Since my second diagnosis of CD I had continued health issues relating to the gluten free diet so I wrote letters and persued answers.
My latest is from the Department of Health Parliamentry MP (also of the FSA) and basically if "Very low gluten" does not agree with you try "gluten free" if this does not agree cook with basic ingredients and avoid gluten. In layman's terms just get on with it and keep working to pay your tax's.
Ouch! That rather hurt. 
You might be extremely sensitive, Just my thinking here, but quite a few ultra sensitive Coeliacs also react to the other "cereal" or grass grains. That would also include corn, rices, and sorghum. Quinoa, and teff are seeds and don't have the "gluten" proteins. And there are root based flours.
Have you also been dx'd with lactose intolerance? Sometimes that can go hand in hand too.
Sorry but just an opinion of our politicians and members of the medical profession, these people know very well that there are many things out there that cause ill health and when told or asked questions they bury their heads in the sand its about time they stood up to their responsibility and started looking after our interest. I have avoided Lactose since shortly after diagnosis and have discussed it but of course nothing happens like most issues that go with the condition.
Once upon a time you could rely on the professionals to act in your interest: your MP, your doctor, your bank manager, the police, and your priest.
Now, you wouldn't trust any of them as far as you could throw them.
How long before Britain becomes another Libya?
Why are they called professionals? is this a posh word for salaried?
Do you not get fed up with excuses, passing the buck and seeing others getting paid for failure? I felt safer in the fifties than I do now irrespective of who is involved. Britian is a ghetto ruled by the EU.
Hi Tony, I asked CUK the same question and their reply was codex alimentarius. So I pursued with other continents don't have codex and they have 5ppm or 20ppm and I asked why marmite was classed as gluten free when it was made with spent brewers yeast and the reply was that they do not list foods at the lower end of codex. And if something made me ill then do not eat it. And there's your answer: 1 if it makes you ill don't eat it. 2 And it's about definitions of gluten free. Which I believe has been dictated by the fact that UK coeliac get codex on prescription.
The ultra low gluten wheat starch made by the same manufacturers with undetectable gluten or below 20ppm has been available for years in the US but was no better for bread making than naturally gf flours.
You want the definition of an expert? ex is has been and spert is part of a drip of water.
I'm sorry that you feel the way that you do and react to so many foods, I avoid lots of processed foods for many reasons but I am a foodie and enjoy cookin' n' bakin' so it's diferent for me and I do not react to these poly alcohols derived from wheat. If you go to the FSA site they will tell you that they do not require a change of source for the grain to save costs for the manufacturer. And there's me thinking that the customer was always right. Don't let em get to you thats my advice.
Nice definition, You should be informed of what is in foods and sooner have a choice rather have to avoid because of labelling because of the unknown either by name or by law.
1. you do not know it makes you ill until you eat it. 2.The definition of Gluten Free is that currently there may be 200ppm of gluten, very misleading. would you find nuts in nut free food?
This situation is wrong and needs dealing with in the interests of not only coeliac's but others affected by gluten.
Speaking as someone who has a serious hazelnut allergy AND coeliac disease in the family - the trouble with labelling re: nut allergies, is that manufacturers are SO desperate to cover themselves, that they tend to say that everything "may contain" traces of nuts. I agree that this is safer - and if something SAYS it is nut free, it really, really is. But the flip side is that lots & lots of things are labelled as "unsuitable for nut allergy sufferers" when they have never even seen a nut - and although peanuts are treated as a separate category, there is not usually any distinction between the other nuts which may or may not be there. The temptation to play "Russian Roulette" is very strong indeed....
It should be far easier to avoid nuts than gluten - but because of the super-cautious attitudes, this isn't really the case. There is also no equivalent to the Coeliac UK directory for nut allergies - effectively sufferers are completely on their own, to do their own label reading, and contacting manufacturers if necessary.
I guess the reason for this is that a nut allergy reaction could be instant death - and if this happened in a cafe/restaurant, or as a result of following advice in any sort of "directory" it would be very obvious where the blame lay.....
Of course, if a coeliac eats the wrong thing, that is very serious indeed - but perhaps more difficult to trace back exactly when/where it happened, this means that food outlets/companies are less likely to be sued or have adverse publicity, and hence are far more "sloppy" with their labelling.
Interesting debate guys. My understanding is - and jump on me if I am wrong....is that come 2012 the 2009 Act comes into force which standardises GF labelling across Europe.
I see this as a good thing - how hard has it been going on hols and not knowing what GF / labelling really meant abroad?
