In my last post I mentioned that I usually keep quiet about my children for privacy reasons.  However, two (out of the four) were recently featured in The Australian Coeliac magazine as part of a competition that Coeliac Australia was running, so I thought I would share it here (minus a couple of details I blanked out).  It tells a little of their story.  Of course, if you are a member of your state’s Coeliac Australia group (formerly known as the Coeliac Society) you would have already seen it!

It all started with concerns about my daughter’s height.  She is short for her age.  Unusually short.  She is a tiny bit taller than her sister who is 20 months younger than her.  They generally wear the same size clothes.  She was not born short, but at six months of age there was a significant drop in her height.  I talked on and off to doctors and health nurses for six years about it.  No-one was too worried.  She was happy, ate well, and obviously the answers I gave to the questions they asked, indicated to them that there was not anything obviously wrong.  So nothing was done.  It niggled at me for those six years, until I took her to a doctor that she hadn’t seen before, who I knew would take me seriously about my concerns.  A series of blood and faecal tests later showed that she most likely had coeliac disease.  A simple blood test is it all it takes to find out whether you are likely or unlikely to have it.  Because coeliac disease runs in families, it was recommended that we all have a blood test.  That is how our son was diagnosed.  It can only be confirmed by a biopsy of the small bowel, which they both had.  Both confirmed.  Symptoms for coeliac disease are wide and varied and as a result, many people remain undiagnosed.  (Coeliac disease affects approximately 1 in 100 Australians. However 75% currently remain undiagnosed. This means that approximately 160,000 Australians have coeliac disease but don’t yet know it.)  Often undiagnosed coeliac children do poorly at school, are tired and irritable, are of short stature, have diarrhoea,  regularly have a sore tummy or have other symptoms.  Our daughter’s symptoms were short stature, constipation and a complaint of a sore tummy once in a blue moon.  Our son did not have any obvious symptoms – only the tired and irritable one, except we don’t think his is coeliac related.  Untreated, coeliac disease can lead to chronic poor health, osteoporosis, infertility, miscarriage, depression and dental enamel defects. There is also a small, but real, increased risk of certain forms of cancer such as lymphoma of the small bowel.

Having to shop and cook for children with coeliac children has proven to be challenging, but after a year we have all adjusted pretty well.  The few weeks between having the blood tests (which showed a positive coeliac disease result) and having the biopsy of the small bowel (which confirmed coeliac disease) was significant for us.  During those weeks it was important to stay on a glutenous diet (to make sure the biopsy had an accurate result), but for the children it was a great time of talking about what they would, and would not be able to eat in the future.  They had lots of yummy glutenous treats in those weeks, as it was likely to be the last time they would ever eat anything like it again, and we also needed to use up as much glutenous food in the well stocked pantry and freezer as possible to minimise the awkwardness later on.  

With all the knowledge (learning about ingredients, checking the ingredients on lots of things we already had in the pantry, and learning about the consequences of not eating the right food - the long term consequences are not good), and preparation we had (“You will need to try new foods on this diet, and if you don’t like it, then you won’t need to try it again!” and “Sometimes the glutenous kids might get a treat that the gluten free kids miss out on and vice versa” although we do our best to try and keep things ‘equal’), it enabled us to have a very smooth transition from the glutenous diet to the gluten free diet.  Of course, we have not put the whole family on the diet as that would deprive the glutenous ones and it would be extremely expensive to sustain.  But the main meal in the evening is usually totally gluten free which is easy and cheap enough to do. 

I remember the first day after the two children had confirmed coeliac disease.  It was D-day.  No more gluten… ever (after breakfast that is, because there was no gluten free cereal in the house!).  No skerricks, no ‘traces’, no ‘may contain’s as a bread crumb can do the damage (to your small intestine).  I happened to have rice cakes or corn thins in the pantry, so I sent them off to school with their first gluten free lunch.  The next stop was the supermarket.  I remember sitting on the floor of the supermarket with a very patient four year old for hours (literally) while I was reading every ingredient on every packet I put my hands on.  We then went to two more supermarkets and did the same (not quite as long), a total of five hours in one day!  I then came home with bags full of shopping and had to read absolutely every label that was already in my pantry, sort the glutenous from the gluten free, get my four year old to put green stickers on all the gluten free items (which she happily did!), empty and wipe down the shelves, and rearrange!  All the gluten free food on one side, and all the glutenous food on the other.  After that, I had to go through my fridge and freezer and do the same.  It was an education for my four year old, and she wasn’t one of the coeliacs!

Here are some of my best tips for cooking for, living with or being a coeliac:

