thread: 4yo diagnosed as coeliac

  1. #1
    BellyBelly Member

    Jun 2009
    in the Capital

    4yo diagnosed as coeliac

    It looks like we have gotten to the bottom of DS2s sleeping problems. Sadly it also includes a positive result for coeliac.

    Daytime fatigue and falling asleep mid-play, are put down to his extreme low iron count.

    Stomach pains, constipation, flatulence, irritability are a result of his gluten intolerance.

    What is concerning is that he also has a low white blood cell count. The paed asked if he was sick when he had a blood test as that could explain it. We need to retest in two months.

    I feel absolutely awful as for the past three weeks we have been making him stay awake during the day, sedating with an antihistamine at night to see if it was just bad habit and to get him into a sleep routine.

    The poor little poppit has had a hearing test, eye test, xray and blood test to get to the bottom of his behavioral and sleep issues.

    The paed also gave him an echocardiogram which revealed that he has a bucuspid aortic valve. It doesn't need any treatment and he could quite possibly sail through life without any issues but there is a chance that he could have quite severe problems, which scares the absolute crap out of me.

    So what next? I need recipes and lunchbox ideas plus any other support you might be able to provide.

  2. #2

    May 2008
    Melbourne, Vic

    Re: 4yo diagnosed as coeliac

    Hi Cass,

    First off big hugs. It might seem scary and daunting right now but trust me this is a good thing - being diagnosed young means he has a really good chance for his body to repair itself and everything to go back to normal.

    Coeliac disease is easy to treat fortunately - cut out gluten. My mum was diagnosed about ten years ago and it explained a life time of health problems. Coeliac disease destroys the lining of the digestive system meaning your body can't absorb things properly - like iron, hence his iron deficiency. Mum had that. Mum also had massive calcium malabsorption, which means she now has the bones of an 80yo - brittle as anything. At her age, she can't reverse the damage to her bones. Your son might not even have those sort of issues yet.

    Once you adjust his diet, his gut lining will begin to repair itself and things will start to absorb properly. You will be amazed at the changes you'll see in him - we were with my mum.

    Dietary changes aren't as difficult as you'd think. Dinners are easiest - you'll need to start cooking from scratch, if you don't already, for things like casseroles and pasta sauces. Packets from the supermarkets often contain hidden gluten in the form of thickeners, starches, additives. Join the Coeliac Society Australia and you will receive a little book that you can stick in your handbag, it contains all the additives/ingredients you'll find on packets and whether or not they contain gluten. Really helpful.

    So dinner you can cook your stir fries, casseroles and sauces yourself and control the gluten. If you want to make a gravy or thicken a sauce, gluten-free cornflour, potato flour or arrowroot will work. All gluten free.

    Breakfasts are pretty easy as there are heaps of Gf cereals around these days. Eggs are great, with a gf wrap. Unfortunately gf bread is pretty terrible but there are some good ones around. My mum loves buckwheat pancakes.

    Beware the toaster - if you cook normal bread in it, the crumbs can contaminate the next piece of bread, if you want to do gf bread next. Same goes with knives in butter. Once his system repairs itself, he will be extremely sensitive to even a crumb of gluten - it'll most likely set off tummy pains, gas, cramps. But you'll get used to working around things like that.

    Lunch boxes? There are lots of gf crackers and crisp breads - think corn cakes, corn thins etc. Corn tortillas, as long as they are gf, are good. Normal fruit snacks, dried fruit and nuts, cheeses. That's what I'd do anyway.

    Hope that helps. Don't be too daunted - the range of gf products available in the supermarket is huge these days. And it's a smallish sort of change that will have a big impact

    Let me know if there's anything I can help with.

    ETA: there is heaps of easy gf baking around these days (one of the yummiest birthday cakes I do is gf - go the magic bean cake!) and most cafes/restaurants are aware of gf and will point out what in the menu is gf, or check with the chef if required.

  3. #3
    BellyBelly Member

    May 2008
    Country VIC

    Re: 4yo diagnosed as coeliac

    Hey Cass, sorry to hear about your DS, but try & see it as a positive that you have a diagnosis now & with a change in diet you should see a massive improvement!
    Our besties little girl was diagnosed celiac at 3, had so many issues with tiredness, behaviour & was such a tiny, skinny delicate girl. Since changing her diet, the improvement is nearly miraculous! She is soooo much healthier & happier now. As for diet, there are some fantastic alternatives out there nowadays for gluten free options & he will learn what is safe for him to eat & to ask if he's not sure.
    Hugs for your family on this journey xx

  4. #4
    Registered User

    Jan 2008
    Central Coast NSW

    Re: 4yo diagnosed as coeliac

    I was diagnosed about 3 years ago. At the time it was devastating (it was the cause of a miscarriage) but good to know how to fix it! Gluten free eating is getting much easier because of the trendiness of choosing GF or Paelo etc I find that lots of on the shelf foods are GF by ingredient, even though they are not marked GF. There is an app that shows ingredients, numbers etc and which are and aren't GF. Most state Coeliac organisations have info sessions as well. I found GF bread etc a bit of trial and error to see what I liked. I haven't found a good wrap (all like cardboard) but the mini corn tortillas are good. For making a sandwich I toast the bread and let it cool. I find it loses the doughiness that GF bread tends to have. Feel free to ask any questions - I'm happy to add on FB or give you my email if you like.

