7 year old boy, so very skinny - coeliac links

[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?

My son's consultant allergist has performed a patch test on his back with some milk, weetabix and other alergens on a tiny metal plate held. They put each one of these on his back for 3 days, this is a new test here in Wales. It came back inconclusive because the patch fell off and I put some normal plaster to hold it on his back, which made the skin swell and caused redness. We will have to re-do it at some point. Your son will need to be eating gluten for this and to be in contact with the allergens for this.

The test is a good way to identify long term intolerance but you will need to put a special vest on your son and to be ever so careful so that the patches do not come out or slide off. It's very fiddly but it might help you. Good luck.

I have coeliac disease, diagnosed as an adult. My niece also has it, diagnosed at 18 months. I have heard that the blood test can be negative, but the biopsy positive. The procedure for biopsy is a tube down the throat which takes a sample of the gut, done under heavy sedation but not GA. You do need to have been eating gluten before the test. I was actually told to 'load up' on it before the test. The benefits for your son on actually being diagnosed will a) be an entitlement to some gluten free foods on prescription and b) knowing there is a definite reason why he can't eat gluten - that makes sense to me!!

I'd speak to your GP about what the next step should be, but bang on about the family history as AFAIK there are strong family links with coeliacs.

I don't have coeliac disease but am gluten intolerant, which other people can be a bit sniffy about, as if I'm making a fuss. But I know the consequences of eatting bread etc! And I can remember periods as a child of terrible lethargy which with hindsight I think was related.

At least if you got the test done you'd know one way or another.

If it does so happen that he has coeliac disease or needs to be GF, as far as food goes, how about you all try and eat at least some of the same things to encourage him. There's a good, very simple cake reciepe on the back of the Doves' GF flour packet. Lots of the GF stuff off the shelves is getting better, like pizza bases. And I've invested in a panasonic bread maker with a GF setting. It was quite pricey but overall worth it because I feel so much better. Good luck.

My friend is coeliac and her daughter has just been diagnosed.

She did a finger prick blood test for her first. Then they went to the GP where she was referred to the hospital. They did a proper blood test but she was also told to keep her on a normal diet. That way when they did the endoscopy they could see the extent of damage.

My other friend's son has grown in height but not put on any weight, he was tested for coeliac but isn't and now takes a vitamin supplement to help him but he is generally a good eater with a varied diet.