Wednesday, 24 April 2013

The Genetics Factor

Katya, my younger daughter (now 19 months), has been a little off colour of late. In my head, I know it's just a bit of a cold  (and the fact that she fell off a kitchen chair and bashed her head on the floor), but my gut can't help tightening just a little but whenever she's unwell.
We waited so long and made so many excuses before getting help when Alex was sick, and knowing that there is a genetic element to Coeliac's, I do worry about Katya having it.

It's a family affair:
Although Coeliac's can run in families, Alex is the first person in either mine or my husband's (extensive) clans to be diagnosed with it. That said, it's most commonly diagnosed in people between the ages of 40 and 60, so there's still time for some more gluten-intolerants to emerge! Hopefully no one else will be affected, but there is an increased risk that one of us may have it.
The National Institute for Health and Care Excellence (NICE), who make recommendations for best practice in the prevention, diagnosis and treatment of ill health, recommend that first degree relatives of people who are diagnosed with Coeliac's disease get tested for it using a blood test. (Find the NICE Guidelines here: This means parents, siblings or children of the person affected. This is not something that was offered to us at any point during Alexandra's recovery, although I know of parents in other areas who were offered testing almost as soon as their children received the diagnosis.

Testing times:
When I found out that I was pregnant with Katya I expressed concerns to Alex's consultant about the new baby having the illness and was told we could get her tested when she was older if we wished, once she had been weaned and had gluten in her diet. When my husband asked about this again once Katya was born, the consultant told him that there was no need to get Katya tested unless she was displaying symptoms of the illness. I hadn't been able to make that particular appointment and (being the gobby one in the relationship) would probably not have accepted the consultant's decree without a bit more of a challenge. For a start, Alex hadn't displayed any of the common symptoms of Coeliac's (diarrhoea/ vomiting)  for a very long time- all we noticed was her getting more and more cranky and crying alot (not unusual for babies!). Secondly, I really didn't want to have a very sick baby and to put Katya through the awful experience of becoming unwell before doing something. But most importantly, I was becoming really quite paranoid about any little whimper or grumpy patch that Katya had, feeling worried at any teething pains or changes in routine, over-analysing any picky behaviour with food and therefore I was 'giving in' to Katya's behaviour and not setting the same boundaries as I had done with Alex for fear that it was Katya getting sick that was affecting the way she was acting and responding.
Luckily, our GP was very understanding and had absolutely no hesitation in getting Katya tested- and also offering to have myself and my husband tested if we wanted to be.
All it takes is a simple blood test, and luckily for our little family, all of our results came back negative for Coeliac's.

I know that this is probably (but not necessarily) the end of the story. The negative test means that our bodies are not producing anti-bodies to gluten at the moment, but I have been told that there is a slim chance that Katya may go on and develop it at some point in the future (although it is unlikely). Hence the slight worry when our toddler throws tantrums. As I said, my head knows it's silly, but I'm still just a little bit vigilant.
Has anyone else has more than one person with Coeliac's in the family? At what stage did the illness get picked up? Has anyone had a  sibling that has been diagnosed further down the line?


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