Confused

[covsooze]

I did loads of socialising over the weekend and was extremely careful not to eat anything with gluten in. Everyone I was with was very helpful in providing me with gluten-free food and being careful about cc. And then I go and ruin it all, by drinking what I thought was ordinary orange squash (without checking - I always check!) and it turns out to be orange barley water. how stupid am I?!! But even stranger than me failing to check the ingredients is that I've (apparently) had no reaction Even crazier still is that when I went to my first support group meeting, the cold drink that was available was barley water!! (I didn't drink it). Am I missing something here? Surely barley malt extract contains gluten?

[Ursa Major]

I am totally stumped on this one, as it clearly contains barley and should have gluten! Here is a link to a recipe in case anyone has any doubt:

Open Original Shared Link

Maybe you're going to have a delayed reaction? Even though, of course, I hope you won't, it is possible.

[gfp]

Was this a Coeliac UK support meeting?

CUK seem determined to keep the 200ppm level regardless of other scientific evidence.

I would think this is an expression of "a little is OK" which should be their motto!

[covsooze]

gfp: yes it was a CUK meeting. the whole 200ppm is illogical to me. I appreciate we can't always be 100% certain that we've got no gluten at all in what we eat, but it makes no sense to go deliberately eating it! If I am very thirsty and drink loads and loads of barley water, there must become a point when I'll get ill from the gluten?!

[Ursa Major]

gfp: yes it was a CUK meeting. the whole 200ppm is illogical to me. I appreciate we can't always be 100% certain that we've got no gluten at all in what we eat, but it makes no sense to go deliberately eating it! If I am very thirsty and drink loads and loads of barley water, there must become a point when I'll get ill from the gluten?!

You're right, it is totally illogical to consume any amount of gluten on purpose. What if in one day you drink barley water, eat something with wheat starch (which in Europe they claim is no problem), and eat several other things that have 'safe' levels of gluten in it (I personally don't believe there IS a safe level), eventually you should think you would react. And maybe you do at even the very low levels without obvious symptoms. It seems all wrong.

And serving barley water at a celiac disease support meeting sounds like an insane and irresponsible thing to do. Is there nothing else they could be serving, that is naturally gluten-free?

[gfp]

You're right, it is totally illogical to consume any amount of gluten on purpose. What if in one day you drink barley water, eat something with wheat starch (which in Europe they claim is no problem), and eat several other things that have 'safe' levels of gluten in it (I personally don't believe there IS a safe level), eventually you should think you would react. And maybe you do at even the very low levels without obvious symptoms. It seems all wrong.

And serving barley water at a celiac disease support meeting sounds like an insane and irresponsible thing to do. Is there nothing else they could be serving, that is naturally gluten-free?

Unfortunately that's the problem. They want to serve the stuff their advertisers sell. Their advertisers want 200ppm because they can make more profit than 100% gluten-free... in this case its a regional support group but they are put under pressure to play the advertisers game.

I expect they are trying to get the newish strict allergen European labelling law revoked in the UK which they campaigned and misadvised against but went through anyway.

CUK refuse to admit celiac disease has symptoms other than villi being damaged and refuse to accept blood testing ...

(Even though they contributed to research which has shown neurological symptoms to be fact they have buried the research and those in the know are banned from discussing it.

[Ursa Major]

Unfortunately that's the problem. They want to serve the stuff their advertisers sell. Their advertisers want 200ppm because they can make more profit than 100% gluten-free... in this case its a regional support group but they are put under pressure to play the advertisers game.

I expect they are trying to get the newish strict allergen European labelling law revoked in the UK which they campaigned and misadvised against but went through anyway.

CUK refuse to admit celiac disease has symptoms other than villi being damaged and refuse to accept blood testing ...

(Even though they contributed to research which has shown neurological symptoms to be fact they have buried the research and those in the know are banned from discussing it.

Yuck, doesn't the safety and wellbeing of the many people with celiac disease mean a thing to them? I thought it's difficult here, but I see that living in the UK with celiac disease is much more of a challenge.

[chrissy]

serving barley water at a celiac support group meeting????!!!! maybe it was someone's idea of a sick joke? i'm just shaking my head in wonder over this one!!

[covsooze]

Well, I do feel like I've been glutened but is it likely that it's from Sunday's barley water this long afterwards?

I agree about the problems with being a coeliac in the UK. On the one hane, we can get quite a bit of stuff on prescription, but on the other, we don't know if we are being slowly glutened. My GI and the CUK magazine have both said that coeliacs don't have any more or less chance of having food intolerances than other people I shall stick with reading this board for my advice

[taz sharratt]

Yuck, doesn't the safety and wellbeing of the many people with celiac disease mean a thing to them? I thought it's difficult here, but I see that living in the UK with celiac disease is much more of a challenge.

your not wrong there girlie. its the wheat thing i cant get my head around, they say that you CAN eat wheat if you are celiac.

[VydorScope]

Well, I do feel like I've been glutened but is it likely that it's from Sunday's barley water this long afterwards?

It could be, you would not be the first by a long shot to report a delayed reaction. My son usally reacts with in 4-6 hours, but everyone is a little different.