Coeliac disease help

[Fourducksate]

Hi

Due to off the scale blood tests for Celiac Disease, dd had a biopsy yesterday. Although we haven't got official results, the consultant said the intestines were inflamed and showing a reaction to 'something', as was the stomach which was very sore all of which he would expect with CD.

He did say, we shouldn't change her diet until we have the lab results in 7-10 days and in the meantime he has prescribed Omeprazole every day and she will need this for the next 3-6 months to heal things.

Firstly, I am feeling a bit overwhelmed by it all and wondering how we will manage it. Secondly taking something a drug daily for such a long period, worries me. I should have asked at the time, but wanted to get dd home!

I am also very tempted to start reducing gluten now, if it is such a problem. Dd is happily munching Pringles at the moment - she is off because of having a general anaesthetic yesterday - and I keep thinking the Pringles will counteract the medication!

Sorry for the long post, any experiences of this, is this normal procedure?

Finally, we have been asked to take part in some international research for diagnosing Celiac Disease, that will require blood testing every 3 - 6 months. We said yes so they can use the biopsy sample and bloods, but am now thinking maybe this isn't fair on dd. WWYD?

Thanks for updating us FourDucks - so glad it is going so well.

FWIW, DS1 was also a Marsh 3c. He was diagnosed 18 months ago and hasn't yet had a completely clear blood test, although the last one a few months ago was very low, so hopefully the next one (just after Christmas) will be clear. The consultant said at the time that with that level of damage she would expect it to take up to 2 years for complete recovery.

It is very hard entrusting them to other people, especially when there is a level of decision making involved. I recently sent DS on a playdate with a friend at a local playcentre - they were having tea there. I rang the playcentre in advance and told the mum that the chips were gf. Fortunately she double-checked at the counter, and found that I'd been given the wrong info and they were in the same fryer as breaded items. Another mum who was less switched on might not have got that information.

It will be great when my DSs (they are both coeliac) are old enough to read labels and make safe decisions themselves, and not have to rely on other adults! At least I know that day will come.

Just a warning - generally the longer you've been gf, the worse the reaction to accidental glutening. So although your DD didn't react too badly to the slip-up over the snacks this time, she might in the future. But she will also be more experienced and less likely to forget.

And re: the xanthem gum - depends what flour you use - I know Dove's Farm flour has xanthem gum in it already so no need to add.

Hop skip. Thank you for the info. I didn't realise it would be so long before she healed. Scary isn't it. At least she is old enough to know what is safe and I thought was confident enough to speak up, it must be so difficult with a little one.

At school they had some GF pasta for her, but the cooks picked it up with the same utensils as the normal stuff, including their gloved hands. Dd noticed and was horrified, although she didn't speak up and just didn't eat it , such a responsibility for a 9 year old.

We had a problem with school this week and they have since been fantastic. One of the dinner supervisors refused her to go to the toilet when she was waiting in line, telling her to wait. A result of which she only just made it and had a slight accident. She sorted herself out, but I noticed straight away at bath time and she told me what happened.

I was actually very cross about it and made a complaint. I think the shit hit the fan at school (no pun intended), as both the school nurse and head have apologised, so I feel happy it won't be allowed to happen again, I hope that isn't her reaction to being gluttened.

Oh I made the sponge cake - thank you for the recipe. It was light, fluffy and delicious, dd really doesn't think she is missing out at the moment which is great. We do have a party on Sunday and I have left a message for the Mum to let me know about the food so I can plan to take things. I just need to find a very very special cup cake for her to have instead of the birthday cake. Any suggestions welcome, without me baking again!

The healing is an ongoing process, so there is constant improvement - or that's what we've found, anyway.

Your DD did really well to notice about the pasta and not eat it - also to tell you. I think speaking up in that situation would be really tough for a child - and for an adult, quite often, too. But she did the right thing not eating it, well done her.

We actually paid for the head of the cooking team at the school to go on an online Coeliac UK training course - it cost about £40 and it seemed to be really worthwhile - it is aimed at caterers and has lots of info about how to avoid cross-contamination, so I think if you can afford that, it might be worth considering it for your school. (Ideally the school should pay for it IMO, esp if they are making mistakes, but that's a tougher battle to fight!)

Special cupcakes are a tricky thing. I'm lucky because at the moment, my DSs aren't too bothered about cakes at parties - I always send them with a chocolate treat and a plain cake. It's quite hard to find pretty iced cakes that are gf. If you can find some online, you could buy and keep them in the freezer. Honeybuns and The Gluten Free Kitchen in Leyburn are worth taking a look at. Or you could buy plain gf cupcakes (or make a batch and freeze them) and decorate them yourself - the Coeliac UK directory will tell you which ready-to-roll or spray icing is safe. I buy Anniversary House Sugarcraft decorations to go on cupcakes - they always have fun seasonal ones and my kids love them. They are gf (although they contain rather a lot of E numbers, but there you go.)

It is a pain always having to think of things ahead of time and make them, but you do get used to it. I am the world's least domestic person and I now make quite a bit of stuff, and its not too time consuming once you've got into the flow of it.