3 year old diagnosed with coeliac, any tips?

[pevie]

Hi everyone. Have not been on here for a while, spent first year or two of my daughter's life dazed and confused, asking for advice about everything, as she didn't sleep, eat terribly well and was quite distressed. After lots of tests and different possible diagnosis, we were finally told 4 weeks ago, that she has coeliac disease. We have joined Coeliac Uk but didn't notice that they have a discussion forum so thought I would return to the tried and tested support of mumsnet to see if anyone has any tips on how to support this?
Initial questions include, any good tips for eating out? If you or anyone you know has been diagnosed, how long did it take for the symptoms to disappear? Our daughter had associated difficulties with sucrose which I believe are meant to disappear with a gluten free diet, any experience of this? Also, any idea where we can get further advice about coeliac?

Any handy hints would be greatly appreciated!!!

I've been diagnosed for 13 years now. The good news is that after 6 months I felt great, and after a year I was in better health than I'd been for 7 years.

It'll take a while for the villi in your daughters gut to regrow, so problems with lactose etc could take a while to go

Eating out can be a pain, but you can work round it. You'll find places in your local area that are great, some that are OK, and some that you avoid. You can get something just about anywhere, but it may be very boring for a 3 year old. Cultivate anywhere good by giving them loads of positive feedback.

Cooking and shopping might seem like a nightmare now, but you will eventually hardly think about it. Honest

Thanks for that. The consultant said that we should see some calming down of symptoms in 4-6 weeks but when I looked on internet, it looked like the associated symptoms of sugar type deficiencies could take longer. consultant and dietician weren't very clear on this so is good to hear from other sufferers. LO has obviously felt pretty rubbish for a while, poor soul. she is very windy and up in pain a lot during night.

We were cutting out sugar in diet as initially thought this was only problem but now is having more sugar as trying to avoid wheat and gluten. Can be quite confusing.

Any chain restaurants that are good for gluten free? We have found a few local restaurants in our area although they don't always have a good choice and supermarkets are all pretty good!

Also considering where to go on holiday this year, any tips?

I did have improvements pretty quickly - in my case the pain from my arthritis eased more than the painkillers had in a couple of weeks, but in adults I think it takes longer to get back to full health - children bounce much faster.

Wetherspoons, Beefeater, La Tasca, and Wagamamas all have gf menus/allergy listings and are pretty good to eat out at.

Holiday - CenterParcs are spectacularly good for gf eating - theres gf childrens choices at just about all the restaurants, the pancake house will do gf pancakes (they have the mix themselves), and in the italian one at Longleat they have gf pasta. I think I'd choose there as my first gf holiday.
I've been a couple of times to a lovely farm in Cornwall where Lucy specialises in holidays for families with preschoolers, and cooking for those will allergies. Last time we were there she catered for me beautifully, and also for a little girl with multiple food allergies which were very tricky. It's pricey, but gorgeous

Thanks, thats really helpful. Haven't managed to speak to anyone with coeliac yet so is great to get tips from someone who knows.

Whetherspoons and Beefeaters, thats a surprise. Others are also helpful. Have been to Centerparcs before we knew so will maybe look into that again.

Hi

Where are you ? I have a 7 yr DS who finally got diagonosed Oct last year

Here is a good source of info : here

Hi - These guys do really yummy gluten free sausages, but they also have quite a lot of info and videos on their website theblackfarmer.com.

Am in Glasgow area. I know there is a local group but not contacted them yet. Found some gluten free sausages when away in Peebles recently but sure there must be some locally.

Will try these links. Thanks again.

Hi Pevie

Do you mind me asking when your first thought your DD was poorly? Was it when you weaned her?

Tesco do gluten free sausages - they are with the normal sausages in the fridge aisle. They are meant to sell some black farmer some too but they are NEVER in stock when I go to buy them.

Have had Jimmys sausage from Tesco - can;t find them any where else - they are fab !! Best I've had and make a lovely casserole as well.

M&S have some new sausages which say "93% meat" - just their bog-standard sossie range - but are GF. And yummy.

DS is dairy/soya intolerant, so I read all labels, and could probably help with a g/f diet. At one stage the GP thought DS was coeliac, and we discussed the options. Apparently there is quite a bit of help on prescription?

• Tescos do a gf bread. Can't remember the name off the top of my head.
• Both Tescos and Sainsbury's have an allergy section that includes gf stuff (pasta, desserts, cakes etc)
• Tescos has Corn Thins which is like a rice cake and gf. Both DCs love them with hummus.

Glad you have a diagnosis for your daughter. My 3 year old was diagnosed with Coeliac a year ago. He was greatly improved in a couple of months and now a year on he is in excellent health. He now sleeps through(hurray!), eats well, is full of energy and is taller and heavier.
For information if you don't already know, some gluten free food including some presription products has Codex wheat starch/washed wheat starch in it which means the food can be labelled "Gluten free" as the amounts of gluten are so small and are suitable for most coeliacs.
Also a lot of breakfast cereal is labelled "suitable for coeliacs" but has a small amount of barley malt in it.
As my son was so poorly before he was diagnosed (he hadn't put any weight on in a year) we decided to go for absolutely no gluten whatsoever no matter how small the amounts to get him well again. When he is older, he can try the gluten free products with Codex wheat starch etc and see how he feels after eating them.
Eating out we go for roast dinner type meals - meat and veg (no yorkshire puddings, stuffing or gravies) and take our own gravy, Nando's have a book in their restaurants which details every dish and who it is suitable for (gluten free, dairy free etc), if you take a gluten free pizza base to Pizza Express they will put the topping on. Sainsburys Taste the Difference Pork and Herb sausages are gluten free. Genius bread from supermarkets is expensive but good for sandwiches as it doesn't need heating through. Cadbury, Heinz and Sainsburys own products are well labelled for allergens.
Coeliac UK handbook is very helpful with lists of prescription products as well as all the supermarket products. Hope your daughter feels better soon.

Hi. Sorry folks that I didn't get back sooner, don't always get chance to go online. All this information has been really helpful. we're now about 6 or 7 weeks in but havn't noticed her getting any better. consultant said it could get worse before it gets better (didn't say this at beginning though) so not sure what to expect!! She is waking up more gassy at moment and still think she has problems with sugar!!!

Have started to find a lot of the things you are talking about through perseverance. Got M and S sausages, also found some little spanich chipolatas in Tesco. Now have pretty good range for home, is really just ongoing symptoms I'm now worried about!!!

someone told me recently that McDonald's do gf chips and a burger if you ask, any experience. Older DD likes Mcdonalds for treat but obviously have not been back since diagnosis!!!

As far as when did trouble start, she was unsettled from outset, not sure if got any through my breastmilk. But definately worse after weaning which was a total nightmare. I still get shivers thinking about those days.

Once again thank you for support.

Glad you have sorted yourself out at home.

We don't go to McDonalds a lot but we have had these items which are gluten free and we have had no problems:
Breakfast Items: Egg without the muffin, hash brown
Burger (no bun), chips, milkshakes, fruit bag

We are trying a J D Wetherspoons this weekend as they actually have a gluten free menu as well as their normal one.

Hope you see some improvement soon.

TGI's have a good GF menu.

One of the things I found out was Coke/Pepsi are GF but Tesco/Sainsburys etc are not always.