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Posted 5/17/2005 5:17:27 PM


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Last Login: 5/19/2005 10:22:00 AM
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Hi Janet

What is the best piece of advice you were given when you were first diagnosed with the coeliac condition?

Plus: if you could change anything through the process of you being diagnosed what would it be?

Post #107
Posted 5/18/2005 3:20:52 PM


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Hi Chris,

Thanks for answering my question yesterday on taking DS gluten and wheat-free bread onboard a plane.

The best advice I had, and would pass on that advice to anyone else diagnosed with Coeliac Disease is:-

 Join Coeliac UK - I found the website full of useful information, and the Food and Drink Directory invaluable when shopping. Although I always update my copy from the monthly additions and deletions list.  I joined my local support group and enjoyed finding out from others how they managed with the diet.

Keep a positive attitude - think of what you can eat and learn to enjoy it.  

 GF food manufacturers  ask them to let you have samples of their products. Try different foods until you find something you like.  Everyone has different taste/texture preferences.  Don't give up keep trying until you find something that appeals to you.

Talk to your G.P. - discuss with your G.P. how you would like additions, changes and deletions made to your repeat prescription.  Encourage your G.P. to become  a professional member of Coeliac UK - it's free!

Find a Pharmacist - I tend to use the same pharmacist where they get to know you and can let you know the latest new products. I always have a pharmacy dispensing label on every item, it helps with stock rotation at home or if there is a problem with the product and also when travelling abroad it identifies it as food for medical purposes. Again encourage them to become a member of Coeliac UK.

In terms of diagnosis - I would like to see more training for G.P.'s so that they are more aware of the condition as being a possibility for their patients.

Most people I talk to feel that it takes too long to see a state registered dietician after diagnosis especially when they feel bewildered on the post diagnosis first supermarket trip. 

I hope you find that useful.

Janet Foster

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