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

 

Share the little things that make you smile

We're giving away a Mountain Buggy nano, the ultimate travel stroller - and here are some of the great entries so far.

Toddler pleads for return of "stolen" nose

A two-year-old's reaction to a game of "got your nose" shows it doesn't take much to make a toddler cry.

The 15 photos new parents share (and five they don't)

From the first scan photo to the baby covered in cake at their first birthday party, there are 15 photos most parents seem to share - and some they don't.

Doctor sings first Happy Birthday to newborns

His job is to deliver babies, but this US obstetrician also has a unique way of celebrating the miracle of life.

Breastfeeding friendly café goes viral

A photo of a breastfeeding-friendly sign in a cafe has been posted to Facebook and shared by hundreds of mums around the world.

First look at the Bugaboo Bee3

The newest Bugaboo Bee ? the Bee3 ? offers a variety of improved features, including a much asked-for bassinet and a rainbow of colour combinations.

Childcare costs, not paid leave, the real issue for parents

Given the choice between maintaining their wage for six months to have a child, or having a reduced rate of pay for a time but a better deal on childcare when returning to work, there are no odds on what most working parents would choose.

Win a Mountain Buggy nano

We?re giving away the new Mountain Buggy Nano - the lightweight travel buggy! So show us the little things that make you smile for your chance to win.

We lost three babies in two years

Our first pregnancy ended the way we all expected it to - with a healthy, happy baby in our arms. What a true blessing he was, for we were not to know the heartache we were about endure.

Family turned back from doomed flight MH17

'There must have been someone watching over us and saying, 'You must not get on that flight,' says mother who narrowly avoided boarding the Malaysian Airlines flight which exploded in mid-air over the Ukraine last night.

The myths and facts about "normal" breastfeeding

When it comes to successful breastfeeding, there is a wide variety to what is "normal", according to new research.

Adorable Skeanie loafers for kids

Your little toddler or preschooler can now get their nautical on with a new range of classic loafers by Australian show brand Skeanie.

My baby is hypermobile

For months, I have been telling myself not to worry that Jasmin isn't crawling or walking. This week I heard the term hypermobile for the first time.

When you don?t bond with your baby

They say that there is no bond greater than the bond between a mother and her child. But for some women, the mother-baby bond takes more time and effort to develop.

Yumi Stynes: Having a baby after a 10-year break

After a long break, Yumi Stynes gets a reminder of the pain - and the pleasure - of giving birth.

Grieving father asks for help to Photoshop his daughter's image

When Nathan Steffel's daughter Sophia died from a liver condition at just 6 weeks old, he reached out for someone to create a beautiful image of his little girl.

Raising kids in a 'low media' home

Can you imagine a life without TV or computers? Some parents are opting for a low-tech, screen-free life for their kids.

Download now: Essential Kids Activity Finder app

Got bored kids? Quickly find the best activities for kids wherever you are in Australia with the Essential Kids app.

 
Advertisement
 
Advertisement
 
 
 

What's hot on EB

Win a Mountain Buggy nano

We?re giving away the new Mountain Buggy Nano - the lightweight travel buggy! So show us the little things that make you smile for your chance to win.

Be careful what you say, your baby is listening

The importance of speaking to your baby even if they are not old enough to answer back has been highlighted by new research.

WIN two Sea-Bands plus $1000

Three lucky fans can win a Sea-Band Prize Pack valued at over $1000 each, which includes two Sea-Bands plus a $1000 Eftpos Gift Card!

The beautiful moment a baby was born at the side of a road

It's not where she expected to give birth, but mum Corrine Cinatl is delighted that her daughter's roadside arrival was captured in a series of beautiful photos.

Doctor sings first Happy Birthday to newborns

His job is to deliver babies, but this US obstetrician also has a unique way of celebrating the miracle of life.

The Nappy Collective starts new drive

It's that time of year when the dedicated volunteers at The Nappy Collective do their bit to help out mums and children in need - and they need your help.

Baby shower cake wrecks

From misshapen cake babies to questionable text, from odd colour choices to internal organ recreation, these are the baby shower cakes that taste forgot.

Photographer captures the beauty of adoption

The love of a family is usually tough to capture on camera. This is an exception.

Pregnancy progression photo ideas

Want to record your pregnancy as your belly grows? Here are some creative, fun ideas for photo shoots along the way.

The myths and facts about "normal" breastfeeding

When it comes to successful breastfeeding, there is a wide variety to what is "normal", according to new research.

Tin can craft and DIY ideas

Got a few old formula, Milo or coffee cans around the house? Use these fantastic upcycling ideas to create items for around the house and yard.

Dads meet their newborn for the first time

Emotional photos of two fathers meeting their newborn son have resonated with viewers worldwide, attracting thousands of Facebook likes and shares.

Skin safety isn't just a summer worry

Lax about the slip slop slap with your kids as weather turns cooler? Here's a reminder as to why we have to remain vigilant for our children?s future health.

Personalised baby gifts

We've scoured the internet to find gorgeous personalised keepsakes and nursery decor to record baby name and dates. They make great gifts for christenings, name days and birthdays! (All prices in AU.)

Creative sleeping baby photoshoots

See how some parents and photographers have captured sleeping babies in unusual positions and using different props.

DIY kitchen and food hacks

DIY your way to a better kitchen and make cooking easier with our clever hacks. (Some content reproduced with permission from mashable.com.)

Winter warmers for babies and toddlers

Your baby or toddler will be nice and snug in these beautiful and fun winter pieces. Most are hand-made or knitted, and they're all designed to keep your little one toastie - and adorable!

 

Mind, body, beauty, life

Making time for me

We look at your wellbeing, covering health, relationships, beauty and fashion, mind and body.

 
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.