Tips for Living with Coeliac Disease

When we started the coeliac disease journey, the transition from never having to worry about food issues, to making sure everything was gluten free for two coeliac children was relatively easy.  Yes, it took a few weeks to get used to and it was a challenge, but we heard many comments from friends and family at how well we and the two children had adjusted to cooking for or eating gluten free food.  So we thought we would share with you our best tips that we have discovered along our journey!


Learning and Education

Don’t believe everything you’re told and trust your instincts

  • When the children were first diagnosed, a hospital dietitian suggested that a low gluten diet was acceptable.  It is not!
  • A paediatric specialist told us that a certain brand of food was gluten free… it was not.
  • We purchased what we were told were gluten free biscuits, they were not.
  • No matter what anyone tells you, if you are a coeliac, a little bit of gluten does hurt… even if you don’t feel it.

Teach your coeliac children how to read ingredient labels

  • They will need this skill for life as coeliac disease is a permanent condition.
  • Test them on it from time to time, so you know how much they know.
  • We came up with the acronym BROW (Barley, Rye, Oats and Wheat) for the food sources which contain gluten, so they could remember what to avoid.

Gluten food, barley, rye, oats, wheat, coeliac, imagine make believe, children

Teach your non-coeliac children everything too

  • The children in our family that aren’t coeliac know almost as much about coeliac disease, label reading and gluten free food as the coeliac’s do and this is so important!
  • They need this skill at home if they are cooking for the family or sharing food with their siblings.
  • When your children become adults and siblings eat at each other’s homes, your non-coeliac children will need to know how to cater for the coeliacs!

Join the coeliac society or organisation in your country 

  • We have found the one in Australia to be a valuable resource of accurate, up-to-date information.
  • They have great phone support and great resources (like an ingredient list book and iphone app which tells you what ingredients are gluten free and those that are not) and their quarterly magazine has great recipes and informative articles, and advertisements that are relevant!
  • The children love to attend the annual children’s Christmas party they organise in the big city near us, which is totally gluten free!



Asian supermarkets have some great gluten free treasures!

  • Usually, many different types of hard to find (non-glutenous) flour can be bought from these shops.
  • They are also a great place to get rice noodles and other non-wheat noodles, and rice based snacks for school lunch boxes, as well as gluten free curry bases, rice paper, and other goodies!
  • Make sure you check the ingredients properly, and if in doubt… leave it out!

Keep checking ingredients of the products that are not marked ‘gluten free’.

  • We are amazed at how many products change their ingredients over time, so you always need to check ingredients on anything you buy for coeliacs.
  • Quite a few of the things that we have bought in the past that were gluten free by ingredient (not labelled gluten free) are no longer gluten free.
  • Some things that weren’t gluten free when we started the coeliac journey are now gluten free by ingredient, so keep checking the labels of your favourite brands or foods.
  • Sometimes companies will make a simple switch from wheat starch (glutenous) to tapioca starch (gluten free) in the ingredients and all of a sudden you’ve got yourself another gluten free product!



Leave it as long as possible before trying some of the gluten free breads

Things have changed, even in just three years and gluten free bread is getting yummier and more like ‘normal’ bread, so you may not need to worry about this.

  • We left it as long as possible before the children tried gluten free bread, because we didn’t want them screwing their noses up at it, as a lot of gluten free bread does not have the same texture or taste as glutenous bread.
  • It can take a little while to get used to it, and if they have been eating normal bread and then have to switch all of a sudden, you may find that they think it is unpleasant. We have had no problem with gluten free bread because of this and they like nearly all they have tried.
  • The children tend to have a lot of rice and corn cakes, as they enjoy them and they are economical, but whenever they get bread they think it is a treat, and so they love it, no matter what it is like!
  • If the bread is not that great as bread, it is usually very edible toasted, and the kids have decided that cold toast made into a sandwich for school is pretty good!

Have more treats at home! 

