, that false negative results are quite common.

Anything that helps people eliminate these unpleasant symptoms from their lives should be welcomed.