Which are you?

[pretender]

What comes first a, your being known as coeliac or b, your on the gluten free diet?

Me I am a coeliac first.

[NorthLeedsJohnny]

Coeliac! Not just on a "faddy" diet.

[Hidden]

never say gluten free it is i am coeliac. To me if they say i am gluten free they are just trying the celeb diets.

[SilverDreamMachine]

Depends if I think the listener would understand coeliac. If not then GF.

[Hidden]

Coeliac, it makes restaurants take my dietary requirements more seriously! If I said I was on a gluten free diet, they don't seem to take as much care with my order as they think it's a weight loss diet.

[artyvox68]

I am trying to live a pain free gut diet, I don't care what "they" say!

[exDancer]

Whats a free gut diet?

If eating out I usually say, I'm coeliac so can you recommend anything without gluten? I agree, if you say the words gluten free they think you're faddy. Pity!

[Karen77]

I chose to follow a gluten free diet (actually "grain free" - I don't eat non-gluten grains either) and am not diagnosed as coeliac. I am not following a "fad" diet, but a nutrient dense, healing diet to heal my gut and lessen symptoms of rheumatoid arthritis. I feel so much better off gluten, that I wouldn't dare subject myself to it in order to test for coeliac. My father has CD and I understand that it can both be genetic and connected to other autoimmune diseases, and that's good enough for me. Also research seems to support that no one should be eating gluten/grains, even healthy people (Wheat Belly, Grain Brain, The Paleo Diet Solution, The Perfect Health Diet, The Paleo Approach, etc).

[Hidden]

In the London marathon there was someone dressed as a chicken and someone else dressed as an egg and the commentator asked who came first!

With a diagnosed coeliac first came the diagnosis then came the gluten free diet so I think that what matters is that we avoid gluten at all times and that we make this loud and clear when we have to and as succinctly as possible. My friends all know that I am a coeliac and that I have to have a gluten free diet.

I personally do not like eating in restaurants as I do not like gluten free food prepared and cooked with wheaties food so I stick to cafes that have gluten free options and usually these are self service so there is no need to explain myself to anyone.

I also think that 'we' have to be sensitive to those who are self diagnosed or have NCGS as they need to avoid gluten just like we do, so a gluten free diet is not a faddy diet for them and they should not be made to feel that they have to explain themselves, especially on here as 'we' all need a gluten free diet for our own well being/reason and that is 'our' common ground.

I also like artyvox's answer that he is trying to live a 'pain free gut diet' and good for him.

[pretender in reply to Hidden]

Coeliac diagnosis before the gluten free diet, Jerry! as you are fully aware the gluten free diet is only for those who can tolerate it and the EU ruling being that it does not take into account the individuals susceptibility to gluten. I as a twice diagnosed Coeliac do not follow the gluten free diet but do use certain foods totally exempt from a gluten source on prescription. I have found on my travels UK and abroad that Coeliac is better understood than the gluten free diet, Eating out I am Wheat Free & Gluten Free which covers the Coeliac that I have and do not find any need to explain anything to anybody. Still waiting to find more than the few Coeliacs that I have met in my life.

[DartmoorGuerrilla in reply to pretender]

With all due respect, the way you phrase this is potentially very misleading to anyone new on here. We need to distinguish between "gluten free" diet which we medically require, and so-called gluten free processed foods that are legally, but not really, gluten free.

All of us, coeliac or NCGI, can tolerate the gluten free diet! But not all of us can tolerate the cr@p that is, disgracefully, sold under that name whilst still containing gluten.

We need better legislation, but meanwhile we need better terminology. Anyone clever (like Jerry!) have any suggestions...?

[pretender in reply to DartmoorGuerrilla]

With all due respect Dartmoor Guerrilla the misleading part is the description namely "Gluten Free" which actually may contain up to 20ppm of gluten per kilo of finished product so is not free of gluten, please do not hide behind the "Newbie" label, we are all advised once diagnosed what to avoid. The medical requirement is to avoid all wheat, rye, barley and to some oats (ask jerry). The gluten free diet is there for those who can tolerate it and is not the treatment. As for legality of gluten in foods the rule makers are only interested in the profits made from legally allowing gluten in gluten free foods not that of the patient So the crap you are complaining of is legally permitted as in prescription foods. I spent time chatting to clever coeliac's who misled me to believe they were supersensitive and thought we should follow the lead of other countries only to find they were quite comfortable with 20ppm of gluten and others who claim coeliac status and are totally false but promote the gluten free diet. To me I am first a Coeliac and I must avoid anything made from wheat, rye, barley or oats or their derivatives and Gluten Free should mean exactly that. This question was intended for Coeliac's alone as per OP.

Please see Commission Directive 2007/68/EC Annex IIIa & European Food Safety Authority placing gluten in the search box. Should you require a copy of the correspondence of Ariane Vander-Strappen who made the rule on behalf of the EU please ask and I will supply.

[DartmoorGuerrilla in reply to pretender]

I know all that. You've COMPLETELY missed my point.

You keep saying things, in this post and others, like "the gluten free diet is only for those who can tolerate it". "The gluten free diet is there for those who can tolerate it and is not the treatment".

Both of those examples are objectively wrong!

What you mean is some of us cannot tolerate certain mass-produced prescription and retail products legally (but misleadingly) labelled as gluten free.