  5. #5
    Senior Moderator

    Nov 2004

    Re: 4yo diagnosed as coeliac

    I have had Ds1 in a low or no gluten diet for at least 3.5 years. It's easy once you manage the first few months.

    It's back to basics. Baking your own cookies and cakes from scratch. For lunchbox goodies - he takes two apples, a tub of mixed fruit, a packet of plain chips, sometimes carrot or celery sticks with home made dip (he doesn't eat dip but that's what I would do).

    There are plenty of GF options out there. Good luck.

  6. #6
    BellyBelly Life Subscriber

    Jun 2010

    Re: 4yo diagnosed as coeliac

    Amanuet could you please pm me the app with that lists the numbers?

    We are wheat free so not all gluten but we try to stick with GF as it seems to help our little person, we were wheat egg nut soy you name it we had the allergy or intolerance. Once you get past the initial stages it gets easier. Our biggest hurdles have always been other people, school and day care. Generally we stick to the, 'eat from your own container' rule, its when well meaning people try to be helpful that things can get hard. Also when eating out and asking people if they do GF, not everyone knows what gluten is or understands still, so if in doubt leave it out.

    And remember to check your labels every single time! One of our well loved brands changed their ingredients on us

    Our lunch box includes 2-3 pieces of fruit/vege for crunch and sip, morning tea and afternoon tea, plus a sandwich or rice crackers for lunch. Like Amanuet we have found a lot of our usual things are GF just by ingredient anyway so not a huge amount of change once we knew what we were doing.

  7. #7
    BellyBelly Member

    Jun 2009
    in the Capital

    Re: 4yo diagnosed as coeliac

    Thank you everyone for your replies/advice.

    I went shopping today and basically came back with fresh fruit and veges from the markets and rice crackers, cornflakes and cleaning products from the supermarket (LOL). I will be baking, baking, baking. The only thing I've had to omit from his lunchbox is his sandwich. He doesn't seem to mind the GF bread - although only toasted.

    My mum is staying with me at the moment and she is taking home unopened packets of pasta, flour and cereals. I've ditched quite a few baking products and am stripping back to basics and creating from scratch - the funny thing is that I thought I was already doing that but out goes even my baking powder and cornflour (which was wheaten) and replaced with friendlier versions! Nasty little gluten seems to be hidden in everything.

    He is doing well with taking his iron supplements in the morning - we break open one of the fefol capsules and mix it in with a little OJ (as advised by the paed). I'm not looking forward to taking him back for more bloods, but it has to be done.

    I'm a bit worried about after school care so tomorrow my mum will pick him up. I let them know by email on Friday morning and hope that they pick it up pretty quickly and we get positive support. They share fruit in the morning but eat their own lunches but they do cook and bake which is a big worry.

    I will definitely join the coeliac society - the paed suggested that too.

    I am going to be baking that magic bean cake, it looks delicious. Weird.... I won't tell anyone what's in it til the compliments roll in.

    Anyway, thanks again for all of your suggestions. It is a little overwhelming but I know that now we can get on with things and make progress.

    Thank you! Thank you! Thank you!

  8. #8

    May 2008
    Melbourne, Vic

    Re: 4yo diagnosed as coeliac

    Good to hear you sounding more positive

  9. #9
    BellyBelly Member

    Jun 2009
    in the Capital

    Re: 4yo diagnosed as coeliac

    Grrrr....Got a call from the school this afternoon to say that they accidentally gave DS2 pasta at after school care.

  10. #10
    BellyBelly Member

    Aug 2008

    Re: 4yo diagnosed as coeliac

    Oh, that's a setback Hope it's not too traumatic for you.

    My kids love the coloured GF pasta. Just because it's coloured.

    Buying gluten free biscuits is easy enough, but making them is even more delicious! We're not GF here, but I use GF flour often, for DHs sister and boss, and just for a change. Oh, and there's also magic bean biscuits!

    Zehnder bread is what we buy for GFers, or Sol Breads. They mail order to lots of places, worth checking. Their pumpkin and rice bread is pretty good. I prefer corn thins though, I'm a sucker for those!

    Dried apricots and dates will help to boost your little guy's iron count, as long as it's not too rough on his damaged gut.

    Good luck. He's lucky to have you - tuned in enough to catch it early, and now to throw yourself into making it work for him. I hope the sleep improves!