kids with coeliac disease
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Topic: kids with coeliac disease
Posted By: LJsmum
Subject: kids with coeliac disease
Date Posted: 22 January 2011 at 9:05am
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Anyone have coeliac disease or your child?
DS1 had a blood test the other day as he has been low in iron and lacking energy. they checked his iron levels and did a coeliac screen as well. The results came back and the GP said he has Coeliac disease. He will be refered to a specialist and will need a bisopy of his small intestine under general anasthestic. That is what is concerning me, that he needs to have a biopsy. So my question is has your child had a biopsy ? Is the blood test not that conclusive? Any problems you have faced switching your child to a gluten free diet.? i'm not too worried about changing him to a gluten free diet as i know there are heaps of products avalible now and info e.t.c i'm just really worried about the biopsy   -------------  
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Replies:
Posted By: Zaylah
Date Posted: 22 January 2011 at 9:35am
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Can't help but wanted to give you some big *hugs*.
It's very scary having your wee ones have procedures done - and you're doing the right thing! Research/talk to others and then decide what to do - you'll feel a lot more comfortable with what needs to be done that way  ------------- http://lilypie.com" rel="nofollow"> 
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Posted By: Hopes
Date Posted: 22 January 2011 at 9:48am
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My little sister had a biopsy done recently. She's older than your son (10) but she was totally fine. She was in hospital when it was done (staying while they could work out what was wrong, I dont' know how long they stay if they're just having the biopsy) but her main concern was how bored she was getting in bed with not much to do. So hopefully it's as good for your son too. -------------   
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Posted By: pudgy
Date Posted: 22 January 2011 at 10:55am
 Hugs hun
I have Coeliacs myself. They need the biopsy to ''officially'' diagnose Coeliacs. From my understanding the blood tests are quite conclusive but they still need to do the biospy to confirm. It's quite a quick procedure and means you will qualify for prescriptions of GF flour/pasta etc from your GP. The specialist you see will go through the procedure step by step with you before it happens and they'll answer any questions you have. I agree with Zaylah do some research and write down any questions/concerns you have. Check out www.mfd.co.nz - MFD It gives lists of ''normal'' food that's GF. Do make sure though that you don't take gluten out of his diet before the biopsy. I can affect the results.
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Posted By: Mucky_Tiger
Date Posted: 22 January 2011 at 11:02am
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my friends daughther just had the biopsy at the end of last year. at 20months old i tihnk.
they did a GA and put the tube down their throat thru thier stomach and go inot the intestine do the biospy and pull it all out. her surgery was 1/2 and hour long and within 2hrs she was running around the kids ward
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Posted By: LJsmum
Date Posted: 22 January 2011 at 11:20am
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thanks for the replies
i'm starting to feel a bit better about the whole thing. I was in shock yesterday afternoon when the doctor said he has it, just wasn't prepared and then to hear he had to have a biospy. thanks for that link pudgy -------------
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Posted By: fire_engine
Date Posted: 22 January 2011 at 1:59pm
I have 2 sisters with it. One of them has 1 child with a definitive diagnosis (+ve bloods and biopsy) and one who is a "watch and wait" (+ve blood and -ve biopsy). Because she had coeliacs herself, switching wasn't too hard. Also, her DD had wicked stomach cramps etc that resolved really quickly after going GF so that made it easier for the DD to comply with the GF diet. She's 13 now (was about 9 when diagnosed) and manages her own diet really confidently. She takes all her own food to school camps and my sister sends GF stuff along for birthday parties. The only negative she's faced is that she has recently been a victim of bullying ( at teenage girls) who were hassling her about not being able to eat "normal" food which she found really upsetting.
With the son who is +ve bloods and -ve biopsy, he is continuing to eat a normal diet and if he becomes symptomatic, they'll redo the biopsy. ------------- Mum to two wee boys |
Posted By: busymum
Date Posted: 22 January 2011 at 9:24pm
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I don't know anyone who has had a positive blood test and then a negative biopsy but once you have the formal biopsy diagnosis he will be eligible for Government subsidies (even into adulthood) to help with his diet. The hardest part about having a biopsy, I think, is that you have to keep him on gluten until then. Hopefully you don't have to wait. I know a 6yo who recently had the same biopsy. She was unconscious for the whole thing and had no idea what the procedure would entail. When she woke up, her mum was right there and she (the kid) pointed at an IV line in her arm/hand and said "Look what they did, Mummy!". That's all she knew. -------------  |
Posted By: Muz
Date Posted: 22 January 2011 at 9:40pm
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My DD7 was diagnosed (via biopsy) at age 5, after chronic excema sent me hunting in desperation for answers - honestly I never thought it would be coeliac, but her blood tests were very convincing so we went ahead and had the biopsy done to confirm.
We had some friends who thought it was 'mean and unnecessary' to put her thru surgery when if we just kept her GF it wouldnt matter, but in my mind I had to know if she needed to be strictly GF where contamination mattered or not so strict where seperate toasters etc werent needed. We went privately for the biopsy to shorten the waiting time - and she was completely fine (although she had had 3xgrommets and 1xthumb surgery previously so she wasnt phased) The surgeon could tell straight away that it was likely to be positive because he could see the damage - but official results took a few weeks, she has been GF since the biopsy. It has been a real challenge socially for her - but we are getting there! Good luck with your journey - there is a very supportive FB page called 'coeliac disease - new zealand' ------------- http://lilypie.com"> 
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Posted By: HuntersMama
Date Posted: 23 January 2011 at 8:33am
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DS had a blood test which showed and allergy to wheat, but Im not sure what the blood test for coeliacs is?
The biopsy does sound scary, but people I know that have had it said it is fine even under sedation - they were 20 years + though so no GA. ------------- http://lilypie.com"> 
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Posted By: MrsMojo
Date Posted: 23 January 2011 at 8:19pm
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I have coeliacs and so does my mum, aunty, niece and nephew. My niece was 3yo when she was diagnosed and my nephew was 5yo. We were all diagnosed within 12 months of each other and tbh i think the children found the switch easier than the adults. Partly because they probably didn't remember what they were missing and also imo because children are far more in tune with their bodies than adults and tend to prefer foods that don't hurt them anyway (certainly looking back now I realise most of the foods i hated as a child were things like cakes, muffins, crumbed or battered fish etc - all bad for a coeliac). My niece once commented to her mum that she likes being coeliac because her lunches are always nicer than the other kids. The one thing she finds hard though is having to take her own food to birthday parties. The main bonus of getting diagnosed properly is a prescription for GF food and a child disability allowance (which I understand is not means tested for the first child but you may need to check that). -------------  
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Posted By: NewPhoenix
Date Posted: 23 January 2011 at 10:02pm
depending on where you are you can take him for a treat of Gluten Free Fish and chips at Royal oak and a run around one tree hill after too. 
I go there whenever I'm over that way, and yes, i did beg various people to go get me a crab stick and pineapple fritter when pregnant for me from the north shore. 
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Posted By: pudgy
Date Posted: 24 January 2011 at 11:20am
*gasp* they do GF crab sticks ???? Must get out there sometime soon |
NewPhoenix wrote:Posted By: NewPhoenix
Date Posted: 24 January 2011 at 1:28pm
yeah i was pretty excited when i found out haha. |