narnia Posted April 12, 2008 Share Posted April 12, 2008 i am trying to find out about this illness, as one of my grandchildren (aged 20 months) has just been rushed to hospital, suffering a huge weightloss (she's gone from 2st 7lbs, to 1st 10lbs in a couple of weeks).Originally, it was thought she had 'just' had a virus,flu-like illness,but now the docs think it's possibly Coeliac disease, or even an over-active thyroid.I know her mum and dad are really worried, and the poor little lass looks like a little ghost right now.........and she can't tolerate much in the way of food, her appetite is poor, and her favourite cereal (Weetabix) doesnt stay down and also causes diarrhoea.Other wheat based foods (bread etc) seems to have the same effect, so it's highly likely that Cd is the cause.So, anyone on here have experience of this, and a good diet for it???We want to get this little one built up and back to her 'fighting weight' and obviously, we have to wait for the diagnosis to be confirmed,but any ideas would be appreciated, as I realise wheat crops up in all kinds of foods! Quote Link to comment Share on other sites More sharing options...
Susan Posted April 12, 2008 Share Posted April 12, 2008 Seems to be lots of info here! Hope everything sorts out soon. Thinking of you. Quote Link to comment Share on other sites More sharing options...
Shiny Posted April 12, 2008 Share Posted April 12, 2008 Narnia No advice, sorry. Hope she is feeling better soon, and you find the information you require!! Quote Link to comment Share on other sites More sharing options...
Andreamay Posted April 12, 2008 Share Posted April 12, 2008 My Aunty and her daughter have this Narnia. They have to follow a special diet but it is managable and once she is on a stable diet things will improve dramatically. In a way it will be easier for her because she will not know any different as it took both my aunty and my cousin along time to come to terms with it and they miss things they enjoyed before. My aunty has an underactive thyroid I think she is on tablets but my cousin is able to control it by diet alone. Love to you and your family it is traumatic when a life time illness is diagnosed. Andrea Quote Link to comment Share on other sites More sharing options...
HappyMaz Posted April 12, 2008 Share Posted April 12, 2008 Narnia - what an awful time for you and your family. When your granddaughter has been properly diagnosed as having CD she will get professional help from dieticians who will be able to tailor her diet to get her through this crisis and then will be able to advise about what to avoid in the long term to keep her well. The Coeliac Society publish a really useful book which literally lists all the 'safe' foods to eat which are gluten free - so you can easily check when buying something that it is safe for your granddaughter. Things might have changed, but gluten free staple foods such as bread, flour etc used to be available on prescription for those who need to eat them to keep well. You won't have to do all this by yourselves: there is a lot of expertise about CD these days - it is a matter of finding out exactly what it causing her problems, how severely she is affected, and once she is stabilised working out where to go from here. I know it is a worrying time: you feel so helpless when the littlies are poorly don't you? Take care and let us know how she progresses. Maz x Quote Link to comment Share on other sites More sharing options...
narnia Posted April 12, 2008 Author Share Posted April 12, 2008 Thankyou for all your kind words and advice,it really helps xxx Quote Link to comment Share on other sites More sharing options...
fizzy Posted April 12, 2008 Share Posted April 12, 2008 Im really sorry to hear that narnia, i hope shes better soon. I have friends where all but one person in the family has it, they said it was hard at the start (constantly having to check food labels) but it a way of life now. Quote Link to comment Share on other sites More sharing options...
Guest Posted April 12, 2008 Share Posted April 12, 2008 sorry can't help but thinking of you all and I'm sure the professional will give you all the support you need and how to cope with the CD.... might be worth once idiagnosis is all done to get advice from Health visitor as well sure they will have lots of licks. xx Quote Link to comment Share on other sites More sharing options...
mundia Posted April 12, 2008 Share Posted April 12, 2008 One of my friends has CD, and a double whammy for her is tat she is diabetic as well. She gets bread etc gluten free on prescription, and there are lots of gluten free foods you can buy in ordinary supermarkets now (although expensive unless you make your own bread etc). My friend was diagnosed quite young and so has never really known anything other than gluten free lifestyle so it her its completely normal. Quote Link to comment Share on other sites More sharing options...
