Can Coeliacs eat food containing beta-glucan?

[Margaret-C]

[Lynxcat]

Hi Margaret, It is dependent upon where it is sourced. Natural sources include the bran - outer husk of barley, oats, wheat and rye; sometimes baker's yeast; sometimes from seaweeds and occasionally from mushrooms usually Shitake, Maitake and Reishi.

It would probably be best to avoid unless you can be absolutely positive that it was sourced solely from seaweeds or mushrooms.

[Margaret-C in reply to Lynxcat]

That is very helpful, thankyou. I have been eating Flahavans Irish porridge for breakfast for some months now with no adverse affect. After several comments from others about eating oats, I checked the ingredients and saw beta-glucan. Will mention this when I see my Gastroenterologist in July and really hope I continue to eat it as it is a delicious start to my day!

[Hidden]

I'm not trying to contradict lynxcat here as Beta Glucan can indeed be made from any of the forbidden grains. But they will almost certainly be labelled as gluten free regardless of the grain source. This is because when a grain is turned into sucrose (a polyol) it is deemed to be so processed that the ''gluten'' has been removed.

And regardless of their grain source polyol's do not have to reveal their grain source. The FSA say it is so that manufacturers can change the grain source of the polyol and not have to change the label. Whereas in some countries manufacturers have to list the source of the grain.

So my question is; are you having an adverse reaction to it?

[Margaret-C in reply to Hidden]

Thanks Jerry. As I mentioned in my reply to Lynxcat, no adverse reaction to my knowledge but will be interested to hear what is said at hospital visit inJUly.

[Hidden]

Hi Jerry totally interesting the different laws country to country. I Australia if Beta Glucan was derived from a gluten grain it would need to be declared, such as " Beta Glucan derived from wheat".

Makes it easier to decide. It must be a minefield for you guys.

[Margaret-C in reply to Hidden]

Certainly is Roscoe but onwards and upwards

[Lynxcat]

It's a good job we have this site to pool our knowlede. It sounds as though we should by lobbying for the laws they have in Australia Roscoe!! Wonder if we could ever possibly achieve such strong laws for food labeling over here?

[Hidden in reply to Lynxcat]

Hi lynxcat, I've tried this and ending up going around in circles as CUK control everything to do with coeliac in the UK. And they were not interested and just quoted codex. This was when we had 200ppm the US had 20ppm and Oz had 5ppm.

So I tried my MP who passed my letter onto Gordon Banks who chairs the APPG (all party political group) which lobbies parliament for coeliac to get food on prescription. And GB supports CUK and my MP sent me the letter GB sent to him about my comments and it talked about me in the third party and was condescending and I would never vote for him ever. So I am glad he is not my MP as I'd end up voting for the Raving loony party!

I'm a self confessed idealist so I do not understand why depending on what continent we live there are different stances on the gf diet.

Being a cynic I saw it as the ''curse of codex' in that because we can get codex wheat on prescription everything with similar levels of gluten have to be deemed as gluten free. So UK coeliac are ''allowed'' to eat malt from barley. codex wheat and oats. And what is a super sensitive coeliac in the UK? One who cannot eat codex wheat, malt or oats.

When to me a coeliac is a coeliac full stop regardless of where we live.

This is why I am not a member of CUK as I didn't see them as supporting me or my diet.

So the only way I would lobby MP's again would be en masse.

[Lynxcat in reply to Hidden]

Hi Jerry, I think that sometimes charities can become too large, have too many fingers in the pot, too many people pulling in too many different directions and they lose the essence of themselves what they stand for, their beliefs and their aims which all drift and dribble away.

Many of the larger charities shock and apall me especially when I see them using people's hard earned money in ways that I consider being wasteful. I am constantly getting letters through the door begging for money - they are not however just begging letters - they contain wasteful, expensive items as gifts such as pens, placemats, birthday cards, bookmarks, gift tags, and so on and so forth .. with these included, plus postage it amounts to thousands upon thousands of pounds of wasted funds - so they obviously do not need my paultry assistance!

I think when people are fighting for changes they need to be fit and lean and with a purpose all pushing in the same direction.

I was pushed towards CUK and I have to be frank, I do not feel that they have expanded my knowledge into my condition at all. So I will not become a member when my free trial period has expired.

I have become ill on so called gluten-free items and therefore now do not trust the words 'gluten free' especially in ready made foods. I now tend to look for foods that are not made from any foods containing gluten, etc and find myself feeling much better.

It is an immense battle to try and improve things for our lot but there are probably thousands of coeliac out there who have all kinds of complaints that they wouldn't necessarily have if we had stricter controls in our country. We all perhaps need to look for ways that can make this happen. At the moment our feet are all set in concrete and we are unable to move but all we perhaps need to do is pick up a chisel and begin to chip away and loosen our constraints!

Regarding MP's - some are much better than others - and even when they do an outstanding job they may in the end let you down. You can inform them and use them as they use you but they are on a salary and always looking for new interests.

You make such sense so please never use your will to fight!

[Lynxcat in reply to Lynxcat]

Last sentence should have read ' You make such sense so please never lose your will to fight!' Lol!!! I do wish there was an edit button don't you?

[Hidden in reply to Lynxcat]

Thanks Lynxcat, now as for editing posts, if you look at a question or blog by another posters name is ''report'' and by your own is ''delete'' so what I do is cut and paste my reply and repost it omitting the mistake and delete the erroneous one.

[Margaret-C]

We can live in hope - onwards and upwards !!

[Hidden]

Hi all despite what I see from this site about coeliac societies it has been lobying by the coeliac society of Australia that has changed the packaging laws of Australia/New Zealand.

[Margaret-C]

May be of interest ...... avaaz.org