Hi just found this forum and joined and posted a question. Ant responses would be welcomed.

[SilverDreamMachine]

Hi, just joined this community and wondered if there are any asymptomatic coeliacs that have been tempted to eat recently `banned` foods e.g. walkers plain crisps and supermarket own brand cornflakes?

[Irene Administrator]

Hello SilverDreamMachine, welcome to the GFG Health Unlocked forum. Have a look at some previous comments we received when this was asked in a similar question. It is very difficult when you don't experience any symptoms to stick on the bandwagon but when you are fully aware of the fact that damage occurs without the symptoms it's a good prompt to stay as strict as you can to the diet.

We personally don't eat foods which aren't produced cleanly and labelled 'gluten free'. However we know many Coeliac are ok with eating foods produced in factory that handle gluten products.

Have a look at previous comments and see what you think:

glutenfreeguerrillas.health....

[SilverDreamMachine]

Hi Irene, thanks for the quick response. Unfortunately your link doesn`t seem to work. Do you have another way of me accessing these comments?

Re you point about awareness of gluten damage. I do understand the need to keep on a GF diet even though I`ve no symptoms whatsoever. I was asking about those foods that in the recent past were considered OK until `they` lowered the parts per million criterion.

[Irene Administrator]

SilverDreamMachine

For some reason the link says page not found. But if you then type Cheat in the search bar you should see the first found Q is "A GF diet is very strict does anyone rebel again it". It's got 20+ responses so you might find it interesting to read through.

[SilverDreamMachine in reply to Irene]

No sure how I`ve done it, but I`ve found the links you mentioned, thanks for your help

[Lynxcat]

Hi Silver Dream Machine - what a lovely name you have chosen!! Firstly, cereals are often a worry as they usually either have some sort of malt additive or they're made in a factory very closely to wheat and barley products.

There are brands that are made in factories where gluten products are not found such as Kallo brand or Nature's Best brand but with standard cereals there is always a risk unless they definitely confirm otherwise.

Crisps - most brands are safe if they are plain but there are always exceptions - take a look at some of the previous links listed below:

glutenfreeguerrillas.health...

glutenfreeguerrillas.health...

glutenfreeguerrillas.health...

Hope that this is helpful to you. If you want to find other links then it is often wise just to type one word in the Search up above on an item that you are interested in. Just to say though that as foods that are safe for coeliacs and gluten intolerants often in flux situations and hopefully improving all of the time - it is often a good idea to ask again with another question and see if anyone can add anything to previous queries.

[SilverDreamMachine in reply to Lynxcat]

Thanks Lynxcat, really useful info. As I go through the info on the links a) there`s so many opinions and b) not a lot of facts. My initial view is that it`s early days in medical terms re coeliac disease and that over the next 10, 20 years the condition will be much better understoood e.g. my consultant`s answer to why my B12 levels are still low on a GF diet is simply to say this charactersiitic occurs from time to time in coeliac suffers!

[SillyYak]

If you look at many of the facebook pages that provide platforms for discussion of Coeliac diets you will find that many people don't stick to the diet. There seems to be two camps; those that will dip in and out and fall off the wagon; will eat supermarket cereals with barley and anything else that takes their fancy and are obsessed with CAKE and those that are almost evangelical about avoiding gluten, or any derivatives that are normally classed as ok, e.g. maltodextrin.

Personally, since the new law came into place I have chosen to avoid products that were classed as gluten free or suitable for coeliacs before, e.g. Doritos, Walkers crisps, Seabrooks crisps. I chose to take it as an opportunity to see if sticking to the new 20ppm food items would make a difference in m health. Although I didn't have any obvious coeliac symptoms at diagnosis or when I was eating the old style 200ppm gf foods.

What I have noticed is that I am less tired, less bloated and have fewer skin problems. Although the new legislation in some ways have restricted what foods I can now eat, in many ways its forced me to be more creative about what I eat and drink. Now I tend to eat much less packaged, processed fast food ie.. crisps. I do a lot more cooking with ingredients and foods that I wouldn't have considered before. My biggest moan is the new term 'no gluten containing ingredients'. It means damm all. Food producers can use it where they create products with no gf ingredients in the same facility as gluten products. Yet the FSA web site clearly explains that there is no legal basis to the term and there also appears to be no mandatory checks to see if manufacturers are taken all reasonable precautions, i.e. what actual due diligence processes do manufacturers have to comply, with to ensure that the ‘no gluten containing ingredient’ product has not been contaminated? It seems the answer is none. Yet hardy any coeliacs, especially newly diagnosed ones, seem aware of this.

