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.

I am beginning to be amazed Tiggi - he's such a happy little chap now, bouncing around all over the place. And his face is looking a lot chubbier than it did. It's been worth all the hassle!

Right about to try making my first GF loaf in the breadmaker. I have the Doves Farm bread flour so will let you know how we get on. We fed some of the shop-bought GF bread to the ducks yesterday and I had a taste. Of all the GF stuff we've bought this was by far the worst! So hopefully home made will be better.

The Gluten free sausages from Ocado/Waitrose are nice though and the Tescos fish fingers went down a treat.

It is amazing the difference in mood that the gf diet makes - I thought my DS's moods were because he had just turned into a teenager - but once gf he went back to his sunny, happy self. Stand by for the growth spurt before long - you can almost see them growing once they start!

Good luck with the breadmaker - a lot of the bought/prescribed gf bread does have a strange taste and people reckon home made has the best taste and texture. As far as bought/prescribed goes we found Ener-G White Rice Bread (not the GL Loaf available in Tesco) made the nicest toast for us - but some people hate it - it is a personal thing. There are "fresh" gf bread which can be prescribed but they are ordered in bulk (8 loaves) and seven loaves would then have to be frozen. Have you contacted all the manufacturers asking for sample packs so you can try lots of the pizza bases etc. so help decide what your DS likes? Other people recommend the Orgran bread mix but I haven't tried that.

Thanks for the tips FT. I'll hold off buying him any new clothes for a while!

Well the GF bread is baking away. I must admit it seemed a strange recipe compared to the 'normal' one I use. Have never put vinegar in bread before and am not quite sure I've got it right - all we have is malt vinegar - I presume that's OK? I have just had a look through the little window and it seems to be doing OK but it does have another 2 hours to go. I've made a medium sized loaf but my machine only has settings for small and large so I've chosen large, as judging by the amount of ingredients it will be large - but I guess this first one is a sort of 'suck it and see' try-out.

Good luck with the bread! CUK states that most coeliacs are OK with malt vinegar - however I know some who aren't. It is recognized there is a significant sub-group of coeliacs who are super-sensitive and react to extremely small amounts of gluten. Don't worry about it this time your DS will be fine, but given his recovery is just underway I would switch to white wine vinegar from Tesco next time.

Don't worry if you get a brick first time (most of us have at least one brick in our past!) - post on the www.members2.boardhost.com/glutenfree board saying what happened as loads of people have made that loaf successfully with a little help from the board.

Well the bread worked - amazingly. DS2 likes it anyway which is the main thing. It's a lot nicer than the shop bought stuff anyway so I'll do it again. White wine vinegar has gone on the shopping list.
Birthday cake is the next thing to crack - although goodness knows when I'll get round to that! I think I'll give the task to my mum.

Great news about the bread - well done Glad DS likes it.

My son was diagnosed coeliac when he was 22 months and he is now 9 nearly 10. I've always used Juvela Gluten free Mix for bread made first manually and then, for the last six years, in a bread maker. I just use the recipe on the back of the packet but use olive oil instead of vegetable oil and add a level teaspoon of xanthum gum to it to replace some of the elasticity that is lacking because it doesn;t have gluten in it.

I use Tritamyl flour plus a gluten free baking powder for cakes and generally find them to be lighter and more tastier than normal cakes.

Both juvela mixes and Tritamyl flour is available on prescription.

My son has school dinners and has done so from reception. The school does very well to cater for him and it has become easier to do so over the years because of the greater emphasis on more fresh cooking in the school instead of it being delivered frozen and then cooked.

We're now in the business of him going away on school residential trips. So far the hotels they've stayed in have been very good although I've had to provide bread, biscuits, gravy, pasta, cakes so that he could eat more or less the same as the other children.

I have read this with great interest. My DH is coeliac, so I'll be using a few of the recipes! My DS2 is diabetic, so I really share the good feeling about them growing at last and needing bigger clothes Diabetes is linked to coeliac, so we're watching him carefully.

Hey this has made discussions of the day!

Nikki that's interesting from the long term perspective. I'm not hopeful about school dinners as they buy everything in at DS1's school (which DS2 wil obv. be going to) and are not exactly helpful in any other respect so don't see why dinners should prove any different! It's going quite well at day nursery (after three days anyway so won't speak too soon) where I just provide GF gravy granules/saugages/fish fingers or whatever depending on what they're having for lunch.

He's put on another 0.5 kilos by the way - so that's 1 kilo in one week!

can i ask a quetsion about the TTg levels? Wordsmith - i notice you say your DS had a level of 128. a 'normal' person is under 10. My DD TTg level was 0.001. so low as to be almost unreadable. can anyone offer any explaination? i've looked rather unsuccesfully. The GP just raised his eyebrow. i'm waiting on a referral to the dietitian and in the meantime have taken matters into my own hands and am on day 1 of a gluten free trial.
others experiences would be useful - as are all your suggestions here.

