Jump to content

March 2010 #1 - Auroras Gluten Free Life


  • Please log in to reply
15 replies to this topic

#1 Nut

Posted 10 March 2010 - 07:22 AM

To help raise awareness during Coeliac Awareness Week, Karen shares her story of her daughters diagnosis of coeliac disease and how life has changed for them since.

Read the story here: http://www.essentialbaby.com.au/parenting/...00315-q6yy.html

You're welcome to leave comments!

Just wanted to add as well that the photo was taken by Jinkyart and provided with permission.

#2 harpersmum

Posted 15 March 2010 - 12:44 PM

Karen, its so nice to see a happy healthy looking picture of your family. Your signature of Aurora with her bloated tummy used to break my heart- the pain that poor little thing must have been in. I started lurking in the food intolerance section after my dad was diagnosed with Coeliacs at age 62. What a shock to have to change the eating habits of a lifetime, he did not cope well initially. I'm please there is so much more info and so many more products avaliable these days. thanks for sharing your story.

#3 Mariamum

Posted 15 March 2010 - 01:29 PM

Karen beautiful family picture, well done for persevering until you got an answer. They always say to follow your instincts, and usually they're right! You're doing a fantastic job with the Gluten Free for Aurora!
Aurora is amazing little girl for taking all in her stride, thank you for sharing your story Karen.

#4 L712

Posted 15 March 2010 - 03:09 PM

Aurora is an amazing girl, and Karen you really need to be proud of the great job you have done educating yourself, family and friends about GF.  I know I have learnt SO much from you.

L
xxx

#5 pinkbubbles

Posted 15 March 2010 - 09:29 PM

Karen, love the pic of you all together its beautiful.
Thanks for sharing your story of Aurora's journey with CD, its been a struggle for all of you.

Myself & my daughter have an intolerance to Gluten so we tend to keep my wheat to a minimum & eat GF most of the time, I am one of the lucky ones but totally understand the crazy cost for familes to buy in the health section. We love the pasta but maybe eat it less these days. We eat meat, rice & veg a lot because of the cost but it is amazing what you can now get GF these days. When I was interstate I was amazed to see Eagle Boys have GF pizza!

Congrats on a great article!


#6 Missy83

Posted 16 March 2010 - 09:56 AM

Karen, I just want to thank you for being so proactive in trying to raise awareness of this very under/misdiagnosed condition.  It was because of your sig of your beautiful aurora that we first realised our 18 month old son's huge belly was possibly a sign of something wrong and after checking out the coeliacs website realised he could very well have coeliacs (very bloated/pale foul smelling bulky poos/only pooing once a week/severe flatulence/failure to gain weight/anaemia/easy bruising/ulcers/skin rashes/dental defects)so decided to try a gluten free diet.  To our shock within a few weeks all his bowel problems were gone and he put on as much weight in a couple of weeks as he had in the previous 10 months!!
So off to the drs we went, unfortunatley even many drs don't know much about coeliacs it would seem.  We advised the dr he was on a gluten free diet and yet he proceeded to order an antibody test (which requires gluten to be being consumed).  It was negative so CD was ruled out.  We were advised by a friend with CD to speak to the Coeliac Society and find out more about the testing and if they could recommend a dr who specialised in diagnosing young children.  Anyway we have now found a dr who agrees the previous testing was useless and only accurate way is to do a biopsy, which we are now booked in for on April 30th.  So I guess we will soon know the answer.  It may also answer the question for a huge number of our family who suffer the same symptoms including myself, DH, my mum, my MIL, my GMIL and my GM who sadly passed away from bowel cancer 6 years ago at 64 years of age.

#7 brazen

Posted 17 March 2010 - 05:38 AM

oh missy, that's a sad story sad.gif i hope that you can get the result your son needs from the testing (he is eating gluten now right? lol) good luck with it!

thanks everyone original.gif i'm glad for the opportunity to be able to raise awareness of coeliac disease, especially during coeliac awareness week!

and special thanks to barb from jinkyart for letting us use her gorgeous picture biggrin.gif

#8 Sunny003

Posted 17 March 2010 - 06:13 AM

Hey Karen,
Great write up!
Just wanted to say thanks again for all the info you have slows me with lately, have passedit on, and can only hope they understand the importance of the biopsy.

Your family is gorgeous, thanks for sharing that photo. Oh, down here some allergy group has a list of restaurants and butchers etc that will happily provide you with an allergy friendly meal. Most are very well aware of coeliacs more than other allergies. Might be something like that Aust wide for when travelling?

#9 CheeseRobot

Posted 17 March 2010 - 04:22 PM

Great article Karen!

Like you, I noticed my DD's bloated tummy when she was about 21 months old.  I googled "bloated tummy toddler" and the first thing that came up was Ceoliac Disease.  When i mentioned this to DH he laughed and made a comment about Dr Google.

