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Allergies and intolerances

Positive coeliac test - what can we expect now? (Loads of questions - sorry!)

96 replies

Wordsmith · 17/02/2008 21:48

DS (3.10) has had a positive result from his blood tests - TTG(?) levels of 128 when in a normal person they would be under 10. We're now waiting for an appointment for a biopsy - although the paed is 110% convinced it's coealiacs with a reading like that.

Has anyone's child had the biopsy/endoscopy? What can we expect? Do they knock the child out? What's the difference between general anaesthetic and sedation? How would a 3 yr old react to that? I'd really value hearing others' experiences, I'm dreading it on behalf of poor DS.

He'll be starting school in Sept and before then goes to day nursery and pre-school. Does anyone have experience of discussing coeliacs with schools/nurseries and how helpful were they (although I imagine it varies from place to place... just grasping at straws here).

I've ordered some booklets from Coeliac UK website - are there any other good website/forums I should be looking at?

Any advice/comments would be really gratefully received. Thanks.

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avenanap · 17/02/2008 21:56

I've had this done. They will sedate ds, it's like a general anaesthetic, will make her sleep but will not need ventilating. Depending on what they sedate her with and if she was calm when she was sedated, she might wake up nice and sleepy. Ba aware though that some children scream, kick, fight and punch when they wake up if they go to sleep anxious. You won't be there when they do it. You may be allowed into the anaesthetic room while she goes to sleep. They'll bring her back to you when she wakes up. I don't know about the diet and school. They are normally careful if you give them a list of don feed's. You could also ask the school nurse to go in and educate the staff about your daughters condition.

Sciolist · 18/02/2008 12:45

Ds has the biopsy at age 12 (but turned out not to be coeliac, unlike me). I am certain he had a general anaesthetic - they said sedation was only for adults. He sailed through it, and was still counting up to 10 when he woke up. The surgeon and anaesthetist were both very friendly, hugely experienced and specialised in children.

A GA knocks you out compeletely; I had sedation, but I am not sure what the technical difference is.

Another web site is

I am sure you will get to see a dietician for advise on feeding DS. The coeliac diet is a constant irritation because you have to be aware of it 100% of the time. The hardest thing is eating out - you will have to be careful of childrens parties, as well as nursery/school food. However the advantage is that you will have a healthy son!

tkband3 · 18/02/2008 14:38

Hi Wordsmith

DD1 was diagnosed with coeliac at 2.8. I'm not sure what her TTG levels were but she had an endoscopy to confirm the diagnosis. I think with children they prefer to do these under general anaesthetic. I was a mess frankly - I started crying when the (extremely gentle and nice) anaesthetist started to tell us what was going to happen. Fortunately DP was there and when we actually went in for the procedure, he held DD1 on his lap, reading her a story while the anaesthetist held the mask under her nose till she was knocked out, which only took a few seconds. To warn you, they go extremely floppy once they're under, which I found quite scarey.

When she woke up, she was extremely distressed and disoriented and this lasted about half an hour. Once she was fully awake, she was fine, hungry (she hadn't eaten since the day before because of the GA) and watching videos. We saw a dietician in the hospital that afternoon, who gave us her initial prescription and the consultant said she was almost certain that coeliac was confirmed, but that she would phone to let us know within 2 days, once the tests had been done on the biopsy. We were home by teatime.

We started her gluten-free diet the next day and within 2 weeks she was a transformed child. Her complexion, which had been grey, was now pink and healthy-looking, she was no longer constipated, she had energy and most importantly, she ate! It used to make me cry to see her shovelling food in, as it had always been such a struggle to get her to eat anything before.

