New coeliac/ gluten intolerance support/ top tips swaps thread <insert funny title here>

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We're day 1 of GF life for my DD who was diagnosed yesterday aged 2 after a winter of constant colds and losing weight, grumpiness and loads of other hallmark features.

We're feeling mush more positive about it now we know roughly what we need to do but already wondering how to manage breakfast cereals and how to get her iron and zinc supplements into her as she won't accept anything that doesn't look like what she's used to. Have ordered a big online shop and joined Coeliac UK and quite excited about getting a hopefully happier little girl as she's been a littleshit tiny dictator since before christmas. Thought it was just terrible twos!

All welcome !

Glad you have finally found out what was wrong.

I hate to bring you back down but a lot of GF stuff may look a bit different to what she is used to. On the plus side she will soon get used to it.

There are GF breakfast cereals - some are better than others. You need to go around ALL the supermarkets and health food shops near to you as they will all stock slightly different things.

Also as she is little you will be able to get bread and flour and pasta on prescription too. ( I don't know how it is in your area but they used to do plain biscuits too - don't know if that has come off now due to everything being cut).

Doves farm flour is good for general purpose baking and get some Xanthan Gum to add when cooking - it helps to stop the crumbling that happens without the gluten in the flour.

Freeze the bread and only take out when you need to use it as it goes stale very quickly.

Hope this starts your thread moving and you get lots more advice.

I bake all my own gluten free cakes, bread and biscuits. Mostly our entire family eat gluten free as it is easier - except bread.

Genius gluten free bread from supermarket is good but I bake my own in a breadmaker and normal bread for teh rest of teh family too.

Buy Doves farm gluten free pasta as it is the nicest tasting one. Doves farm gluten free flour is a must have. The self raising version has xanthan gum in already but you can buy Doves Farm xanthan gum seperately too. It is not actually very good for you so I minimise its use. Dried egg white powder or even egg itself is a good binder in pastry I find.

Remember, all veg and meat is gluten free so most meals are easy to adapt. The big issue for me was discovering so many things have wheat or gluten hidden in them. Stock cubes, shop bought sauces, ready meals, even cornflakes. I get Kalo stock cubes or make my own stock and sauces. Read packet labels intensively.

Finally, if DD is lactose intolerant too (many coeliacs are) then get Lactofree milk from the supermarket. It is normal milk with lactose taken out with lactase enzyme. I also treat my own cream with lactase (buy Coleif from Boots baby section and put 10 drops in 600 ml double cream, stir and leave 24 hours in fridge) so I can eat homemade cream cakes and ice cream. Cheddar cheese or any hard cheese is virtually lactose free.

Bottom line is you wil need to bake and home cook but actually i find we eat more variety and far better than ever before.

Only downside is going out to restauranst is tricky though many do now cater for coeliacs.

My family also eat mostly gluten free except for bread, pasta and breakfast cereal. It's much easier to manage when everyone is eating the same, although it's easier if the person shopping/cooking is the one who is gluten free - I just find that it's easier for the coeliac when they are in control. I know a few children who are coeliac and the toughest thing is going to other peoples' houses to eat and to birthday parties because it seems as though most people just don't provide for or understand their needs. Parties are particularly hard because it means no birthday cake. You will probably have to send your own food to birthday parties to be sure your DD will be ok and it's probably worth having a stash of gf cakes in the freezer to take with so she doesn't feel excluded. I was thankfully diagnosed as an adult so didn't have to go through any of that, but I know an 11 year old who finds it extremely frustrating (as does her mum) and a 5 year old who is reluctant to go to birthday parties because she feels excluded. Oh and although you may need to make cakes and biscuits yourself, over time you'll learn to use the Doves flours so that no-one will even notice that it's gluten free.

I have a whole load of cake, biscuit and pastry recipes using the Doves flours/excluding wheat flour if you'd like - PM me your email address if you're interested.
Also, all of the companies who make the GF breads for prescription will send you a sample box so your DD can try them out and decide what she likes (although you might be the better taste tester if she's only 2).