[SilverDreamMachine in reply to SillyYak]

Hi SillyYak, thanks for this. Not sure I can access facebook as I don`t use it :). Your new eating regime is pretty much how I live. I have been very strict for a number of years, but when the Docs couldn`t explain why my B12 has started to decline (this was how I was initially diagnosed) I have become a little more sceptical about treatment and whether say standard supermarket oats are just as GF as the more expensive varieties.

[SillyYak in reply to SilverDreamMachine]

Have you had a blood test to check your parietal cells and whether you have Pernicious Anaemia? Another autoimmune deficiency that can go hand in hand with Coeliacs. I have PA and get B12 injections every 3 months. Also had biospy taken to confirm PA when I had endoscopy.

Re the Oats, if you've not had symptoms it's tempting to eat them and ignore possible consequences. Out of interest what does your blood test show for your gluten levels? Have you hit 0 yet?

[SilverDreamMachine in reply to SillyYak]

Yep not got PA thankfully, sorry you`re blighted with this also. Have recently had a blood test and was judged to be OK, but didn`t know there was a `score` so will investigate. May take some time to get an answer.

[Lynxcat in reply to SillyYak]

I think that one of the main problems is that doctors do not have information readily at hand. There should be an easy-to-read booklet produced for coeliacs that can tell them at a glance what foods they near to steer clear of for all time and the necessary basics to survive without ill health. By coeliacs not being informed from day one of their diagnosis means that they are far more likely to be consuming gluten without the knowledge of doing so and this then may lead to a probable 300 plus diseases they could go on to develop. Equally there will also be the possibility that by regular ingestion they may develop Refractory Coeliac Disease and/or Dermatitis Herpetiformis.

It would be lovely if such a booklet could be produced (may be with some input from our Forum) so that coeliacs aren't left to flounder about in the dark.

We all learn - but it is a slow process and often is accompanied by our many mistakes and when you think about it, to have to learn about your health through such a means cannot be right.

[SillyYak in reply to Lynxcat]

Very good point Lynxcat. There are so many Coeliacs floundering about in the dark in the early days without any support. I've learnt so much from being part of the Gluten Free Guerrillas support . They were one of the first facebook pages out there which provided a forum for people to ask questions. I enjoy being part of this group as well as it's unusual to have somewhere to discuss health issues surrounding Coeliacs.

[Lynxcat in reply to SillyYak]

I totally agree with you SillyYak. The one beautiful thing about this forum is that you can ask anything and everything and nobody judges you. Discussion is often the best way for us all to learn and retain the knowledge about our health. I think being Coeliac or for those who are Gluten Intolerant it is important to be able to ask about things and share what we each know without ever being judged.

We, here in the UK are in a sense at a disadvantage to the US as so many people had access to computers and the Internet before our turn came along. Many of the US forums and sites are therefore very well established but I think we, here, are so much more open and replies to questions are far more detailed. I also think it is good that questions and blogs about topics are often re-blogged and asked again because it helps to keep everything fresh in our minds - and there is so much that we have to know in order to stand any sort of chance to either become healthy or remain healthy - and health is everything to us all!!

[zoombie in reply to Lynxcat]

Hi Lynxcat - I have pointed both my doctor and dietitcian to the About.com web site ref CD and DH and both have said it is a very informative site. I certainly found it useful as both of them did not know very much about either condition!

[Lynxcat in reply to zoombie]

Hi Zoombie, I think that very few doctors or dieticians appear to know all of the facets regarding our diets ... it's a very long and tiring learn and I often wonder will we eventually know everything? Lol! It's a really good idea to show them where they can aspire to learn more though as that can only be a good thing for you. Perhaps they may even recommend it when they go to their various conventions. We can only hope.

[1stgls]

I agree that there should be a simplified system for finding GF stuff. I had the Directory when I joined Coeliac UK and it is soooooo hard to find items in it if you do not know the manufacturer, especially when one chocolate company becomes part of another so although you know the original company, you do not know the new company ( it was not so long ago Snickers used to be called Marathon !!! Cif was called Jif {no, I do not eat Cif lol} )

My biggest peeve is that if something is labelled GF it costs so much more---I have just looked at a pack of Scotts Porridge oats which MAY be contaminated with gluten --so not labelled GF and it is a third of the price of the GF free stuff

[SilverDreamMachine]

Hi 1 stgls, I`m with you on the price of gf oats. I researched a supermarket`s own label oats that specifically said on the packet that it was unsuitable for coeliacs. Following a discussion with the company it turns out they only produce oats in their factory so they are gf (bar oat gluten), but the `customer` [the supermarket] insists they label them not coeliac suitable. I can only assume this is to push coeliacs into buying the more expensive varieties?