7 year old DS 'failing to thrive - coeliac in family...

[zephyrcat]

Hi all, our 7 year old boy is 2nd of four children. We are quite concerned about his weight and general 'failure to thrive'. He weighs the same as his 4 year old sister and his clothes just hang off of him. My Mum and her brother have both been diagnosed with Coeliac disease - my Uncle doesn't have a reaction to gluten but his body doesn't absorb and nutrients and so he has always had the same appearance as our DS. We took DS for a coeliac blood test, which was negative (as was my Uncle's) We then decided to switch him to a gluten free diet so we could run a trial and see if he started to put on weight. It's been about 6 weeks and DS hates it. We have fully explained why we are doing it and the ins and outs of what the disease does etc and he keeps asking us to stop the diet and let him have the biopsy so we know for definite one way or another.
We would certainly not just get him a biopsy on his request but we are starting to wonder if it's something we should do.

Does anyone have any experience of this - either with coeliac testing or a very underweight child?

If you do decide to get the biopsy dies he will have to go back to a normal diet.

If he is struggling with the diet, if he is gaining weight on gf, I would think about it tbh

What does your gp think?

Yes, he will have to go back onto a gluten diet for a biopsy, but we've only been on gf for 6 weeks, in which time there hasn't really been any change in his weight but as my Mum says, his body will need some time to heal and then start to turn around. It is very difficult to keep the gf diet going - we have basically turned the whole house gf so that we aren't leaving him out of favourite meals etc.

When my DP took him to the doc after his blood results, the doc was a bit vague and pretty much said to just go away and track his weight for another 3 months (on normal food) but we know already he isn't gaining any weight!

We're at the point now where we realise that if the biopsy brings a positive result, we have to stick to the GF diet anyway. On the other hand, if we are struggling along for no reason is it better to just find out for defiite?

I would try to push for the biopsy if you can. The blood test can often have false negatives (although almost never false positives) and with the family history and 'failure to thrive' it's got to be worth checking. Untreated coeliac disease has very serious long term effects so shouldn't be ignored. DD1 was diagnosed in April (she turned 10 in June) and tbh we really haven't found it that difficult at all. DH and I haven't gone gluten free, we just adapt DD's meal eg using gf pasta with same sauce as us.

Agree, push for a biopsy - apart from anything the longer he is off gluten the worse it will be to reintroduce it (if it is the problem). Is your GP handling this, or is he under the hospital - I would recommend the latter tbh

I was diagnosed with coeliacs in July, my bloods were negative but the biopsy was v. clear.

My DS was skinny, pale, dark eyed and not growing at all - as a baby he was always on the 95th centile and dropped right down but he wasn't ill - he had constant diahorrea and was only tested (blood done at same time as biospy) when I had a meltdown at the doctors about it not being normal. TBH we are 95% GF in the house, DH still has bread and biscuits but all meals are GF - I don't cook differently to how I did before just adjusted the recipes. What sort of things do you cook ?