I have two gluten free boys - diagnosed at 5 and 9, now 8 and 12. They got used to it very quickly, Dove's Farm is great as the other poster said, genius bread is ok too. I also bake a lot - cakes, biscuits and bread if I was home, but we are overseas at the mo so take whatever I can get! The boys have no problem at birthday parties - I pack them yummy stuff - fairy bread (not sure if that is just australian or not) , make cupcakes and ice them, they are used to it and have never felt excluded from parties. Some parents go out of their way to accommodate the boys coeliac and it is lovely when they do but I never expect it.

Re breakfast cereals - its hard when they are really young if they are determined about what they eat - I make rice pudding for mine and they have that for breakfast. Its a slow release carb and keeps them going at school. I make either strawberry or chocolate. They also have beans on toast, scrambled egg on toast, pancakes, boiled eggs and soldiers. Most of the gf breakfast cereals are highly processed and full of sugar. Another suggestoin is porridge - need to make sure they are gluten free but some coeliacs react to the protein in oats as well apparently (freefrommum can explain - thanks so can be a no go.
HTH

Aaargh lost posting!!!

Thank you - really useful. I've lost the will to repeat in full what I wrote so:
Where are good GF pizza bases? (we're not dairy free for now) How is it going to pizza restaurants - do you take your own bases? Where else is good for family meals?

Are there any sweets she can't have? What's good for leaving as a treat at nursery for the days when other kids have birthday cake? Can't guarantee I'll have enough time to bake each time [bad mother emoticon]!

Also how quickly will we see improvements in your experience? I don't know what to expect but I'm really excited about it - feeling much more positive about it all.

I saw very quick improvement within a week but it is so easy in the early days to accidentally eat something with gluten in without realising it. Hence, I have found over the years that cooking form scratch is the only really safe way. Ready made gluten free food is available but is expensive and not actually always a very nice taste.

We went gluten free with my younger son as soon as the blood test was positive as he was extremely unwell. He had lost 2kgs in 3 months, which is a huge amount for a just turned 4 year old and had many many bad symptoms.

Within a week he was bouncier, had regained colour, his poos were closer to normal and over a period of 1 month regained all his weight and more! Sadly we are having to reintroduce wheat for 16 days before his biopsy so I am seeing some of his symptoms return....although he is no way near as unwell as he was, I guess because it takes a while for it all to "kick in" again. Fingers crossed your DD1 improves very very quickly x

Exciting!!! Gosh yellowhouse that must be rather painful for you and confusing for him - I hope the time passes quickly and you get the result you want.

Ooh one more questions - does anyone have an example of their prescription request if they have a toddler/child under 5? Not sure where to start and haven't received anything from Coeliac UK yet - keen to max out free prescriptions where possible!

Hello...marking place...back soon...

Re the prescription thing - I think that it depends on what your doctor will prescribe. Some are more generous than others. Make an appointment for a chat and see what he/she says.

I just went and somehow deleted the really long post I'd written with clever links to relevant pages on some of the prescription brands sites - so here goes again, most probably in a more brief format.

You can get sample boxes from Juvela and Glutafin - these are the relevant pages and then you can look around the rest of the site to find the lists of prescription allowances by age, product lists etc.

Glutafin
Juvela

Also take a look at what's available in the supermarket as there are some great products available which are supermarket own brand and not expensive compared to regular products. Doves flour and pasta are excellent and I wouldn't bother with those on prescription to be honest. You can also get great crackers from Trufree and a couple of other brands whose names I can't remember from the supermarket.

Think about what you use regularly for the family and what you can substitute:-

-Sanchi or Clearspring Tamari sauce instead of Soy Sauce which contains wheat (noone will notice the difference)

• Quinoa instead of couscous (although when I tried to give this to my non coeliac 2 year old DD she spat it straight out - slightly different texture). You can also try buckwheat.
• Remember rice is ok and rice noodles are great with Chinese food instead of egg noodles
• Corn tacos/tortillas instead of wheat tortillas (I am having a bit of a Mexican fest at the moment as there are so many wonderful things you can do)
• French mustard and not English mustard which contains wheat

-Make gluten free pancakes (crepe style not American) which can be filled and baked in a sauce similar to a canneloni dish (I do this to make a gluten free canneloni verdi style meal). -Use gluten free breadcrumbs or coarse polenta or ground almonds to make chicken or fish fingers.

