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March 2010 #1 - Auroras Gluten Free Life


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#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




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