I've just been on the NetDoctor website researching something about my son, and when I finished I just thought I'd have a look at their info on CD. Looking through the various subheadings I thought I'd look under 'Digestive Health' as there didn't seem to be anything else jumping out at me - but I couldn't see CD anywhere. I had another look through the main heading and saw 'Allergy and Asthma', thinking surely it won't be there but I had a look anyway ...and of course it was there. Not only that but it was actually headed - 'Coeliac Disease (gluten allergy)'. Aaaargh - IT IS NOT THE SAME THING!
*sigh* ...and calm!
Written by
kay1982blru
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Yes Kay it's very irritating and mis-leading isn't it. Have you tried emailing the site so they can amend it - every little bit of awareness raising helps ; )
Yeah I e-mailed the site straight away, I was so annoyed! It's 1 thing when the general public are unaware because really unless you're affected by it why would you? But a site supposedly helping and informing people about medical issues should really be better informed.
That's terrible, I have an intolerance and don't react well to it, being gluten sensitive would seem to be an allergy and it would seem fair to label sensitivity as such. BUT I fully understand CD is not simply an allergy, I wonder if they haved lumped it all together...
Kay, you're right, a medical site really should be more accurate (especially for those of us looking for possibilities etc. the internet is what we look at in between those valuable few minutes with consultants)
Information gained from websites are not accepted by healthcare professionals courts,tribunal services. However they all use the Internet for the same purpose, most use patient uk.
I say this having a headed letter from my consultant dermatologist stating that his diagnosis is 1) Complex Coeliac Disease. 2) Formaldehyde Allergy. Which was supported with evidence from the MHRA, Medicines and Healthcare products Regulatory Agency re ingredients producing formaldehyde, also that some ingredients in the GF foods also produce Formaldehyde. This was also researched on the Internet. Atos Healthcare do not accept this. Tribunal Service have avoided it using CD as an excuse.
Trouble is no professional likes to think you might know more than them about your health.
This is better than nothing I suppose although it doesn't really address the problem I had which was that CD isn't an allergy.
Pretender I can't imagine having more than one issue to contend with, I find CD frustrating enough! Sonianin I know what you mean, it can be very easy to confuse it with an allergy and it would probably be easier to explain if it was - to other people and myself! Perhaps if I had an allergic reaction it would be easier to stick to the gf diet without getting tempted to stray!
And the really scary thing is that it says it has been "Reviewed by Health Advisory Council , Coeliac UK" !!!!
Also contains omissions: no mention of malt, malt vinegar, rusk, maltodextrin, modified starch, dextrose which may be gluten-containing ingredients (and quite relevant as a hidden source of gluten)
And errors as it says wine is OK, but this often cleared using gluten as finings.
To be honest, as soon as I saw it described as an allergy I looked no further! I just thought 'well, if they can't even get the basics right then there's nothing for me to learn here'...
This is soooo annoying. I seem to spend my life explaining to people, and may of them health care professionals, that Coeliacs is NOT an allergy..Ughh I feel your pain..
Yeah, my husband still doesn't really understand it either - he feels that alot of conditions these days are 'made up' - I wish! He's probably a gluten enabler ...tempting me to stray!
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