  • We used to go to a fairly well known all-you-can-eat buffet place for a meal on special occasions and at other times.  They do have gluten free options, and they do monitor the buffet to try and avoid contamination.  But we haven’t been there since the kids have been gluten free because it seems too risky.  We have our own buffet at home instead, and the children love it, almost as much, and it is a lot cheaper!
  • We have a selection of their favourite easily prepared food, a special drink and a selection of desserts and they are well satisfied with their treat.
  • If you used to have ice-cream in a cone when you were out for a treat, have ice-cream in a gluten free cone at home instead.

Be aware of food that has been cooked by someone else

  • If you did not cook the food for the coeliacs, find out how it was prepared and what ingredients were used, even if they say it is gluten free.
  • Sometimes well-meaning friends, family, cafe’s and restaurants make mistakes, or over look things because they do not fully understand, even when you have specified, so keep checking at every step – when you order, when you receive your meal, when you order dessert, and so on.
  • Sometimes when you ask for a gluten free meal a restaurant will deliver it with a sauce, bread, or decoration that is not gluten free, so make sure you check the ‘extras’.
  • If they have made a mistake, be polite about it, but ensure that they deliver you another plate of food that is not contaminated by gluten.

Be aware of shared food

If you are a coeliac and are in a shared food environment where there is gluten free food and glutenous food,  it can be really tricky.

  • Check to see if there is other glutenous food on the table that may contaminate the gluten free food.
  • Are other people eating the food that is gluten free and are they contaminating it with their glutenous fingers?

Gluten Free, coeliac, contamination, imagine make believe, children


  • Think smart!  Soon after one of our children was diagnosed with coeliac disease at 8 years old, he was in a shared morning tea environment.  We had provided him with his own gluten free morning tea, as we were not sure of what would be served, and we weren’t there to supervise.  When we picked him up, we asked him whether there was any gluten free morning tea provided.  Apparently there was watermelon.  “Did you have any?”  “Yes,” he said.  “I took the piece that was still under the plastic wrap!”  He had chosen the piece that would not be contaminated by glutenous fingers from around the table!

Be happy to swap

The coeliac children find themselves in numerous situations where they are given food treats, food prizes, chocolate, lollies and candies for all sorts of reasons.

  • If they are given food they always check to make sure it is gluten free.
  • If it is gluten free, they will eat it!
  • If it is not gluten free, or they are not sure, they will politely (we hope) say that they can not eat it, and if there is no alternative, they usually bring it home.
  • There are non-coeliac siblings happy to devour these treats at home, but the main reason they bring them home, is so they can swap them for a gluten free treat!
  • We have a stash of treats at home, for the purpose of swapping and this ensures they never miss out or feel left out.
  • This works great at Easter time and Christmas as they are often given Easter eggs and candy canes, many of which they can not eat.


At Home

Put green stickers on everything gluten free

Coeliac, gluten free food, imagine make believe, stickers

We have put green stickers on everything gluten free in the freezer, fridge and pantry and have found this so helpful.

  • It is especially helpful when the ‘kitchen co-ordinator’ is not around to supervise.
  • Parents, children,  family, friends, all know that anything with a green spot means:
    • You need freshly washed hands
    • It needs to be put down or taken out into a gluten free environment (not on a bench full of glutenous bread crumbs!)
    • That anything that goes into that container is uncontaminated (hands, knives, spoons, utensils, food)
    • That it is put back in the pantry or fridge where it came from (cereal, honey, peanut butter, etc so that no-one accidentally picks up the wrong one because they weren’t thinking!)
    • That it is safe for the coeliacs and easily identifiable.
  • Anything without a green sticker (except for vegetables, fruit, milk, etc) is either glutenous or potentially contaminated, so is unsafe for the coeliacs.

