coeliac and school residential trips

[loobeylou]

anyone have any experience of letting their coeliac dc on residential school trip/brownie camp etc?

ever since dd was diagnosed in reception 3 yrs ago I have been dreading this coming up

at the mo she has packed lunches and takes all her own food to parties, is only allowed to a couple of friends for tea where i know they fully understand GF/contamination issues

we plan our hols around where we can find recommended Gf eateries

I am scared witless about her going am I paranoid, and by the way, she is supersensitive,and has recently has to stop all Gf products with codex in and be Wf too

Lisa

no - but have similar issues since one of my children has serious nut allergy. Residential trips in this country are usually manageable because they stay in places that are used to catering for medical issues. It is wise to phone and speak to the chef personally, especially to discuss lunch as that is often a picnic and may include things like kitcat or penguin biscuits. However they can buy in - or you could send with the child - gluten free bread and cake. I recommend Mrs Crimbles double choc brownies, althought the other children will want to eat them

My child has never gone on a residential with brownies/guides because I wouldn't trust them. They are now doing DofE and there will be several child with food isssues in the group.

For extra comfort on residential trips/ holidays you could get Biocare Glutenzyme plus tablets. These are definitely not a substitute for a gluten free diet but might be of some help if there was accidental contamination.

thanks for reply, i know i am lucky that my dd does not have a serious anaphalactic type allergy, my sister is allergic to peanuts and has to carry and epipen. But I still worry myself sick over her being ill!

what are the tablets you mentioned, not heard of them

they are digestive enzymes that help to digest gluten. They are not effective enough to prevent harm to someone who is coeliac but they could reduce the effect. There are other enzymes being investigated that may one day allow coeliacs to eat a normal diet. Google and you'll find the tablets on several websites, although it may make them sound better than they really are.

My son is in year 11 and has been on two residentials since being put onto a gluten free diet three years ago.He spent a week in Spain, and took all his own breakfast cereals and crackers ,pretsels, cakes and biscuits. His high school were very helpful and shared his food out amongst the teachers, so he didn't have a case full of food but no clothes space, and also in case of any luggage being lost!He supplemented this with fruit, meat , fish etc and whilst he didn't eat well he didn't starve!!. He has also been on a three day break to an activity based school centre in the UK. Despite me ringing them up to see if they wanted me to send food with him they didn't seem to have a clue. They told me all he needed to take was a bread substitute, fortunately i didn't feel inspired by them and sent him plenty of food and chocolate. Just as well ... their idea of feeding him was a baked potatoe and nothing else or a bowl of soup. Given the course was in march, it was frosty and he was outside all day he really needed all the extra food i'd packed.

My coeliac dd has been on brownie camp twice now. I send pasta, bread, biscuits, cereal for her and go through the planned food very carefully with the people in charge of catering. I also send along a copy of the gluten free food directory so that they can buy gluten free varieties for all the children where possible (eg with crisps, stock cubes etc), and go through contamination issues with them. We've had no problems. They are very careful. Dd also checks the food herself. She is very aware and I encourage her to take responsibility for herself (whilst always having a quiet word with the adults first to limit the possibility of her making mistakes!).

thanks for the advise folks, i guess I will never be 100% happy about this unless I am, there myself vetting everything she eats!!

its just she was so poorly before diagnosis and again for almost 10 months now having become intolerant to codex wheat starch, first they said this was a post viral thing follwing a nasty stomach bug last december, then they checked for all other allergies/ailments before re-checking her coeliac antibodies which were sky high!

she is on the mend on totally wheat and gluten free food but still quite weak and listless, so we have to be extra careful

It NEVER CEASES TO AMAZE ME the lack of knowledge of coeliac requirements among professional catering staff!!

Loobeyloo,

Does your dd cook?
My dd is very interested in food and doing
a lot of cookery and cookery courses has given her a good understanding of what she can and cannot eat, and of contamination issues. It helps insulate her against 'mistakes' and makes it easier for me to let her eat elsewhere (she is 8).

silverbirch

my dd is 8 too and does like helping to cook and has a very good grasp of what she is and is not allowed, she is very good about refusing sweets from friends in school etc, and some now ask and bring in only what she is allowed, which is nice!

but I can see trouble arising if her politeness in not wanting to tell an adult in a position of responsibility that they are wrong stops her from refusing something

once in a supermarket we were offered bread made from rye, the assistant did not see there was a difference between Gf and WF

too many people know so little and on school trips etc its not like she will be able to check the kitchen for contamination etc

shes not going till next year and i am worrying already, perhaps i will have to book into local B&B and smuggle her food parcels LOL

Hello! I know you posted your message about Celiac Disease years ago now on MN, however my DD has just been diagnosed and I'm beside myself at scenario's such as the one you described: cross contamination occurring when I'm not around. Can I just ask you how you are getting on with school trips etc. I'm a control nut about her anyway since she has chronic asthma, but this Celiac diagnosis has sent me through the roof and I fear I'm going to live my entire life worrying about her endlessly.... No one really understands how I feel but I think you probably do. If you had a spare second to respond I'd be eternally grateful. Thank you...