Take a look at Planet Organic and Goodness Direct - you can order things like cereal if breakfast time is tricky and also most other gluten free products if your local supermarkets aren't well stocked.

Just remember, most of all, it's all trial and error - sometimes it will seem hard, sometimes your daughter won't like stuff you buy or make but over time, you'll get there. I was diagnosed nearly 6 years ago and at first it seemed like the end of the world, but now it's a way of life. As an adult, it was much easier to switch, I went through the whole kitchen and pretty much binned all of the gluten and started my new life.

As I mentioned in my last post, I have a stash of baking recipes I can pass on if you'd like, but also, if you want some help with meal planning, I can give you some ideas as we have a mostly gluten free house so my kids only eat regular bread, pasta, biscuits and crackers. Maybe the best way to start is to write a food diary/think backwards of all the food your DD had over the past week before diagnosis and how you could adapt these meals to be gluten free.

Oh, and most Organix snacks, except for the oat bars and the biscuits are gluten free!

When DD1 was diagnosed at 2.8, she was a changed child within 2 weeks - it was a joy to see! My twins are also coeliac - they were diagnosed when they were nearly 4.

I'm afraid I haven't had time to read through all the posts above, but just to add on cereal - coeliac uk say that a lot of supermarket own-brand cereals are fine...we have sainsbury's or tesco's coco pops, cornflakes, honey nut cornflakes, rice pops and frosted flakes. Much cheaper than the officially gluten-free versions (about the only thing that is more cost-effective!). I quite often make pancakes or eggy bread at the weekend as an alternative.

We get glutafin pizza bases on prescription, Juvela fresh white sliced bread (Genius bread is now available on prescription, but my 3 DDs don't seem to like it very much), juvela pasta.

As someone has said above, cooking from scratch is easier - then you know what you're eating, but it's not always what 2 year olds want to eat, so here are some tips for child-friendly food! Most of the sausages at M&S are now gluten free and when it comes to Christmas, a lot of their stuffings etc are gluten free. Sainsbury's sell gluten free fishfingers (which I actually think are nicer than birds eye!) and chicken nuggets, some ready-made pizzas and other ready meals in the frozen section. Our local Sainsbury's has the best free from range of all our local supermarkets, but I think the better/bigger Asda shops have a good own-brand range too. Tesco's also have a good range.

I substitute gluten free flour in pretty much any cake recipe with very successful results, but I also have a few gluten free baking books: this one and this one are particularly good.

Parties are hard - my girls don't mind taking their own food, but do hate not being able to have the birthday cake. Some of my very good friends specifically bake gluten free cakes for my children which is really generous of them. Sainsbury's and Tesco's both now sell ready-made Victoria sponge and chocolate sponge cakes which are pretty nice, so if I don't have time to bake anything before a party, I might take one of these so that they can at least have some cake in their party bag.

I've also used this kind of thing to make my girls a cake with a particular character on it like their friends have at their parties.

Going out is becoming a little easier - Pizza Express are very happy to use one of our pizza bases to cook a pizza (and only charge us for the toppings!), Carluccio's do gluten free pasta as do Ask and Zizzi's. Wagamamas have a special allergy menu which shows exactly what you can eat from their menu. The larger branches of M&S now sell a (small) range of gluten free sandwiches, but they may not be particularly child-friendly.

Hope that's of some use! Best of luck - hope you see the positive results in your DD very soon .

OP welcome to the club - its really not that bad once you get into the swing of it. We are approaching 1 yr of diagnosis for my ds - he was nearly 3 and very very poorly, I was beside myself and praying he would have Coeliac because I was terrified that only something more sinister could make him so ill. Anyway eventually we got our test results, biopsy blah blah blah and he is coeliac, and within 8 days he had dramatically turned a corner. He was so ill he couldn't play, smile, walk up the stairs. I still well up when I think about it. However now he has out on 6 kilos in a year, grown 12 cm!!! and has as much energy as any 4 year old. Getting his iron back to normal was the hardest part, but he is doing well with dietry measures as he didn't tolerate supplement.

