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Should I take her for coeliac testing? DD has dropped centiles

52 replies

tinkerbellvspredator · 08/07/2014 16:00

DD has a grandparent with coeliac disease (DH hasn't been tested), she has no obvious symptoms but I've just realised that she has dropped centiles on her growth chart. She does also say she's got sick coming up to her mouth, this seems to be mentioned in fits and starts so not sure if it comes and goes or it is consistent and she just doesn't mention it all the time - no idea if this could be caused by coeliac disease.

In her first year she tracked the 25th centile consistently, at her 2year 3 month check she was still on 25th centile for weight but down to 9th centile for height. She has now turned 4 and I haven't been measuring her since then but just have and she's below the 9th centile for height and weight.

I'm sure it could be absolutely nothing and she is now on track to be the same height as me (i.e. a shortarse), DH is average height so not tall.

If I took her to the GP do you think they would test her, and if not should I go private? My concern is just that if she does have it it would be better to catch it early both from a health perspective and accepting the change in diet.

OP posts:
glutenfreecake · 21/10/2014 20:02

I think some of the problems with diagnosis lies with what they consider normal, different hospital tests seem to have quite a varying level of normal, our GP said normal was 7 and our paed gastroenterologist said normal was 15. symptoms, high antibodies and a positive genetic test are enough for most consultants to consider avoiding the biopsy. Follow up blood tests showing reduction in antibodies whilst on a gluten free diet also confirm diagnosis. It's a lot to take in, I was diagnosed 17 years ago, and I still remember reeling from the shock.

tkband3 · 22/10/2014 22:39

When DD1 was diagnosed, over 8 years ago now, my overwhelming feeling was one of relief (and slight vindication - I'd had 2 years of battling with the doctors trying to get them to acknowledge that there was something wrong), primarily arising from the fact that DD1 had been so ill, I'd thought there was something really seriously wrong with her, so to find out that all I had to do to make her well again was to change her diet was a big relief.

It does make life difficult, there's no getting away from it. But awareness and understanding has increased dramatically, just in the time since DD1 was diagnosed, and the supermarket shelves are now stacked with free from foods, and the labelling is clear. My DDs (all three are coeliac) have had to have packed lunches at school, but DD1 is now at secondary school and they are much better set up to deal with gluten free as all the food is made fresh.

You identified the one area which was most upsetting for my DDs when they were younger - going to a birthday party and not being able to have the cake. I always used to ask the mum hosting the party what kind of food they were supplying and try to duplicate it as much as possible, so they didn't feel too different at the actual tea (although sometimes their friends would like the look of their g-f food, rather than the party food!), but the cake is a tricky area. I have a couple of friends who bake their own cakes and were happy to bake gluten free and you can now buy gluten free birthday cakes in Marks and Spencer so it is much easier to cater for coeliac children.

Just as an aside, M&S do a great range of g-f food - pretty much all their sausages are g-f, they even do ready cooked cocktail sausages. They have g-f scotch eggs as well! And (as the festive season is on its way), their Christmas range of things like stuffing, pigs in blankets and sausage meat is mostly gluten free too - my whole Christmas dinner is gluten free and no one notices any different.

If you're a baker, substituting Doves Farm gluten free flour for standard flour in most recipes works very well - just add a little more liquid as it's much more absorbent. And you can make an amazing white/cheese sauce with Doves Farm rice flour - the recipe is on the pack.

I hope some of the above is useful - it's a tough time, but once you've moved onto the g-f diet, I'm sure that the change you'll see in your DD will make it worthwhile. My DD1 was a changed child within 2 weeks - she'd always struggled to eat and had no energy and watching her shovel in gluten free pasta with gusto used to make me very teary in the early days. Best of luck - happy to help with more information if you need anything Smile.

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