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My teenager has been diagnose with Coeliac Disease and I am really struggling to pull myself together

127 replies

AdverseClamber · 20/12/2024 23:53

It's been a couple of weeks now and I'm honestly finding it overwhelming. I think she's maybe been sensitive since forever but maybe getting Covid or just puberty itself meant it got a lot worse. Doctors thought her painful stomach was down to periods (and tbf she did have terrible blood loss etc) but I now realise she was being treated for rashes, low iron, abdo pain that described as 'like knives' and that these are red flags for CD.
So I'm struggling because I do feel like this should have been diagnosed earlier, if i'm honest, and she's been suffering for 3 years when it should have been picked up prior to now. ('m not feeling guilty, fwiw. Or not massively at any rate. I was up and down to that doctors with her and made to feel like a tit for not just accepting that she was in pain so much (cos i think girls are just supposed to suffer, right?)
But also... fgs. It's so HUGE. and so shit. Our kitchen is teensy so we all have to do it and i'm sick of it already.
Bah. That's it really. Bah gluten-free humbug.

OP posts:
JiminaSlump · 25/01/2025 09:32

@Unexpecteddrivinginstructor **

I am not coeliac (although the original GP did mess up the testing so we will probably never actually know) I do become quite ill very quickly if I eat anything with gluten (tingly mouth, D&V).

Have you been tested for a wheat allergy? Because these sound like allergy symptoms, rather than intolerance - my child is anaphylactic to wheat, barley and rye but as far as we know is not coeliac. It's not the gluten - it's the wheat and similar cereals! Please consider it - yours is already affecting two systems of your body and that indicates a greater severity of reaction (in some places, it counts as anaphylaxis).

Unexpecteddrivinginstructor · 26/01/2025 19:48

I have considered that possibility but the reaction was not severe and I avoid gluten including wheat very diligently. Another GP said they could retest me but I would have to eat wheat again and it probably wouldn't change what I do anyway.

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