I like cooking and it felt very rewarding to literally feed by child back to health. I have carried on cooking the same hot meals pretty much. Agree Doves farm flour the best, their website and flour packets good for recipes too. Doves Pasta is really nice, quite pricey but we just all eat gf pasta now, and I don't bake with gluten flour. The only gluten I keep in is normal bread for other DS sanwiches and emergency choc digestives for me!!! I keep gluten and non-gluten in seperate cupboards/end of kitchen but I am quite lucky to have room to do this. I must recommend the Gluten Free Kids Cookbook (Rabinovic) although I have adjusted the recipes slightly there are some good ideas as you get started.

tkband3 I'm excited that you can eat out at Pizza Express, I had thought that would be a no-no with all of the flour flying around. Are they switched on? Do you provide a baking tray? Isabels pizza base are delicious, you make fresh with egg and olive oil and very wholesome although does contain milk powder so no good if lactose free). Annoyingly Waitrose stopped stocking (personal crusade of mine - replaced with foul ready made crumbling vacuum packed base in their own brand ). I now order in bulk from www.simply-free.co.uk/ which also do ice cream cones which was exciting (haven't tried these yet!).

Eating out is the biggest palaver by far, some chains are good and htey often have a book of menu items to cross reference for gluten (recommend Nandos, Carluccios - but always take time to explain it is for a Coeliac child to make sure they are extra careful). What I really miss is not being able to spontaneously assume I can feed my little one on the go.

I'm doing his birthday party in a couple of weeks and it will be a gluten free feast! I'm determined that he should for one special day eat the same food/cake as all his friends!!! And there won't be a sandwich in sight as he can't abide with the gf bread, home made or not!!!

medjool where do you get corn tortillas? I am thinking of buying tortilla press from coolchille co. as havn't found gf ones in shops and apparently its pretty easy to make your own?

My 4yo is in month 3 of gluten-free (diagnosed coeliac in Feb). The improvements aren't as startling as some on here, but are considerable - more colour, brighter, more energy, more cheerful and happy. He is still getting ill all the time - catching every bug going, but I hope that his immune system will be stronger when he is absorbing more nutrients.

We have found the gf transition at home to be reasonably straightforward (though much more time consuming shopping and cooking). We have pancakes for breakfast now as he didn't take to any of the gf cereals - pancakes made with gf flour, obviously. Pretty nutritious for a child, I think. He eats them plain or with agave syrup.

Grocery bills are way higher, though perhaps will settle when we've worked out which products suit him/us best.

Have just done my first prescription order. We were allowed 11 'units'. Coeliac UK have a list of what's available on prescription. In our area no biscuits/cake products allowed (even for a child which seems a bit mean but there you go). We have put Warburton's gluten-free brown bread on our prescription list, as that's the kind he likes best from the ones we've tried. Reasonably good for sandwiches.

He loves 'Pink Panther' wafer biscuits as they look very like the pink wafers that other children have at nursery.

We do a lot of home baking - make gingerbread, cookies and cakes.

Haven't had a lot of parties yet (he has been ill and missed most of the ones that have come up) but that will be tricky. I have found a local shop that bakes fresh gf cupcakes, so my plan is to buy one of those for him instead of the birthday cake each time.

We are mostly gf at home, just keeping gluten products for my 2yo, who I believe is coeliac but is in the testing process at the moment - negative blood test but referred to gastroenterologist as other symptoms still very indicative of coeliac. Waiting for appointment at the moment.

Thank you all so much - some great tips - have ordered Isabel's pizza mix and some yummy looking Mrs Crimble brownies from Simply free. Also ordered that kid's cookbook and my lovely friend is sending me the Phil Vickery one too. I've nominated my DH to do baking as it all feels rather a mission - relearning things just like when weaning. It does add up with costs doesn't it?!

Luckily DD's come round to having iron supplements but God knows what it'll do to her bowels! And as for the zinc in the "fireworks water" (fizzy tablet -a few sips'll just have to do.

Ooh I like those cake toppers tkband3 - I think that'll come in really handy. I've put ina tentative go at a presccription request and look forward to the odd free sample for registering online with a few companies.

I'm also excited to have an excuse to go to Carluccio's and Nando's more! Yes I was wondering whether it's a problem using the same oven for Pizza Express?

Quinoa looks fairly grim but I suppose so does couscous uncooked! Have also found some Annabel Karmel pasta stars which should be accepted.