In the first year she gained over 3kg (over 30% of her weight at diagnosis) and grew 12cm! Following the gluten-free diet has not been nearly as difficult as I anticipated. You get quite a lot on prescription - bread, biscuits, pasta, pizza bases etc - and all the supermarkets do brilliant free-from ranges now (Sainsburys is our favourite). You will need to ask your DS's pre-school to make gluten-free playdough - they probably make it themselves anyway, and it's no harder, just different ingredients. There's a recipe for it on the coeliac website. Also, if they give the children a snack, you will need to provide gluten-free biscuits for him. I always used to find out in advance if they were planning any cookery sessions and provide gluten-free flour or cake mixes (which you can get on prescription). In the end, pretty much all the cooking they did at DD1's pre-school was gluten-free. Occasionally, they would make sandwiches and I would send in her bread and butter etc so she could do her own.

One thing which came as a surprise to me was the need for a second toaster, separate baking tray, separate butter, marmite, jam etc - a crumb of 'normal' food can cause a reaction so you need to keep things separate. But even this has not caused as much difficulty as I thought. If DD1 is invited to a party, I try to find out in advance what sort of food they are having and give her a little picnic of something similar and always take one of her cakes (the Sainsburys g-f brownies are gorgeous) so she can have that instead of birthday cake. I always bake her birthdays cakes (which my family now prefer!).

I have rambled and rambled , I hope there is some helpful info in there. Please don't despair, your son will soon be healthy and well. If there is anything else you need to know, don't hesitate to ask - if you'd like to email me I'll give you my address.

tkband3 · 18/02/2008 14:40

Sorry - that was really long! But I forgot to say, now she is at school, she has a packed lunch every day. The bread is not great, but we toast it and she is completely used to it now. The pitta breads make good sandwiches too.

Wordsmith · 19/02/2008 07:47

Sorry about the silence - have been v busy! Thanks so much for all your answers - it's really helpful. And it's especially great when you "ramble on"! So many thanks.
Saw the dietician yesterday, she gave us some GF samples and tons of leaflets. DS likes the shortbread biscuits! But we can't get any more stuff on prescription until he's 'officially' diagnosed. Any more hints and tips v gratefully received.

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tkband3 · 19/02/2008 08:43

Hope I'm not repeating something you've already been told, but please don't put your DS on a GF diet till after the biopsy. It could give a false diagnosis. It's horrid continuing to feed your child food that you know is bad for them and causing them pain, but hopefully, given his dramatic blood test result you shouldn't have to wait too long for the appointment.

Sorry if you already know this, but the fact that your dietician gave you samples yesterday worried me a little.

Wordsmith · 19/02/2008 21:08

Hi TK, thanks for the message - sorry to take so long to reply, I have been away from the computer all day. re your concerns about the GF samples, she just gave us a bit of pasta, biscuits and flour to 'have a play with' before the biopsy - she said deifinitely not to go GF before then. It's going to be so hard to break DS's new coco pops and couscous habit (not together I hasten to add but they're his favourite foods at the mo) that I'm not going to cause more grief before I need to.

Thanks for your experiences about the biopsy - this has been really worrying me as I don't want DS to be aware at all what is going on. He knows he's going to have to go back into hospital, I've told him it's a different hospital but as long as they have toys there he'll be quite happy. He likes the children's outpatients at our local hospital and the biopsy will be at Bham Childrens Hospital.

Like you say I can't wait to see him well and happy again. he's been so miserable and irritable for so long we were beginning to wonder if it was a personality trait. I feel really guilty that it took us so long to realise there was something wrong with him, rather than just putting his irritability and loss of appetite down to a phase he was going through.

Once he's had the biospy results I'll arrange a meeting with the day nursery and preschool managers and see what they can do to help. I don't want him to feel that he's missing out.

Sciolist - thanks for the link, I'll take a look at the site.

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tkband3 · 19/02/2008 21:58

I got a book out of the library - an usborne one about going to the hospital. The story is about a little boy going to hospital for an operation on his ear, but the premise of the GA and general hospital stuff is useful. It became DD1's favourite book for a while! this is it.

Oh and you can get gluten-free cocopops, or a version of them - I've seen them in Sainsburys and Waitrose. Also Doves Farm do chocolate stars which are quite popular in this house, with coeliacs and non-coeliacs alike!

Hope you get the biopsy appt through asap.

