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Give me some hope - 1 year old awaiting blood results

(6 Posts)
TheLongRains Tue 15-Nov-16 19:29:26

For the last year my baby hasn't been "right". Lots of painful screams in the night, very gassy, hasn't really ever had solid stools...

It was thought this was the result of an inappropriate antibiotic, but our new consultant is the first to look into coeliac disease.

It is in my family, though not in our nuclear family, so I know the score and what is/isn't allowed, and I'm used to cooking for coeliacs on holidays together etc, but honestly I'm dreading it being that in my one year old. Mainly because my heart breaks at the thought of her going to groups and parties and having to be the kid who can't eat what everyone else is. I'm not worried about once she's old enough to understand, but when she's so little they just want what everyone else has! I know there are way worse things she could have, but it's whilst she's too young to understand it I'm just so dreading it...

I'm hopefully panicking unnecessarily, but with these symptoms, please be honest and tell me if you think I should be realistically preparing myself for that news...:

Bloating and gassiness (extreme!)
She's never had solid poos, always like soup.
She's losing weight, despite her appetite being better than ever before.
She's very pale (but so am I... But her dad isn't).
She has a saggy bum (!), which the consultant said is muscle wastage and a sign of coeliacs...

So... Is there much hope this could all be attributed to something else (something that will pass quickly, ideally!), or should I get used to the idea of having to be "mean mummy" who intercepts all the cakes and biscuits and replaces them with something that may or may not pass as a reasonable substitute, for the next couple of years..??

cestlavielife Wed 16-Nov-16 22:18:08

Sounds like coeliac
It is a pain but loads of food available and the difference gf diet makes to child I'd worth it

BarbarianMum Thu 17-Nov-16 18:30:51

It sounds like coeliac disease, sorry. If it is, the wonderful thing about it is that the treatment is non damaging (no drugs with dodgy side effects) and she will soon be well and thriving. And yes the toddler years are tough and you will have to plan ahead a bit more but ultimately she will be so, so much less bothered about it than you are. It will just be normal for her.

(I have coeliac disease and Crohn disease and ds1 had several severe food allergies as a child. Out of these honestly the coeliac is by far the easiest to deal with).

havalina1 Thu 17-Nov-16 18:52:12

My kids are "that kid" - unbelievably (to me anyway) one has an egg allergy and the other a peanut allergy. Both have anaphylaxis. I dread how to police them when they are older but not old enough to get it .... for now I'm with them or else nursery is managing their food but when they are big kids at parties...

You will manage it though. It seems more monumental than the everyday reality is. Hoping you get the news you want to hear OP.

TheLongRains Thu 17-Nov-16 20:37:42

Thanks for the replies - I'll keep myself braced for it being coeliacs, as you're right, the symptoms do look pretty convincing...

And I am glad that it's already in the family (which sounds mean!), as that means I am at least already used to reading labels and knowing what's already fine.

It is that in between stage, isn't it, havalina1 ?! That's what I'm most worried about! Once she's old enough to know why she can't have things, I'll be ok, but until then I'd just feel sad for her.

No news yet, so maybe that means the tests were clear...fingers crossed!

Amin141 Sat 10-Dec-16 21:44:43

I'm sorry to hear this about your baby. As a nutritionist, what would be recommended would be to take a food diary, and record what your baby is eating. You can also track the time-lag between meals and symptoms. This may help your consultant decide what exactly is going on. At least then you can be sure of what is definitely exacerbating symptoms. A good app that is built for just this is and is recommended by the NHS. Hope it helps

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