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Mumsnetters aren't necessarily qualified to help if your child is unwell. If you have any serious medical concerns, we would urge you to consult your GP.

doc thinks my dd(6) has coeliacs - anyone know anything about it?

(14 Posts)
cleaningsucks Sun 04-Oct-09 10:49:31

help! what are the long term implications? what do i do now? what on earth do i feed her for breakfast?

mrsdisorganised Sun 04-Oct-09 14:25:40

I'm surprised you GP has let you go away without giving you any advice.

They should firstly confirm with a positive blood test then endoscopy, if your doctor wants to do this then a full on wheat diet is a good plan for 3 months prior just to make sure you get a 'proper' result, not enough wheat in the diet can give a false test result.

There are alot of gluten free products around now, Tescos, Morrisons, Co-op etc all have a section and you won't be stuck although it takes a little time to get used to checking the ingredients.

Hope you can get it sorted.

PacificDogwood Sun 04-Oct-09 14:29:50

[ Bit more information]

As mrsdisorganised said continue diet with wheat/gluten until diagnosis confirmed. If it turns out that he does have Coeliac's Disease he will then have to stick to a gluten free diet. Lots of things like bread, pasta, rolls etc are prescribable by your GP. And he should also be referred to a dietician. If he sticks to a good gluten free diet he should lead a healthy and "normal" life.

PacificDogwood Sun 04-Oct-09 14:30:16

bugger, link did not work

PacificDogwood Sun 04-Oct-09 14:31:09

"Her", and "she", I am sorry, only excuse is preghead hmm

mrsdisorganised Sun 04-Oct-09 14:33:28

Join the club Pacific! Can't string any sentences together in adult fashion anymore!!grin

CMOTdibbler Mon 05-Oct-09 09:30:44

I have coeliac disease - first thing is as other posters have said is not to do anything until your DD has a proper diagnosis.

Long term, if a gluten free diet is stuck to, there are no implications for her health. Eating out can be a pain, but you'll soon get used to it at home, and it'll feel totally natural. CD hasn't held me back at all, and I travel the world for a living, so eating out isn't impossible !

tkband3 Mon 05-Oct-09 09:40:39

My three DDs all have coeliac disease - DD1 was diagnosed at 2.8, my DTs were diagnosed earlier this year at age 4.

As others have said, once the diagnosis is confirmed, there is lots of stuff available on prescription and in all the big supermarkets now. Eating out is an issue, but more and more restaurants are becoming aware - we have a local Italian which does g-f pizza and pasta now and we take our own pizza bases to Pizza Express for them to cook for us. Carluccio's are also now doing g-f pasta.

Once the diagnosis is confirmed, for breakfast if she likes cereal, you can get g-f cereals in the big supermarkets - my girls particularly like Doves Farm chocolate stars and Kallo honey puffed rice. The main thing that is hard to get used to is the difference in the texture of the bread - by and large it's ok toasted, but not great as plain sandwiches, although there's a fantastic new loaf you can get in Tescos called Genius Bread which is, frankly, Genius!

You can buy all sorts of cakes and biscuits, but I've found the Doves range of flours really great for baking - they do a self-raising flour now which I've successfully substituted for standard recipes.

HTH - happy to help with more info as and when you need is hard to come to terms with it, but once you change your DD's diet, you will be amazed by the change in her and how quickly it happens.

beanpip Mon 05-Oct-09 09:56:25

CMOTdibbler is totally right - if you are going to go through with the tests and 'proper' diagnosis you must not change her diet until after the tests have been done. This is so they can still detect gluten sprue in her system.

However, you do have the choice to NOT go ahead with the tests and 'proper' diagnosis. You can just change her diet yourself - its really not that difficult - and see if her health improves. There are no negative health implications whatsoever for anyone to stop eating gluten so don't worry that she might miss out on any vital nutrients. In fact, from a nutritionists point of view, it would do many people a great deal of good to consume a lot less gluten!

Good luck smile

cleaningsucks Mon 05-Oct-09 19:42:22

thank you so much for your input all - you are amazing!

I really don't know what to do. the doc told me to cut gluten out and see what happens - but i'm guessing that, fairly understandably, the gp often has limited knowledge of less usual complaints.

i'm reluctant to put dd through an endoscopy and so forth, but i think thats the only option for a proper diagnosis - is that right?

and - great advice re cereals and so forth. i really do appreciate it. another q - what do you do about school lunch?

2madboys Mon 05-Oct-09 19:51:06

Hi Cleaningsucks - my DH and MIl are both coeliac. DH had a proper diagnosis with blood test. MIL was just told to stop eating gluten. Because of this she can't get the GF stuff on prescription - she can't face going back on the gluten in order to be properly tested. DH was diagnosed a week before Christmas last year and we thought it would be a complete nightmare but it's not been too bad really. Unless you eat loads of convenience food, it's not that difficult.

CloudDragon Mon 05-Oct-09 20:02:38

ring Coeliac Uk their advice line is fantastic.

CMOTdibbler Mon 05-Oct-09 20:05:29

Go back to the GP and ask for your DD to get tested by a gastroenterologist, as per the NICE guidelines for the diagnosis and management of CD.

Some schools will be able to provide a GF lunch - talk to them about it. They should all be able to, but some won't do a good enough job or only provide a cheese jacket potato everyday

tkband3 Mon 05-Oct-09 22:33:26

Definitely go back to your GP and ask for your DD to be properly tested. GPs often don't know enough about coeliac disease and to simply tell you to cut out gluten is misguided to say the least.

Your DD should have an initial blood test, which your GP can send you for. The results of these generally take about 2-3 weeks to come back and depending on what the results are, your DD should then see a gastroenterologist as CMOT says. Your GP might as well do the referral to the gastro at the same time as ordering the blood tests to save time when the results come through.

Being properly diagnosed is beneficial because, as well as getting lots of stuff on prescription (and g-f stuff is quite pricey so it's good to get some things for free/cheaper if you can) and your DD will also have annual check-ups with a paed and annual blood tests. You are also on the radar then if there are any developments in the treatment of CD.

Our school doesn't provide a GF lunch - DD1 could have a jacket potato, but I'd rather she didn't have that for lunch every day especially school dinners are £2 a day! But they have been very good about other things such as providing GF playdough in nursery and reception and have sourced suppliers of the flour necessary to make it.

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