SalVolatile · 19/02/2008 22:39

Hi everyone - can you tell me what the symptoms in a child are,please? I have a dc4 who is failing to thrive and always 'feels ill' and granny is a coeliac.

Wordsmith · 19/02/2008 22:53

Ooh TKB you are my new online best friend! Will search out the cocopops alternatives when we do start the diet.

Sal - symptoms include weight loss, loss of appetite, feeling ill and tired all the time, irritability and moodiness, pale appearance, bloated stomach, wasted arms and legs.

Trouble is loss of appetite and moodiness can be quite 'normal' in kids and we just put it down to his temperament for ages! We thought the weight loss was due to his failure to eat, which we thought was due to bloody-mindedness on his part - and we used to get quite angry with him. Now feel very ashamed of that . It took a trip to the docs - when he'd been 'not right' for at least 2 months ( again!)- to check that everything was OK (thinking it would be and it was just us being over-anxious) to make us realise things were wrong. In just over 1 yr he had gone from being on the 50th centile in weight to being on the lower edge of the 5th. I was shocked to discover looking at his red book that at 3yrs 9 mnths he was the same weight he'd been at 2 and a half. (After they pass the baby stage you don't bother weighing them so much do you). The doc said crossing centiles like that was always a cause for concern and referred us to the paediatrician.

The paed said it was also a genetic condition so if your gran was a coeliac I would get him tested pronto.

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Tiggiwinkle · 19/02/2008 23:26

Wordsmith-my DS5 was diagnosed coeliac in early December. He is 9 (birthday last week!). He had his biopsy done under a general anaesthetic and the hospital staff were all fantastic. He felt a bit funny for about 30 minutes after coming round, but after that he was fine. The difference in him has been amazing-as Tk says about her DD, their complexion visibly improves and my DS has so much more energy. He has already put on weight and grown 2cm taller and he has only been on the diet for a couple of months. In his case his diet pre-diagnosis was almost entirely made up of gluten-rich foods-he has Asperger's Sybdrome and has a very restricted diet which consisted mainly of cereals and biscuits.
By the way, Cocopops are an "allowed" food according to the coeliacs society directory-they contain malt extract but it is at such a level that it is tolerated by most coeliacs (complies with Codex standard).
My eldest DS, who is in his twenties, is also coeliac, so now I have two to cater for!

Tiggiwinkle · 19/02/2008 23:35

SV-if you have someone in the family with coeliacs your DC should definitely be tested. I was advised to get my children tested after my DS1 was diagnosed 3 years ago. DS5 was negative at the time but he was tested again a few months ago and the result this time was positive. The symptoms in children can be loose stools (although my two were more prone to constipation with some bleeding); poor weight gain; lack of energy; anaemia; irritability; and generally feeling unwell.

Wordsmith · 20/02/2008 07:55

That's good to hear Tiggi - especially about the coco pops!

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Wordsmith · 26/02/2008 21:38

OK so have had a date for the biopsy - it's this Thursday, thanks to DH for nagging the hospital to bring it forwards.

Am now starting to feel a bit jittery and feeble - hope I can hold it together for DS. His big brother's going to my mum's tomorrow night for a sleepover and she'll have him for the day, so at least we won't have to worry about him on top of everything else.

They've said DS will be having a general anasthetic and I'm sure he'll be fine but still can't wait till it's over and we can start him on a GF diet. We tried the pasta last weekend - he loved it. Am stocking up on stuff in anticipation.

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tkband3 · 26/02/2008 22:08

Good luck for Thursday...fantastic that they're getting it done so soon so that you can start getting your DS feeling well again. Hope all goes well - have you managed to track down that book?

Will be thinking of you. Let us know how you get on.

Wordsmith · 27/02/2008 22:03

Thanks tkb. Haven't tracked down the book but it does look good. To be honest I think the most difficult thing is going to be making him go without his milk when he wakes up tomrrow morning!

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BenFMsmum · 27/02/2008 22:07

Hi! Try they do some lovely stuff almost all tried and tested by me!!

tkband3 · 27/02/2008 22:21

That was my worst fear with DD1 as well! She did kick off a bit, but we left it till the absolute last minute to wake her up and literally got her up, dressed and into the car. Within a relatively short space of time, she was fine and happy to be going on a trip with just mummy and daddy (and not her twin sisters!).

