Which offers you the best information... - Gluten Free Guerr...
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I feel that online coeliac forums can be a little dangerous if you were to use it as your single source of information, since the advice is often based on information from an unreliable source, or misinterpreted or coming from people who are either self diagnosed yet super happy to spread information that may or may not be accurate. I would suggest to always seek medical advice and eating, lifestyle advice from medical and nutritional experts.
That's good advice Moon. Everyone who signs up to this forum does so by agreeing to the terms of use and they urge people to seek medical advice vs reply on information on groups like this. However, peer to peer groups can offer practical down to earth advice of living with a condition which can't always be provided by Doctors. Coeliac Disease is interesting as it often seems to fall into a 'no mans land' of Doctors referring issues to Dietitians and they referring patients back to Doctors for advice. From feedback from our members it seems that people feel that Doctors don't always understand CD and dismiss it as a gut/ food issue vs an auto-immune condition. Whereas Dietitans are often loathe to advise too much as they feel it crosses into the medical sphere. So we're interested to see what results score the highest.
Moon, I agree that is is FAR from ideal, but if doctors/dieticians are not even aware of the NHS's own guidelines, and give advice which directly contradicts research findings, sadly they are not much use as a source of information. I have blogged about my experiences in "behaving myself & seeking proper medical advice" - as others have done also. How I wish it were otherwise - it's encouraging that some folks HAVE voted for dieticians.....
I agree with you both. I didn't refer to GFG forum. And BeckyF, I haven't read your blog, so I'm not commenting on that. Do you have a link?
I mean that in general terms that I've seen some very misleading and ill informed advice on for instance some (but not all) Facebook groups etc.
Coeliac UK is a good source for information, but sometimes I feel that their advice is based on which advertiser pays the most to get their message in print.
What's desperately needed is for the leading scientists, doctors and researchers world wide to work together and a bring out the best information there is so that everyone, both patients and people working in various areas of the medical profession, can be educated. It's too confusing to read so many different statements giving conflicting information.
Very true Moon. Maybe one day we'll see that. Thanks for confirming. If you type Beckyf into the search bar or scroll through blogs you should find Becky's post. The site is evolving so shout if it's hard to find.
But you must ensure that the dietician is versed in coeliac information. When I was having problems with my villi recovering after 4 years it was felt that I may be getting gluten from my diet.
So a dietician was called in. After research she decided I was getting gluten from a patch I was wearing on my skin.
I told her that this was silly as you need to ingest gluten and can't get it by absorbtion. She still to this day reckons I am wrong. So we need to be careful.
Absorption through the skin? That is an interesting one. Patches are designed to do that.
At the weekend I cooked a barbeque for friends and family using food with gluten ( burgers, sausages etc). I didn't eat any but I was handling the food out of the packs onto the bbq. Could that be the reason why I had a dodgy tummy the following morning, I wonder.
Nobody has ever advised me not to touch food containing gluten; just to avoid eating it.
I wonder if any coeliacs who have to handle food containing gluten are able to comment.
My GP acknowledges I know more about CD than she does. It's in our interests to read and keep up with the latest research. The coeliac society in my neck of the woods is fairly mainstream. They believe CD is the only gluten related disease on the block.
The coeliac forums are a great place for the 900 questions we all have and let's face it most of them are about what to have for dinner.
We're not children. Posting a medical question on a forum has a really good chance of finding someone who has faced the same issue. Following that up and knowing what questions to ask a Dr gives us a headstart.
We all need to take responsibility for our own health.
Yes Phil the patches (medication) are absorbed through the skin and are absorbed by and into the bloodstream. Gluten must be ingested via the mouth to lead to the small intestine. Re the handling of gluten containing foods you do need to be carefull as if you were to put hands to mouth before washing you could ingest gluten. I find after feeding fish, dogs that I do need to wash my hands. Hope this helps explain my post.
Roscoe
Sadly my Mum and I had to work it out by ourselves. We were sent to a dietician who was utterly rubbish. We asked her what things contain fructose, for example invert sugar syrup is a fructose-glucose mix. Her reply was, "try it and if your ill don't eat it again! "
I resorted to looking ingredients up on the internet.
I haven't had a lot of information on wheat and gluten intolerance, but I find this is easier to spot than fructose.
The "best" information comes from Coeliac societies - its accurate, practical and usually covers a wide range of issues, both medical and lifestyle.
The most accessible info is often online forums and blogs, but it isn't always entirely accurate.
GPs vary considerably - some are really clued up, and others don't know as much as the average patient.
