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Ceoliac (celiac?) disease/gluten intolerance - can anyone talk to me about this?

11 replies

funnyhaha · 21/02/2008 09:57

A friend with a daughter who recently got a diagnosis for her daughter suggested I might want to think about getting dd tested for this.

She is very, very petite (but neither dh & are are large) and since about 6 mths has hovered around/under the 4th percentile, despite being average height. Her tummy is often huge (but dh points out that's she's a piglet & does often stuff herself) She is paleish, and often has dark circles round her eyes (having slept well).

OTOH, she has more energy than another child I know & is pathologically happy, so assume in no pain.

I'm taking her to be weighed this afternoon, & was planning to talk to the hv ... but given that i don't trust them they can't be experts in everything, thought I'd ask here too

Is it easy to test for? Am I wasting my time worrying about a healthy but scrawny dd?

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DettaJnr · 21/02/2008 10:04

Yes there are a few tests. Some invasive, like biopsy of the bowel. But she can have a simple blood test done.

Has she got other symptoms like pale stool, bouts of diarrhoea? Sometimes skin conditions like psoriasis and eczema are often linked.

I have two siblings with this. It's not the end of the world if she is diagnosed but you will have to cook everything from scratch.

onepieceoflollipop · 21/02/2008 10:14

My dh has coeliac disease diagnosed aged 18 months. He is now 41 btw!

dd1 had a 1 in 10 chance and was tested (just the blood test) at around 15 months. She wouldn't have been tested routinely, but I asked the GP to refer her as we had noticed an increase in dirty nappies and very slight weight loss. She was fine; in retrospect it coincided with her eating quite a high fibre diet leading to more loos nappies, but obviously I was being vigilant.

DettaJnr although it is true you need to follow a strict gluten free diet, you by no means have to cook everything from scratch. Most supermarkets have a large free from section. Also bread,pasta and other basics are readily available on prescription in the UK.

funnyhaha if you have concerns then I would advise asking your GP rather than Health Visitor. If there are clear concerns then any decent GP should refer you to a paediatrician or other suitably qualified specialist. I agree that pale stools/diarrhoea etc can be a sign, but not always. You may find further advice on the Allergies topic too. Or you could contact www.coeliac.org.uk

onepieceoflollipop · 21/02/2008 10:15

Btw the blood test is usually (if not always) tried before anything more invasive. However my understanding is that if you have a negative blood result this isn't always accurate.

funnyhaha · 21/02/2008 10:25

D'oh - didn't think of the allergies topic & thanks for the link, onepeiceoflollipop.
OK, might take her to be weighed (for my info) but not talk to hvs!
Poos do tend to be on the squidgy side, & rather light brown but not diarrheoa. Sorry if tmi.

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funnyhaha · 21/02/2008 22:30

bump for the evening crowd

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DettaJnr · 22/02/2008 09:23

What did the HV say yesterday?

funnyhaha · 22/02/2008 09:37

Clinic wasn't open
Am dithering ito whether to make a doc's appt - dh suggests (in the nicest way possible) that I'm being paranoid

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funnyhaha · 22/02/2008 09:38

Oh, & thanks for asking

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DettaJnr · 22/02/2008 09:53

I always like to think mother's instinct shouldn't be ignored. You know your child better than anyone and if you feel that something isn't right, persue it. Otherwise, you may feel bad if something does come up.

Men always say annoying things like that. My DH is a 'pull yourself together' type of person and I find myself over-compensating for this...

Tiggiwinkle · 22/02/2008 10:01

There is nothing to be lost by having a word about your concerns with your doctor.
I have two DSs with coeliac disease. One has just been diagnosed-he is 9. The other is in his twenties and he was only diagnosed 3 years ago. He went through childhood as a very thin child-my concerns were always brushed aside by our GPs who said he was just skinny by nature. Even when he became anaemic they just treated him with iron and did not follow it up.
As a consequence of his late diagnosis he has actually suffered a lack of bone density and has to take calcium tablets to build it up again. The consequences of non-diagnosis can be severe and long-term.

funnyhaha · 22/02/2008 20:48

Tiggiwinkle - that's a salutary story, thank you. You've convinced me it's worth worth going to the GP. I guess my concern is that (as she isn't showing many symptoms) whether he'll be convinced she's worth testing...

DettaJnr - to be fair, dh's argument is mostly that dd is obviously perfect

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