Probably too late for you now, but best of luck tomorrow.

Oh and BenFMsmum - saw your recommendation on another thread and have ordered some stuff for DD1 off that site. It looks great.

beckystaffs · 27/02/2008 22:22

My dd1 is a coeliac diagnosed at 2.3. As Tkb describes, although really scary for mum and dad my little one has probably forgotton all about it now (3.5). did they tell you about spoons, - apparenntly wooden ones absorb gluten so they recommed using metal ones instead!

tatt · 27/02/2008 22:23

good luck for tomorrow. No experience of biopsies to share but you may like to have some gluten free food for when they wake up. It sounds as though starting the new diet straight away would give you a changed child and hospitals aren't good about special diets.

BenFMsmum · 27/02/2008 22:28

Hi tkband3, the stuff is good and most can be frozen. I find it especially good at christmas and for parties etc. It was the best tasting toast I'd had in a long time!!

Wordsmith · 28/02/2008 19:56

Hi Everyone, thanks for your messages of support. The biopsy was fine, and DS2 came through unscathed. He did kick off a bit about not having his milk in the morning and both DH and I went without our cup of tea as well in solidarity, which was hard I can tell you! I'm not good in the morning until I've had my cuppa.

He didn't much like the gel they put on his hand to numb it before the cannula was put in, and started getting a bit upset while we were waiting in the day ward. I gave him a cuddle and he fell asleep, so they actually had to wake him up to take him up to theatre!

The anaesthetic was fine and I managed to hold it together until he was asleep and them I'm afraid it was all a bit too much and I burst into tears!

40 mins later he was back on the ward and within half an hour was well enough to drink and eat - and he wolfed down a cup of milk and 2 bowls of rice krispies, followed by a packet of crisps and a biscuit. A couple of hours later they let us go home and he's been fine since.

He's looking forward to his gluten free choc stars for breakfast tomorrow and I'm looking forward to him getting better! I know it's not all going to be plain sailing but I just want to say thanks for all the advice and tips I have received on this thread, it's really helped put my mind at rest and realise we will cope!

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Sciolist · 29/02/2008 12:19

Wordsmith, please keep us updated on progress and the test results. I am really pleased it went well, and I hope DS2;'s health starts to improve soon.

3andnomore · 29/02/2008 12:28

Just read Wordssmith discription of I am a bit worried.
MS had a Paed appoinmenty yesterday because of constipation, and as he is now 5 and still soiling and stuff, we were referred.
Well, he had a bloodtest, and one test done will be to rule out coeliacs...but some of those symptoms desciped due really discribe my son...
ah well...wait and see is all we can do...

flamingtoaster · 29/02/2008 12:38

Just seen this thread - glad the biopsy went OK. tkband3 has given you excellent advice. I'll just add a couple of things. You'll get a lot of help here:

On the supplementary board attached to the main board you will find lots of ideas, recipes, summaries of research etc.

I have found it easier to convert all baking to glutenfree rather than worry about cleaning the oven if gluten containing pizzas etc. were baked in it. You will get prescriptions - but Dove's Farm Glutenfree Flour (in Tesco and Sainsbury's etc.) can be substituted directly into most recipes with sometimes just a little extra liquid. All main meals are cooked glutenfree (thicken gravies etc. with cornflour etc.) which saves a lot of time. To avoid cross contamination when you get to the making lunches stage I will state the obvious (sorry!) but prepare the glutenfree packed lunch before you get anything which contains gluten out. Also wash hands between touching anything with gluten and anything glutenfree because as tkband3 has said even a crumb or two can set off a reaction.

Other than that just get in plenty of food - you will not believe how much food your DS will get through once he starts feeling better. Try not to buy too many new clothes over the next few months - he will grow like a rocket once he starts eating properly! Enjoy watching the recovery process - it is fast and spectacular!

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