I couldn't really say Nigel - I don't know if there are any other indicators other than TTG. What symptoms is your DD showing?

endless list. nausea and abdo pain. always had a rubbish diet. behaviour/depression stuff. panicy school issues. been going on since last autumn. (and yes i know they could all be due to many other problems).

What about weight loss/failure to gain weight? Does she have a sticky out tummy (pot belly?) Ask for a referral to a paediatrician and they'll do tests. you'll need to have a biospy to be sure, even if the TTG test is as conclusive as my DS's was.(But she'll need to be on a normal diet for it). The GP isn't a specialist.

she's very skinny yet tall. very pale with dull hair. had loads of bloods done - all remarkably normal considering her crap diet. we saw a paed in January - no luck. didn't want to see us again if bloods normal. the jist i got was they wouldn't even consider an endoscopy/biopsy if bloods were normal. not that i want her to go through it but - well you know...
we also saw the CAMHS people - who thought she was fairly normal - although the GP and school nurse both have her down as depressed/mental but i know it's a physical problem causing the mental issues not the other way around. which is why i decided to go it alone as a trial. if it makes no difference with the GF diet then i can cross that one out and if it does then it's all o.k.
sorry - waffle

NaughtyNigel - if your daughter is IGA deficient then her coeliac blood test could be a false negative. It would be worth checking if they did establish whether or not she was IGA deficient. If you look here:

coeliac.info/suppboard/viewtopic.php?t=2314

You will find a bit about IGA deficiency. There is another fuller bit but I can find it at the moment!

Update on the birthday cake scenario - I found a recipe for GF cake and my mum tested it out this weekend - it was fab! Lovely and moist - you would never have known it was GF. I think I got the recipe from the BBC website but it used rice flour. Now she's going to do a bigger cake for DS2's birthday party next week. I've ordered a Fireman Sam cake topper to go with it (from picturethatcake.com - thanks for the link, flamingtoaster!) and hopefully it should be fine. Fingers crossed.

The diet's going really well - he's put on about 1.5 kilos in less than a month and is looking positively chubby - still got a bit of a pot belly but I dare say it will take a while for this to reduce. But a completely different child - happy and smiley and, best of all, constantly hungry!!

Tiggi - we tried Nandos last weekend, it was lovely. None of the kids liked the marinaded chicken strips but they ate the normal chicken with the skin stripped off (the peri peri sauce is only pasted on the the skin)and they loved the chips. DS2 particularly enjoyed the bottomless frozen yogurts. I'd definitely go there again, thought it was all delicious and a really nice ambience.

We've got DS2's follow-up appointment to the biopsy on Thurs too so it will be interesting to see what they say. If they tell me it's NOT Coeliac's I'll eat my gluten-free hat!

They only take a microscopic sample from the gut which is around 6m long - it would have to be quite badly damaged for it to guarantee coeliac result, so don't be surprised even if it's inconclusive.

Yes, the diet transformation can be amazing (and unbelievable).

Wordsmith, so glad your DS is responding so well to the new diet. Even if the results of the biopsy are inconclusive, you know the new diet works .

And thanks to you and flamingtoaster for that link to picturethatcake. DD1 is very good about not being able to have similar cakes to her friends - last year my best friend decorated a gluten-free cake I'd made for her. But she's already very excited about the High School Musical cake she wants for her birthday this year - which isn't till July .

Well the biopsy results were conclusive - he definitely is coeliac. They weighed him and he was 15.43 kg - one month ago to the day he was 13.5 kg!

I'll let you know what the cake looks like when it's assembled - it's not his birthday till April 5th so my mum isn't making the cake till next week. However I ordered the topper online on Monday night and my mum received it in the post (special delivery which I paid extra for) on Wednesday am - so the delivery is certainly good! And according to my mum it looks good too.

Picked up my first batch of prescription food last night from the chemists - anyone used the Glutafin cake/bread mix for making bread? The Doves Farm bread recipe is so good I'm hoping the Glutafin one will be as tasty, cos that's the one we can get for free!

What an amazing weight gain! You must be so pleased to have finally found the answer to your DS's problems.

I've not used the glutafin mix - I'm not great at baking bread. We get the DS sliced white loaf on prescription and DD1 has it toasted - she seems to quite like it that way, although I think she was too young when she was diagnosed to remember the difference. I can heartily recommend the juvela pizza bases which you can get on prescription. They are really good - much better than any others we've tried.

tkb3 - pleased isn't the word, I'm gobsmacked and thrilled. He's a real little chubster again and I have got my happy little chap back.