Have separate margarine, and bread spreads

  • Have two of anything that the gluten people use that the coeliacs use, like margarine, peanut butter, honey, chocolate spread, jam, etc.
  • This makes it easier so that you never have to worry about contamination.
  • Have them clearly marked gluten free – we put a green spot on them.

Have a stash of gluten free iced cupcakes (with GF sprinkles!) in the freezer

Cupcake, gluten free, coeliac, imagine make believe, kids, party

We find that most people don’t give you lots of notice regarding their child’s birthday party.

  • We love knowing that whenever a birthday party pops up, we don’t have to think too much about food, as there are always cupcakes in the freezer and other things in the pantry.
  • See further below for more information about parties.


Away From Home

Have an ’emergency supply’ kit for when you go out.

We have a small cooler or esky (convenient with a handle) permanently filled with gluten free supplies, to go whenever we go to someone’s house, in the car for a day trip, away for a weekend, or when we might be out around a meal time with some uncertainty.

It contains something for:

  • breakfast – pancake mix – can also be used for dessert, or small packet of gluten free cereal
  • lunch – flavoured rice cakes (no need to find something to put on them)
  • dinner – instant meal – rice with curry vegetables, or flavoured tuna & a mini tin of corn
  • ‘bread’ for a barbecue – corn tortillas – they can also be used for other things like burritos, wraps, etc
  • pappadums for a quick easy extra – with soup, rice, or for a snack (microwave them for 30-60 seconds)
  • spaghetti – to go with a pasta sauce
  • dessert – pancake mix, mini jellies, jam filled marshmallows, ice cream cones
  • snacks – a small packet of biscuits, other packet snack, sultanas, muesli bars, etc – these change depending on what we have in the cupboard
  • tools – green (for gluten free) handled tongs – easy to deal with your own meat or other things at a barbecue, etc, bag closers – excellent for sealing opened packets of anything – they keep out possible contaminants!
  • equipment – pie trays and mini ones – useful on the barbecue (which may be contaminated) to heat tortillas, cook sausages, fry small batch of onion, etc, toaster bags – great for cooking gluten free bread in a contaminated toaster, ours are also suitable to use on the barbecue – could cook chicken, small steak, etc in them

Have a container of gluten free lollies permanently in the car.

  • Inevitably we will be out somewhere, and the glutenous kids are treated with a lolly for some reason.  The gluten free kids are always happy as they know that when we get in the car, they will get a treat from the lolly box.

Have a small container of ‘long life’ goodies at school in the class room. 

  • The teachers have loved the fact that our kids are easy to cater for at school, as they don’t have to get something special from the freezer (and defrost it) (as some parents provide special cupcakes and other things), or notify us when there is something special food-wise happening in the classroom.
  • We provide the teacher with a clearly labelled airtight container of mini meringues and some cookies, chocolate or other treat.
  • It stays at school all year, and we top it up when necessary.
  • The children have never complained about missing out on cake, or anything else, as they are always excited about the food in their box, and always tell me excitedly when they’ve had some treats from it.


Balloons, cake, children, imagine make believe

  • We pack a party box (container of food) for the gluten free kids and send that along with them to the party.
  • We usually include a cupcake, (as a substitute for birthday cake), packet of gluten free chips or similar snack, some gluten free lollies or candy, and some gluten free biscuits.
  • If it is at a meal time, then we include some more substantial food or feed them before they go.
  • We always notify the parent in charge when we RSVP to the party so that they know what’s going on, and often they go to the trouble of putting something different in the take home party bags which is nice.


What Now?

If you haven’t already, we encourage you to read our coeliac disease journey. We also have some gluten free recipes on our Recipe page that you might like to try.  You can also find recipes in each one of our Imagine. Make. Believe magazines that are themed and great for parties, and are easily adaptable to different dietary requirements.  We wish you well on your own food and life journey, and hope we have you helped you in some way.

Do you have your own tips on living gluten free, or living with coeliac disease?  If so, we would love it if you shared them with us in the comments below.

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