Everything looks so expensive etc that it makes me want to save it all for DD but that's just not realistic is it?! I can see us gradually going GF as a household purely for convenience sake.

Did you all get checked when your DC were diagnosed? I've got tests in 3 weeks' time and am a bit nervous it'll be positive as I've had IBS for years (very mild and occasional).

I'm excited that we're day 3 towards health! And I can't believe how much information and support there is !

Agree with others that Carluccio's and Nando's are favourites for eating out.

Another tip: if you tend towards organic food, they usually have fewer fillers containing gluten. Eg yogurts are just milk plus fruit, no added "starch". If nothing else, the list of ingredients is shorter, so you spend less time squinting at labels in the shop.

missdeelite I get my corn tortillas from a local caterer who does Mexican kosher and gluten free food. It's the most amazing find- well, until I checked out the place you mentioned which looks amazing for other supplies! I think the tortilla press sounds like a good idea in the long run.

OP we have all been checked (DS1, DH and I) and blood test negative. However I have 5 month old baby and not sure whether to delay introducing gluten.

My MIL was diagnosed 4 years ago but doesn't comply, eats chapattis everyday hasn't grasped that eating occasional slice of gf bread doesn't counteract this - but then she wonders why she now has osteoporosis

Yikes that sounds very dangerous doesn't it missdeelite - how worrying/ frustrating for you.

My DH accidentally gave DD 2 smarties without checking and felt mega guilty. It's not yet part of our routine so it's bound to happen but still feel bad - tempted to pass on to others our gluteny stuff like stock cubes and some flours as we're much less likely to use it.

Did some baking with a Mrs Crimble cake mix today (well DH did) and it was lovely - and even tried a DS brown ciabatta roll which was very edible - how reassuring!

Yes tortillas sound great!

I gave a wheat free cracker to my ds that had barley in and felt terrible.... Lesson learned always read free from packaging closely!!! But u have to try not to beat yourself up too much as you're only human! Which is what our dietician told me. Sounds like you're doing great and the
Baking is quite fun once you get into it!

Polos have gluten in too!

I obviously do everything I possibly can to ensure the DDs don't eat any gluten at all. But I also count my blessings regularly that they don't have something as instantly life-threatening as a nut allergy, which I think would be much harder to cope with. If they did eat gluten by accident, they might have a tummy ache, or an attack of diarrhoea, but we don't have to carry an epipen around with us and live with what I imagine must be an ever-present worry.

Have you joined coeliac UK? They issue a very useful annual directory of gluten free foods - both those available in the shops and branded and supermarket goods. They send monthly updates as recipes can change and take you unawares - for example, I used to always buy Sainsburys ketchup (much cheaper than Heinz!) and then one shopping trip, just happened to check the label and it had gluten in it! So it's back to the more expensive Heinz for us again...

Re Pizza Express - I always impress upon the staff that they are preparing the pizza for someone with coeliac disease, so that they ensure they use a clean baking tray and a clean pizza wheel.

In Carluccio's they always tell us that it takes longer to cook the gluten free pasta, because they always use fresh water and cook it separately. Once, the waitress served the girls and then almost immediately came and took their plates away - she said the chef wasn't sure that it wasn't contaminated, so they made some more! Obviously the girls got rather hungry whilst they waited, but I appreciated the care they took! (I always take gluten free breadsticks to keep them going while we wait, as they can't have the ones they provide with the children's meals.)

Just a quick post as I'm off to bed. Make sure u get an appointment with a Paediatric dietician who should go through what they can & can't have, sort out a prescription & help plan a healthy gf diet for your child. Morrisons gf jam tarts are great according to my coeliac DD. Watch out for sweets like strawberry laces as they contain wheat, as do Smarties.

So glad I found this thread! DH is having to go GF. Hoping to try to incorporate his diet into family life. Great tips here - thanks!

I know! We tried one of medjool's yummy biscuit recipes yesterday and they were yummy - I may be piling on the pounds too!

Where do you get xathum gum from?

Have had contact from the dietician who is sending stuff out but seems to have just told us to look on coeliac uk - will chase and ask for an appointment.

No strawberry laces! Is life worth living?!! How's she going to do pick n'mix at the cinema?! Rubbish.