Needless to say, I followed my motherly instincts and took her to the GP.  Two blood tests and a biopsy later, she was diagnosed with CD.  I cried.  I cried for weeks.  Then we went to a Gluten Free show (where I cried) and I met a woman who's DD was not only Ceoliac but also suffered from a number of debilitating diseases.  After meeting her and her DD I pulled myself together and moved forward!  

So, now, apart from a bit of inconvenience, there is no sadness about DD's CD.  Like your Aroura she is very aware and will always ask before she eats anything (She's 4.5 yrs old now), and like you, I have always cooked fresh food for my kids as well so the whole gluten free thing, in the end once I got over the fear, has been relatively easy.  Still, I must admit, when I go to the shopping centre with my DS its nice to be able to share my lunch with him!!!

Anyway, thanks again for your story and here's to the vaccination being available in the next 5-10 years!



#10 ~Billy~

Posted 17 March 2010 - 09:03 PM

So proud of you Karen for talking about your experience here.  You persevered and you got the results.  Rora's very lucky to have you for her mummy (and especially because you're THE Thermomix Queen!).

All the best to you, Rora and your family.

xxx


#11 melaine

Posted 28 March 2010 - 08:36 PM

My son is just about to have the gene test but the GP seems to think it's very unlikely he has CD because he would be very sick if he did...

He has been complaining of stomach pain, gets bloated, has floating stools and regressed with bowel control. What other symptoms did your daughter have?

I have the antibodies (was tested years ago pre gene screening), but my biopsy was normal at that time.



#12 brazen

Posted 29 March 2010 - 05:33 AM

QUOTE (lissame @ 28/03/2010, 09:36 PM) <{POST_SNAPBACK}>
My son is just about to have the gene test but the GP seems to think it's very unlikely he has CD because he would be very sick if he did...
it's actually possible to have CD with no symptoms so your gp is a bit clueless i think  cool.gif  have a read of this document, it's very good, and perhaps give a copy to your dr...
http://www.coeliacsociety.com.au/downloads...20diagnosis.pdf

good luck original.gif

Edited by brazen, 29 March 2010 - 05:36 AM.


#13 jules363

Posted 30 March 2010 - 08:02 AM

Thank you for sharing your story, Brazen.  Georgia is at high risk for Coeliac disease due to having Down syndrome, and has an annual blood test, which has so far been fine, and she has no symptoms.  I tell you something, I have enough trouble putting a gluten containing meal on the table for the family every night, cooking is neither a passion, nor a strong point, and I fear it greatly if it ever happens!

That is a great photo of Rora, looking so healthy.  Her bloated tummy photo always breaks my heart, too.

#14 melaine

Posted 30 March 2010 - 02:30 PM

Thanks Brazen. I guess we'll just see what the gene test says and go from there. original.gif

#15 ~Danni~

Posted 08 April 2010 - 09:45 PM

Thanks for sharing this Brazen!  You have been such good support for me and Paige since she was diagnosed with Coeliac disease in November last year!  Since being on a GF diet, she has gone from strength to strength!

#16 brazen

Posted 09 April 2010 - 06:34 AM

it is amazing to see how well they do isn't it danni!

jules, hopefully georgia will steer clear, there are lots of worse things than CD but it's just another complication you don't really need lol




1 user(s) are reading this topic

0 members, 1 guests, 0 anonymous users

 

Ada Nicodemou: 'I can never be completely happy again'

Home and Away actress Ada Nicodemou has opened up about the loss of her stillborn baby.

10 things to consider when you're thinking about trying for a baby

Before you start tracking your menstrual cycle and reading up on the best positions to get pregnant, there are a few other things you may want to consider.

Baby Gammy's dad tries to claim charity money

The biological father of baby Gammy has reportedly tried to access charity money raised for the little boy's medical costs.

How special surgery and IVF can create a post-vasectomy baby

Cricket legend Glenn McGrath and his second wife Sara are expecting their first child together, thanks to IVF and a delicate surgical sperm retrieval process that helped the couple to conceive.

Belle Gibson's mother 'disgusted and embarrassed'

The mother of disgraced wellness blogger Belle Gibson has accused her daughter of lying about her childhood in an attempt to garner public sympathy.

Life On Mars

It's men who need 'retraining', not women

We are all responsible for our own behaviour. Telling victims to harden up is wrong.

Doctor's mobile phone 'left inside c-section mum'

A new mum claims a doctor left his mobile phone inside her after delivering her baby via caesarean section.

I'm a mum and I'm following my dreams

I want my kids to know that no matter what happens in life, you can still be who it is that you've always wanted to be.

Those first daycare days

I had this innate 'mum' moment the other day.

'If one person had listened, my life would have been so different'

Katherine's father will die in prison for the horrifying sexual abuse of his daughter. Yet she is the one with the true life sentence.

Couple to celebrate terminally ill baby's birthday in unique way

Baby Jai Bishop has lived at Starship Hospital for the past seven months, with his parents flying back and forth from Hokitika, 1100km away, to be by his side.