Deb Posted April 12, 2008 Share Posted April 12, 2008 Hope you're grandaughter will soon be fighting fit. A friend of ours was diagnosed with CD in his late 30's. Took a bit of getting used to but is now a way of life. There's loads of products around, think he gets a prescription for gluten free flour which is quite expensive I think. Our local pub also has CD menu. Best wishes to you all. Quote Link to comment Share on other sites More sharing options...
Guest Posted April 12, 2008 Share Posted April 12, 2008 hope she is feeling well soon narnia. we have a couple of children in PG with this as others have said it is a way of life . sue Quote Link to comment Share on other sites More sharing options...
Guest Posted April 12, 2008 Share Posted April 12, 2008 Hi, just wanted to say hope she feels better soon. My dad is coeliac and eats a gluten free diet. he gets bread on prescription and eats relatively normally. theres loads of GF stuff available now (biscuits, pasta and stuff that were not available when he was younger) We ate the same food and even scoffed his toast! My sister now only eats GF stuff and she's not coeliac. Fingers crossed for her! let us know how she gets on xx Quote Link to comment Share on other sites More sharing options...
luluj Posted April 13, 2008 Share Posted April 13, 2008 Just to say thinking of you all.luluj Quote Link to comment Share on other sites More sharing options...
narnia Posted April 14, 2008 Author Share Posted April 14, 2008 update: poor little love has now the worst case of diarrhoea i have ever seen...................and has lost a further 2lbs in weight since Friday, so is back in hospital and is rather poorly.Blood tests still not back so we wait, but thankyou for all your good wishes xx Quote Link to comment Share on other sites More sharing options...
Marion Posted April 14, 2008 Share Posted April 14, 2008 So sorry she is having such a terrible time you must be dreadfully worried. Hope test results are soon back and she's getting the treatment needed. x Quote Link to comment Share on other sites More sharing options...
Susan Posted April 14, 2008 Share Posted April 14, 2008 Hugs narnia! Quote Link to comment Share on other sites More sharing options...
Shiny Posted April 14, 2008 Share Posted April 14, 2008 Sorry to here that narnia. I too am sending hugs. Quote Link to comment Share on other sites More sharing options...
Deb Posted April 14, 2008 Share Posted April 14, 2008 Sorry to hear that Narnia, hope the test results come back quickly and your little grandaughter is soon back to good health. Sending best wishes to you all. Quote Link to comment Share on other sites More sharing options...
narnia Posted April 15, 2008 Author Share Posted April 15, 2008 Finally, an answer! It IS coeliac disease, so now more tests including an endoscopy to take a sample of her stomach lining,which will happen in two weeks' time (they want to let her system calm down a bit before she has it done).My son is really worried now about this, as I had one a while back and it (literally) almost killed me, so he asked me what he should do..............and i had to say they should go ahead, but ask the docs doing it how experienced they are, especially with small children.I am SO relieved it's 'only'coeliac...........we can sort that!! Thankyou all for you kind words and wishes.xx Quote Link to comment Share on other sites More sharing options...
Susan Posted April 15, 2008 Share Posted April 15, 2008 Good luck and best wishes to you all, narnia. You're going to be on a steep learning curve now but at least you know what you're dealing with and will get expert help. Hope your grand daughter begins to feel better soon. Quote Link to comment Share on other sites More sharing options...
Shiny Posted April 15, 2008 Share Posted April 15, 2008 Good luck narnia. Hope everything goes well and glad you have a diagnosis now. Quote Link to comment Share on other sites More sharing options...
HappyMaz Posted April 15, 2008 Share Posted April 15, 2008 It is scary when your children have to have 'procedures' done - and when they look at you as if to say "why are you letting them do this to me?" its just awful... At least you know what you're dealing with - and once this awful stage is out of the way you can begin to get back to normal. Even if 'normal' will be slightly different now. Thinking of you all Maz x Quote Link to comment Share on other sites More sharing options...
hali Posted April 16, 2008 Share Posted April 16, 2008 oh bless hope all goes well - take care of yourself too Quote Link to comment Share on other sites More sharing options...
Sue R Posted April 16, 2008 Share Posted April 16, 2008 Hugs, Sue - you know where I am......... xx (on the road..) Quote Link to comment Share on other sites More sharing options...
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