1. Don’t believe everything your told. 
• When the children were first diagnosed, a hospital dietitian suggested that a low gluten diet was acceptable.  Fortunately, I did not believe it!
• A paediatric specialist told me that a certain brand of food was gluten free… it was not. 
• Recently, I had a lunch stall person give me some individually sealed gluten free biscuits and before I got to the car with them where I would have naturally sat down and checked the ingredients (it becomes habit, so much so that it is difficult to avoid looking at the ingredients… you can’t help it!), my daughter had opened the packet and had some crumbs (fortunately not taken any bites) and my son in the meantime was checking the ingredients (I’ve trained him well – daughter has a little more to learn yet!) and said in a distressed tone, “These have wheat flour in them!”.  What?  That’s right!  The person had assumed that because these biscuits were packaged the same as the other gluten free biscuits, that they were gluten free.  Luckily for her, my kids had not consumed them.
• No matter what anyone tells you, if you are a coeliac it does hurt… even if you don’t feel it.  Our children are a testament to that.  Lots of people think that because their coeliac friend or relative is violently ill when they have even a breadcrumb’s worth of gluten, that they are more sensitive to gluten than those who don’t have any obvious reaction.  They have to have a separate toaster, and utensils, etc,  because they are so sensitive.  Our children, with little or no symptoms are in the same boat.  They are just as sensitive, we just don’t see it.  They still have to have the separate toaster, utensils, etc.  They have to be just as careful to avoid gluten.  I have been told that often those who don’t get a violent reaction (like vomiting or diarrhoea) are more likely to suffer more damage to their small bowel because they are ‘keeping’ it in their body. 
2. When first diagnosed, leave it as long as possible before trying some of the gluten free breads.  I did this with my children, because I didn’t want them screwing their noses up at gluten free bread, as, lets face it, most gluten free bread does not have the same texture or taste as glutenous bread.  They tend to have a lot of rice and corn cakes, as they enjoy them, and when they get bread it is a real treat, no matter what it is like!  We have worked out though, that 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!  As time goes on, I will be providing them with more gluten free bread as it provides more variety and helps them to still enjoy rice and corn cakes instead of getting sick of having them so often.
3. Having green stickers on everything gluten free in the freezer, fridge and pantry has helped enormously, especially when I am not around to supervise.  That means my husband, 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.
4. Of course, anything without a green sticker (except for vegetables, fruit, milk, etc) is either glutenous or potentially contaminated, so is unsafe for the coeliacs.
5. Have separate margarine, and bread spreads like peanut butter, honey, chocolate spread, jam, etc so you never need to worry about contamination.
6. Have an ‘emergency supply’ kit for when you go out.  We have a small esky (convenient with a handle) permanently filled with 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
• 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 I 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 (the green and orange ‘sticks’) – excellent for sealing opened packets of anything – they keep out possible contaminants!
• equipment – pie trays and mini ones – useful on the barbecue to heat tortillas, cook sausages, fry small batch of onion, etc, toaster bags – great for cooking gluten free bread in a contaminated toaster, these ones are also suitable to use on the barbecue – could cook chicken, small steak, etc in them
7. Have a container of gluten free lollies permanently in the car.  Inevitably the children and I will be out somewhere, and the glutenous kids are treated with a lolly for some reason (like going to the doctor).  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.
8. 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, 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 me when there is something special foodwise happening in the classroom.  I have provided the teacher with an airtight container of mini meringues and some cookies.  It stays at school all year, and I top it up if 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.
9. Have a stash of gluten free iced cupcakes (with sprinkles!) in the freezer at home.  I’m finding that most people don’t give you lots of notice regarding their child’s birthday party.  I love knowing that whenever a birthday party pops up, I don’t have to think too much about food, as there are always cupcakes in the freezer and other things in the pantry.  I pack a party box (container of food) for the gluten free kids and send that along with them to the party.  I usually include a cupcake, (as a substitute for birthday cake), packet of gluten free chips or other snack like that, some gluten free lollies, and some gluten free biscuits.  If it is at a meal time, then I will include some more substantial food or feed them before they go.  I always notify the parent in charge when I 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.
10. 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!  Just make sure you check the ingredients properly, and if in doubt… leave it out!
11. Keep checking ingredients of the products not marked ‘gluten free’.  In the first three to six months of the children being diagnosed, I was amazed at how many products changed their ingredients.  A few of the things that I had been buying that were gluten free by ingredient are no longer gluten free… I check again every now and then, just in case they change back!  This means that you always need to check ingredients on anything you buy for the coeliacs.  Some of the things that were glutenous, changed to gluten free (by ingredient).  Sometimes they 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!
12. 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 kids 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.
13. Teach your coeliac children how to read ingredient labels and test them on it from time to time, so you know how much they know.  They will need this skill for life as coeliac disease is a permanent condition (although, they are currently working on a vaccine).  I also came up with the acronym BROW (Barley, Rye, Oats and Wheat) for the food sources which contain gluten, which I quickly taught to the children, as they needed something easy to remember so they knew what to avoid.
14. Teach your non-coeliac children too.  The non-coeliac children in our family know almost as much as the coeliac’s… which is important!  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!   They will also need that skill at home if they are cooking for the family or sharing food with their siblings.
15. Be aware of shared food.  Find out how it was prepared, what the ingredients are, is there 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?  These are all things that you or your children need to be aware of, so teach them to your children.  I was very proud of my then eight year old who was in a shared morning tea environment a while back.  I had provided him with his own gluten free morning tea, as we were not sure of what would be served, and I wasn’t there to supervise.  When I picked him up, I asked him whether there was any gluten free morning tea provided.  Apparently there was watermelon.  “Did you have any, I asked?”  “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.  I was very impressed! 
16. Join Coeliac Australia (if you live in Australia) (I am not affiliated or paid by them to say that!).  It has been 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!  My children love to attend their annual children’s Christmas party which is totally gluten free!

Are you a coeliac or on a gluten free diet, or have a friend or family member that is?  If so, I hope you’ve found this helpful and I would love to hear from you.  What are your best tips or recipes or what have you found helpful?