2012:
Gluten Free in Europe = less than 20ppm
Low Gluten = less than 200ppm
Now...what I personally find very interesting is that many many food manufactuers have been using 'suitable for coeliacs' for years or 'gluten free'. Now they cannot do so as their products often contain 200pm of gluten. So to avoid extra costs on marketing, packaging, production they appear to be taking the easy route for them and simply 'removing' such labelling so that we are seeing the choice of processed gluten free foods for us diminish. Which is one of the reasons I created GFGs as I feared this would be the case having worked in retail myself in the past. Here's some classic examples: Sainsbury's crisp aisle a well known brand of gourmet crisps - just made with potatoe, salt and oil now just has Suitable for Vegetarians and NO mention of GF on the packet at all. Likewise many cereals in the mainstream aisle do the same.
On the one hand as BeckyF states this is 'just to cover themeselves' and is frustrating as some common sense is needed ref a) the ingredients b) guess work on how the product was manufactured (it could be cross contaminated by seasoning from the 'gluten' flavoured crisps. I phoned a few manufactuers eg Pakat's curry sauces which were previously labelled gluten free and they assured me that a) their production had not changed b) nor had their ingredients c) they had changed their packaging to comply with the new law in 2012...so it also makes me wonder are companies simply trying to save money? How much is the pricy GF crossed grain symbol worth? Is the testing and cost to use the symbol too expensive for producers? On the other hand I'm pleased that where companies that were 200ppm (eg many 'corn' cereals in the mainstream aisles or crisps) are now showing that they're not really 'gluten free' at all. So that newbies and 'sensitive' Coeliacs have a clearer chance and can make more informed decisions about what to eat.
It is worth bearing in mind that many new companies and indys are starting to embrace the change in the law and actually really create and label gluten free foods - which is a refreshing change e.g. freedomdeli.co.uk/ and easybean.co.uk/index.html and lookwhatwefound.co.uk/Page/... Perhaps come 2012 instead of the Free From ailes and freezer cabinets being piled high with cardboard pizzas, cake after 'gf' cake we'll start to see the sustainable, healthy food revolution meet 'Free From' and begin to see some tasty and nutritious naturally GF foods and processed GF foods hit the supermarkets?
In the meantime do tell us what you'd like us to campaign on. Plus don't forget that emailing your supermarket/ tweeting them/ writing on their facebook wall and politely raising concerns/ queries on GF often goes a long way. You often realise that other Coeliacs join in the queries and debates and it's a visible way for supermarkets to assess 'demand' for better labelling and better GF products.
One thing I always try and remember is that over the last 5 yrs - 50 yrs there's been an incredible improvement in the assortment choice for Coeliacs. In many cases the real problem is that like the rest of society we've all gotten a bit lazy and time poor and forgotten how to knock up great GF healthy meals. Maybe the prescription foods for Coeliacs has been partly to blame by simply swapping processed foods for 'GF' processed foods. Going Gluten Free is a huge lifestyle change and behaviour change. Yet it can be very rewarding and exciting - it's a challenge to work with new ingredients and discover ones like Quinoa and Teff that you may never have heard of or looked at before...
Ref ongoing problems on a GF diet
As always - see your Doc/s and ask about
- fructose breath tests
- lactose breath tests
- camera pill (to assess you're healing) as 0 blood tests don't always tell the whole story as I know only too well myself
- realise that it can take years and years for villi to heal, then many years more for them to work properly again
- plus the rest of your body may still be reeling from years of fighting gluten so boost your vitamins / minerals and always ask for yearly blood tests to monitor Iron, Ferritin, B12, Vitamin D, gluten anti-bodies, plus chlorestral levels
- consider alternative therapies if you can afford to and you're open to the idea e.g. many people find acupunture, homeopathy, yoga, massage, exercise etc work for them to relax and heal * of course not all of these are recognised by the NHS or science yet many people find they work for them - so if you believe it does and it works for you without side effects or re-mortaging your home (!) then maybe it's worth a try?
For the benefit of newbies and super sensitives it is worth looking on the EFSA site and put gluten in the search box, this show's to my cost where gluten maybe lurking. There are also exempted ingredients that may contain more than 20ppm og gluten and not have to be on the label these can be found on commission directive 2007/68/EC Annex IIIa well worth knowing as it may explain why you are ill.
That is correct, in the site search box write gluten, at least 12 documents should be available that relate to low doses of gluten. From what I have seen on several sites the most complaints I see are related to these documents which is why I feel that the origin of the gluten should be on the allergen labels.
Does anyone test food for gluten on request in UK? 
New on the scene, and learning gluten-free does not mean free of gluten. How do you navigate this? 
Does anyone follow a gluten free diet out of choice for healthy lifestyle benefits?
Not sure what to eat after reaction
If you are on a gluten free diet and are still experiencing difficulties or may not feel as well as expected -