This new plan undermines breastfeeding and baby health at everyone's expense

Mothers, babies, the health system and the wider society are going to pay the price of this new budget.

Trying to understand why your baby is upset

Working out what?s underlying your baby's fussiness can be a case of trial and error. Here are a few common causes and how you can remedy each one.

When those you love judge your parenting

In today's society, never has it been harder to parent without judgment. But what about when judgment is coming from closer to home?

Don't play the victim blame game with family violence

It's not a woman's job to teach violent men how to behave.

11 truths about having two under two

When I told my mothers? group that my husband and I had started trying for our second baby they told me I was crazy. Now I can see why.

'How do you say goodbye to someone you've only just started to get to know?'

New mum Sarah Sutton was faced with a shattering scenario no person should have to endure.

It's a ... boy! Couple welcomes son number 13

"It's a boy!" That's the phrase Kateri Schwandt has heard in labour delivery ward for the 13th time in her life.

Six reasons to go for a walk

Can't find time to get to the gym? It could be just as beneficial to put your baby in the stroller and go for a walk.

Seven questions you should be asking about your health cover

If the last time you assessed your health cover was five years ago, there?s a chance it may no longer suit your needs. To ensure it?s still right for your family, click here for seven questions to ask.

 
Advertisement
 
Advertisement
 
 
 

What's hot on EB

Where are the childcare places?

It?s all very well to encourage women to work if they choose to, but how can the measures lead to increased workforce participation when women are once again left holding the baby?

The pain of not having babies and not knowing why

After seven years of wishing, hoping, crying, punching pillows and shouting "why me?!", the end result is more than I ever thought possible.

Getting your family finances in order

Whether you're after a new car for a growing family, a bigger house, or are just fixing up your finances, here are the basics on borrowing.

Mum shares graphic selfie to warn against tanning

A mum has shared a graphic photo of her skin cancer treatment as a warning to others.

Does parenthood make us happier?

We can certainly gain higher levels of happiness when we become parents, but the trick is to not get overwhelmed by the pressures of raising our kids.

No, having a dog is not like having a human child

It's obvious these people dote on their pets, but they're barking up the wrong tree.

Toddler styling

Seven things my toddler taught me about my home

My standards at home were never that high but having a two-year-old has taught me to be cool with chaos.

Australia's top baby names of 2014

The numbers have been crunched and it's official: Australian parents are having a bit of an 'O' moment.

How to set up the perfect nursery for your baby

You'll soon be meeting your baby, but you've got one big task to get done first: setting up a comfy, calming nursery you'll both be able to enjoy.

Childcare rebate: tougher rules for stay-at-home mums

A new form of activity testing will be introduced to ensure the highest subsidies go to parents who contribute the most to the workforce.

The women who desperately need more support in pregnancy

For women suffering from chronic morning sickness or hyperemesis gravidarum, pregnancy can be the roller coaster from hell.

When labour doesn't happen and you're induced

I never actually went into labour - so by 42 weeks I was booked in for induction.

Mum's grief for triplets inspires change

The death of Sophie Smith's triplet baby boys has motivated the half-marathon mother and her team to raise $1.25 million for charity.

The best advice for treating head lice

Just like a horror movie ... THEY'RE BAAAAAACK. So what works in treating and avoiding head lice and nits?

Overdue and over it

A watched womb never labours ... or at least mine didn't.

Parenting an early walker

Watching your child take their first wobbly steps is one of the best parenting highs you'll ever experience. But with that high comes a new reality.

Baby-led weaning worked for us

My baby wasn't interested in food - until we tried something new. Now she's eating it all, and it often comes from my plate.

'Paralysed bride' becomes a mum

Rachelle Friedman Chapman was preparing to marry the man of her dreams when tragedy struck four years ago.

 

Top baby names

Baby Names

The numbers are in and we can now bring you the 2014 top baby name list for Australia.

 
Advertisement
 
 
Essential Baby and Essential Kids is the place to find parenting information and parenting support relating to conception, pregnancy, birth, babies, toddlers, kids, maternity, family budgeting, family travel, nutrition and wellbeing, family entertainment, kids entertainment, tips for the family home, child-friendly recipes and parenting. Try our pregnancy due date calculator to determine your due date, or our ovulation calculator to predict ovulation and your fertile period. Our pregnancy week by week guide shows your baby's stages of development. Access our very active mum's discussion groups in the Essential Baby forums or the Essential Kids forums to talk to mums about conception, pregnancy, birth, babies, toddlers, kids and parenting lifestyle. Essential Baby also offers a baby names database of more than 22,000 baby names, popular baby names, boys' names, girls' names and baby names advice in our baby names forum. Essential Kids features a range of free printable worksheets for kids from preschool years through to primary school years. For the latest baby clothes, maternity clothes, maternity accessories, toddler products, kids toys and kids clothing, breastfeeding and other parenting resources, check out Essential Baby and Essential Kids.