Hi,
This problem hasn't presented itself for us yet as DD is only 2 1/2, but I just wanted to ask, how much of a problem is contamination occasionally?

It's early days for DD as she was only diagnosed 3 months ago, and she's made amazing improvements in that time, but she still sporadically has dodgy nappies, which makes me think she's being given something contaminated (probably at nursery, even though they are adament that they are careful)... Will it have long term problems, or is it just feeling crap for a day or two?

Any tips/ statistics v welcome... Thanks

Hi KTKT and FSB
My DD was diagnosed as coeliac last April at the age of 9. In October she went on her year 6 residential for 5 days and the school gave me the contact details of the place they were staying so that I could speak to the catering staff. They were pretty clued up about gluten free menus already but we went through every meal and made sure there was something she could (& would) eat. I also sent her off with a few of her prescription items such as gluten free pizza bases which she gave to the cook when she got there. It all went really well, no problems at all.

With regards to the cross-contamination issue it is difficult to say how much of a problem this can be as some coeliacs as more sensitive than others plus it's very difficult to assess the effect on the gut that small amounts of gluten may have. It is obviously important to avoid cross-contamination and this needs to be explained to anyone looking after your child as many don't think about things like not using a toaster to toast gluten free bread (unless using toaster bags) or using a different tub of spread to make sure it's not contaminated with gluten from normal bread etc. However, I also have a 4 yr old DS who has life threatening food allergies to milk, wheat, eggs and nuts so I do have to say that I worry about cross-contamination a lot less with my DD than with DS because I know that it won't kill DD if she accidentally eats a small amount of gluten, even though I would obviously be very upset if it made her ill (she appears to be a super-sensitive coeliac and we've had to remove Codex wheat starch and barley malt from her diet). I don't think there's a coeliac on the planet who hasn't accidentally been 'glutened' at some point but as long as it's not a regular occurrence then there shouldn't be any long term effects as small amounts of gluten may make you feel rubbish for a few days but as long as you stick to the gluten free diet 99.9% of the time then there shouldn't be any damage to the gut lining. More and more places are catering for coeliacs these days including restaurants like Bella Italia and Zizzi's and there seems to be more awareness too. FSB three months still isn't that long and they say that the gut can in fact take up to 12 mths on a strict gluten free diet to fully heal so it might not be due to cross-contamination but worth keeping an eye on if it doesn't improve. Are you both members of Coeliac UK? They have loads of advice on their website and you can ring their helpline too (I have & they were really helpful).

That's fantastic information and I'm so sorry for you FREEFROMMUM regarding your son - it must be an unbelievable stress for you. My 4 year old DD was diagnosed just 1 week ago but I'm on a v steep and fast learning curve and we have a separate toaster, butter and jam, tea towels, chopping boards etc. I understand the cross contamination issue is relative for each individual case. It's a matter of educating everyone looking after our children I guess.
Carluccio's has a GF menu and I'm just cooking as normally as I can, just swopping normal flour for rice flour when making cakes etc; and I'm sure eating food in its most natural and unprocessed state at home is the way forward - eg rice, fresh simple fish/meat and vegetables. Birthday parties are the worst - we've had 2 this week and it's very hard to reason with a 4 year old. My top tip was learning that Heinz tinned baked beans and sausages are a useful emergency GF standby!
I wish you both the best of luck with this. It's SO reassuring to know other people are out there going through the same issues. My heart goes out to you FREEFROMMUM regarding your DS - my nephew has the same issues and carries and epipen. Thank you both again for your feedback and posts and GOOD LUCK.

Thanks freefrom, I didn't realise it took that long, she seems so much better already. She's got it pretty badly, and reacts to malt barley etc. I don't know about codex wheat starch because I didn't realise it was allowed in the first place, so I've just gone for total ban on all gluten, wheat, oat products.

Coeliac uk are v helpful... I keep forgetting to ask them (mumsnet default for all parenting issues!!). We went on our first post-diagnosis holiday to the canaries the other week and they were very helpful with print outs of phrases on Spanish (although I got some funny looks in restaurants because the words for gluten and coeliac are virtually the same in Spanish)!

:)

FSB just to say that some gluten free foods available on prescription contain Codex wheat starch as the gluten levels are considered 'safe' for the majority of coeliacs but there are still some who can't tolerate even this. My DD was having the Glutafin fresh brown bread on prescription because it tastes so much nicer than the other stuff but they've now taken her off that and put her on the gluten AND wheat free bread (not very nice but she doesn't seem to mind it too much). It's all a bit confusing but I think there's an explanation on the Coeliac UK website. Might be worth checking your DD's prescription products.

The residential school trips we've done in recent years (PGL mainly) are brilliant with children with all sorts of food "issues," for want of a better word. Coeliacs, sugar-intolerants, vegetarians (of course), nut allergies, the works. We had one child who would only eat bread, pasta and chocolate (faddy, not a medical issue as such) and he got by.
I think things have vastly improved recently.

we're not on prescription, because we didn't want to wait for the biopsy, so i've just been label reading... all the bread is pretty grim if you ask me, but DD doesn't seem to mind. i think because she's so young, she doesn't really notice!

i'm going to go home and re-check all the labels for Codex now!!!