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

[Wordsmith]

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.

That's good news about the chocolate! Now another query - any idea where I can get a good gluten free birthday cake, or a good recipe for one? It's DS2's 4th birthday in early April and I'd like him to have a nice cake, preferably with Sportacus pictured on it!

Have sent him into nursery today with a bag of food - he seemed quite excited about having his own special food at nursery, so we'll have to see how it goes. I'm stricken with tonsilitis myself so have cried off work and am off to bed with a lemsip and the sunday papers....

Aww-hope you feel better soon!

I have just had the birthday cake problem-I did find some companies on the net that do ready-made cakes to order but they are hugely expensive! (I mean about £80.00!!)
I ended up making one with a couple of those gluten free mixes-the ds ones- and decorating it myself.
I would be interested if anyone else has found a more reasonable company that makes them though!

Buying gf cakes is horrendously expensive. The easiest way to produce the cake is to substitute Dove's Farm Plain Flour into a reliable recipe (like Delia Smith) - it always works though you do have to add a little more liquid sometimes to get the right texture. There's a Sportacus template here: www.nickjr.com/food/cake_finder/lazy_sportacus_cake.jhtml
which you could use for the whole cake - or just to put the face on the icing.

You can also buy cake toppers: www.picturethatcake.com/shop/index.php?main_page=product_info&products_id=190

but I don't know their glutenfree status. "cake toppers are Edible cake decorations, they are thin flat sheets of real icing, printed onto using food grade edible inks with your own picture or photo or a design that we provide" Having found the ingredients www.picturethatcake.com/shop/index.php?main_page=page&id=5&chapter=0

you are better making your own from the template!

Or you could do what my friend does. She ices the cake and then prints in a circle whatever her daughter wants - puts that on the cake and removes it prior to eating. Very quick, cheap, versatile and easy!

Welcome to the world of glutenfree birthday cakes.

Wow - thanks for all the responses. It'a a minefield out there isn't it? I think we might just be better making him a cake and decorating it with chocolate buttons (please tell me they are safe!!) My mum is quite good at this so I'll try and butter her up.

Do GF cakes taste the same as ordinary ones? It's his big brother's birthday in a couple of weeks as well (bad planning eh?) and I think I'd like to make a GF cake for that so that DS2 can join in without feeling left out - but want DS1's party guests to enjoy it, obviously. We're taking 6 boys (8 year olds - eek!) bowling and then to a nearby eating place - choice of Frankie & Benny's, Pizza Hut or McD's. Have been looking online for their ingredients and am totally stumped - it will probably be McD's because at least DS2 can have the chips....

I guess with childrens parties and eating out is am being thrown straight into the deep end of the GF pool, am I not?

sorry - I meant I guess I am being thrown straight into the deep end... must check typing!

Hi wordsmith. My ds2(7) has been wheat free for about 3 years - back on wheat at moment waiting for hospital appointment for coeliac test.

I think gf cakes do taste different. We have a special big cake we make at birthdays. My children eat it as I think they are used to the gf flour, however all other children at the party leave it! So there's more for us! It feels a little heavier than other cakes. We only use this recipe to make the birthday special. Normally I just use victoria sponge recipe and substitute flour. If you want I can type the other recipe out, but not popular with my son's friends!

Eating out is blardy impossible for ds2... he is very fussy, veggie and wheat free.

Thanks Schilke, am beginning to realise that this aspect of GF is going to be the tricky one. I'm also negotiating nursery and preschool at the same time and have just decided to supply them some food. Feeding him at home is a breeze!

Think I'll just do the normal recipe substituted with GF Flour one. Might have a play this weekend to see how it works out...

I've always made DS a chocolate birthday cake - the first party he had after going gf I didn't mention anything about the cake and one of his friends turned to my son and said, "are you sure you can eat this cake?" They thought it was just a normal chocolate cake. GF cakes are slightly heavier but this is less noticeable with a chocolate cake where often they are heavier than a traditional fluffy white sponge. Good luck worthsmith - let us know how it goes!

sorry wordsmith - my fingers were tripping over themselves there!

Just a thought but could you make little cupcakes instead of one big one and then make a gf one for you lo with the candles in it?? Would be a problem though if your ds ate the wrong one though.

For eating out/take aways we usually use Nandos. The chicken and fries are gluten free and both my coeliac DSs like it!

Flamingtoaster - is that a normal chocolate cake just using GF flour instead of normal flour? That's what I'm planning I think.

Ben'sMum - I did think of the cupcake idea, but he'll be expecting a birthday cake. As luck would have it this will be his first 'proper' birthday party, ie inviting friends to a playzone etc, and it's important for him that I do it 'right'. He's grown up seeing his big brother have these parties and I promised him last year that it would be his turn this year. DS1 isn't having any more big, invite-load-of-kids and cost a fortune parties!

That's the problem having 2 boys whose birthdays are only 2 weeks apart! Like I said before - bad planning!

Tiggi I did wonder about Nandos - I think there's one by the Bowlplex (it's on a big leisure park thing) - if so that would be perfect. I'll check it out.

Many thanks again for all your help - I don't know where I'd be without Mumsnet!

Yes it's a normal chocolate cake recipe using Dove's Farm flour. You really couldn't tell the difference (until DS developed egg intolerance so now I have to make it egg free as well which does change the texture to a much more "grown up" version).

Thanks goodness we only have to worry about gluten (fingers crossed!)
That sounds lovely FT. Am just logging onto Ocado now and will add it to my basket!!
Tiggi - have checked out Nandos and it looks good. We're going to have a 'dry run' on Saturday to check it out!

just a quick one from me....M&S now do a gluten free cherry and chocolate cake. It isn't too cherryish, and is just lush. You wouldn't know it was GF at all.

i think they do a fruit cake in the range as well, but not sure.

I wasn't a big baker before DD1 was diagnosed - we always had shop-bought cakes for birthdays. But since her 3rd birthday, we've always had GF cakes and they always go down really well - no-one seems to notice the difference. To make a Victoria Sponge I use either one of the Juvela mixes we get on prescription or the Doves Farm Flour but our favourite is the Dietary Specials Chocolate cake mix...I've seen it in Sainsburys and Tescos.

DD1 was invited to a McD's birthday party last year and I was a bit dubious about her going tbh. But I rang them and they said that not only could she have the chips (always fried in their own oil, no risk of contamination) but she could have a plain burger as well - they would make sure the person assembling them changed gloves to avoid contamination. So I took one of her buns (juvela do some nice part-baked ones you can get on prescription) and she had her burger in that.

I'm not a big fan of Easter eggs - too much temptation for me . I tend to get them a small kinnerton egg each. Last year Sainsburys did their own GF egg, but it was dark chocolate - not DD1's favourite. Green and Black's are fine if you want to push the boat out, as are Thornton's I think.

here's the link to the list flamingtoaster mentioned - v. useful .

Thanks for putting up the link tkband3.

I understand Wordsmith, poor little one just wants a normal birthday cake!! For future years though you could make a caterpiller of cupcakes or snake and make the one that makes the head his special one perhaps. I've seen that the fashion for wedding cakes is to do individual cupcakes atm!!

I am going to go to M&S though to find the cherry choc cake for myself, it sounds yummy!!

Well we weighed DS2 last night and he seems to have put on about half a kilo in one week! Not sure whether to believe our bathroom scales but if so it seems the diet may be working!

Great news - long may it continue!

You will be amazed at how they change wordsmith! My ds was weighed yesterday and had put on about 12 pounds since the beginning of his diet in early December-and grown by an amazing 4cm!