Guest Bloggers

Daddy Coeliac… Getting Your Children Tested

Written by By David Johnstone. Friday, May 11th, 2012

Being a parent to two young wonderfully characterful children is a perilous vocation.  But for a Coeliac, it’s a full-blown health hazard.  I’m the only person in my family / household who has a Gluten free diet.  Not to say that we don’t have the occasional meal that we can all share.  With a Toddler, Infant, Pescetarian and a Coeliac, its not an easy balancing act to cater for all preferences.  But for sure its not the hardest range of requirements to meet.

One of the hardest things I had to deal with as a Coeliac Dad… is not being able to finish my children’s and wife’s food.  Loved our visits to Pizza Express pre diagnosis days, was always an extra slice or two to be finished off, eagerly and easily accommodated by myself.  Now just have to ignore the glorious gluten-ness poison calling to me!  Its amazing the Gross-out resilience that you build as a parent, happily re feeding half masticated foods with your fingers back to your child.  Or accepting the same offerings that your beloved child wants to feed you after the failed 2^nd attempt.  Fascinated and shocked me when I caught myself doing stuff like this.  Thankfully cant do this anymore.

My little boy, now 4, sort of understands the situation.  Smugly telling that I cant have any of his food as… “No Daddy, Its not Gluten Free!”  Last Christmas my Wife and kids built and decorated a Ginger Bread house (Ikea Special).  So after a meal while they were tucking happily into the roof, I asked my son what I could have… “Don’t worry Daddy, you can have a Yogurt!” came the reply. Well he was certainly correct, bless him!

But my little girl, 18 months, obviously doesn’t understand.  She just wants to feed me her toast, pasta, pie… basically anything that can do my harm.  Or just kiss and hug me with a crumb and porridge covered face.  I usually resort to a forehead kiss on the way out in the mornings; unfortunately she’s a typical messy eating toddler (we were spoilt with my son. To proper by far).  So even that part or her hair is still a gluten hazard.  Certainly don’t live in the ideal sterile Coeliac environment.

1 in 10.  That’s the recognised chance a Coeliacs first-degree relative has off having Coeliac Disease as well.  Personally it seems a much higher percentage than that.  Certainly from meeting and talking to people on twitter.  But as we all know, there is still so much grey area with coeliac disease.

With that in mind.  We are keeping a very close eye on any symptoms in our children.  The basic advice and guidelines you’re told to look for in children is 1) Failure to Thrive and 2) Bad Movements / Sickness etc.  Certainly couldn’t say our kids suffer from that, and personally reckon that will only identify obvious and extreme cases.  But was still a little concerned about my son last year.  He would often complain of a tummy ache and possible questionable movements, what I was most concerned about was his low energy levels, extreme low mood periods and slight behaviour differences to our wonderful little man.  All of this could easily be normal maybe attention seeking behaviour for a then 3 year old boy.  But it all seemed familiar for me, very similar to some of my pre diagnosis experience.

So through our GP we got our son tested.  She arranged the full range of blood testing etc… a difficult experience for a little man.  His arms had to be pre numbed with a topical cream before the trip to the hospital for the blood tests.  GP surgeries don’t carry out blood test on such young children.  The blood and anti-tTG2 tests showed nothing obvious apart from a slightly low iron level.  Very similar to my story, all my many anti-tTG2 tests were negative, was diagnosed later by the genetic HLA-DQ2/8 test.  That next step would require a specialist and our GP recommended to keep and eye out for other symptoms, use a Kids supplement to raise iron levels and take it from there if we were more concerned.

Nothing was conclusive, decided to carry out a Gluten Free Challenge for one month and see if anything improved.  Another tough trail for a little man not being able to have his usual foods.  We saw some improvement over the GF challenge time, he enjoyed being like Daddy and loved having his special Free From Jam Tarts to ease the path.  But still difficult to quantify and inconclusive.  When we stopped the GF Challenge his behaviour and moods did deteriorate again, that was on the lead up to Christmas and once that passed everything calmed down again. So who knows… it could be just normal, the iron supplement helping out or all the early warning signs.

The main thing for me is, I don’t want my children going through any the problems I’ve had during this.  Don’t want them to be ill or subject them to any risks of Coeliac related conditions.

But I’m also very aware that I have no wish to subject them to a strict Gluten Free lifestyle on a back of a whim.  Don’t get me wrong, I’m not down on being a Coeliac or think it’s the end of the world.  Believe every Coeliac must agree it’s a very difficult but necessary diet.  Imposing restrictions or extra battles for our lifestyles, experiences and most obviously food.  I don’t want my children going through that unless absolutely required.

There are currently new testing criteria and guidelines being discussed by the appropriate European health bodies.  Alex Gazzola has (as always) written a brilliant report on this and the recommendations. Worth a read for any Coeliac parent concerned for their child. Here’s the link http://t.co/RR1wav2F  I really hope that “NICE” adopt and use it here in the UK.  I will most certainly be pursuing my Gastroenterologist at my next appointment and asking for my kids to be genetically tested.  At least then I will know if there is a risk of developing it later.  Until then we will be closely monitoring how they do.