Saying you cannot tolerate a gluten free diet, without qualifying or defining it, is both inaccurate and confusing. Not to mention annoying.

[pretender in reply to DartmoorGuerrilla]

The point is very simple these points are correct the gluten free diet is there for those who can tolerate it, the treatment is avoidance. What I mean is that there are Coeliacs who cannot tolerate gluten what so ever and it doesn't matter where it is legally hidden. I also state that my diet excludes GLUTEN from any source and go by ingredients listed on products. Should you now look at the ingredients listed on GF foods you will have noticed the change in bread type products that no longer have derivatives (you cannot make bread without gluten) but now contain "Hydroxypropylcellulose" as the gluten alternative (So yes now totally free from gluten) but in my case this ingredient produces leachable formaldehyde and for me its an allergy so again avoidance this is accurate and defines just another issue for me.

What really annoys me is the support for this diet and yet the complaints of continued ill health without checking out a possible cause as being the diet, 20ppm. I have personally been diagnosed in 1955, taken off the wheat free diet in 1962 to be re-diagnosed in 2007 then having my issues, having a further confirmation in 2011, where it was stated "most can tolerate the diet I have problems". Confusing yes! to me, or was it just negligence for this life long condition.

To add to my avoidance diet of wheat, rye, barley, oats it is also food/beverages that produce formaldehyde of which there are many and now what will produce vitamin K to upset my Warfarin.

Please do not tell me what I mean I am fed up being ill by taking advice from Coeliac's who agree with this diet.

[DartmoorGuerrilla in reply to pretender]

You've clearly not bothered to read and understand my point.

[pretender in reply to DartmoorGuerrilla]

The original post ="What comes first a, your being known as coeliac or b, your on the gluten free diet?

Me I am a coeliac first. "

What is so difficult that you do not understand the question?

To me Coeliac is better understood than the GF diet yet the GF diet is promoted. And No Jerry not a dig, a question that is so basic yet gets twisted as usual

[Hidden in reply to DartmoorGuerrilla]

I think that Pretender is deliberately being contentious here and I wondered if his post was to have a dig at a gluten free diet.

Not all coeliac can eat oats or want to so a wheat free gluten free diet is just as flawed for us because a commercial gluten free diet can contain up to 20ppm and wheat derivatives are not labelled as such so the commercial free from manufacturers do not necessarily know the source of E no's like citric acid, caramel or artificial sugars.

As Dartmoor guerrilla rightly says a gluten free diet is the only cure for anyone with CD so it's our interpretation of gluten free that counts and in some countries they have no wheat, oats, barley or rye and all food labelled as gluten free has to be within codex or lower. Sadly the majority of 'gluten free' grains like corn and rice can be contaminated with gluten and this is what separates the gluten free specialist millers with independents. I bought some Pearl rice flour and kept getting head aches so I contacted them and they replied telling me that they were not packaged separately so they could not guarantee that they were gluten free. So codex is a safety limit to protect coeliac who want to be able to buy free from foods.

As for the comment by DG that he is being annoying, as well as having been diagnosed twice some of us know how many times he has been a member of GFG so lets hope that history doesn't repeat it self.

And thanks for the comment that I'm intelligent DG you're pretty astute your self.

[pretender in reply to Hidden]

There is no cure yet for Coeliac Disease as you well know jerry, the diet is just the opinion of the scientific panel of the EFSA but excluded the coeliacs who could not tolerate the stuff in the beginning by the manufacturer. Sorry if I do not conform to your theories or that of others we each have our own views and treat our condition accordingly.

[freelancer]

In restaurants I say I have stomach problems and can't eat gluten, which keeps it non-technical but firmly in the medical-problem-rather-than-trendiness sphere. Mind you, I'm not diagnosed coeliac and would probably say if I was. I think it's too dangerous to just say "gluten free" in a context where anyone's likely to give you food...

[pretender]

Promoting Coeliac Disease as an illness with dietary needs or promoting the Gluten Free diet is the bottom line which do not work together in the interest of Coeliac's (not taking others into account).

[DartmoorGuerrilla in reply to pretender]

I completely agree with your underlying point on this. There's big money in the processed rubbish, especially the prescription foods. A certain national patient group in the UK is of course funded by the purveyors of the aforementioned crap so doesn't rock the boat as they should.

[Hidden in reply to DartmoorGuerrilla]

This is 100% right and I would like to see gluten free mean none of the forbidden grains and undetectable gluten as gluten free.

In an ideal world I'd like to see gluten free mean zero gluten but after starting a group called Zero Gluten to lobby the US congress on legislation on gluten free as they had asked for input from coeliac from around the world and some American coeliac were terrified of codex at 200ppm which's what we had in the EU.

But we were ridiculed by some coeliac in the UK as cranks and Coeliac UK said that there was no such thing as zero gluten and as I funded the site did not need the aggravation I closed it down and Congress legislated 20ppm as gf.

As for rocking the boat, me i'd capsize it LOL.

[pretender in reply to Hidden]

Well said Jerry, there is such a thing as Gluten Free or Free from Gluten it means it has nothing from a gluten source as an ingredient. But back to basics for those making such an idiotic statement as "Gluten Free may contain up to 20ppm of gluten per kilo of finished product" How can they justify their statement? of being gluten free. While there is profit to be had we will always be the looser and Coeliac UK does not represent me as a Diagnosed Coeliac and get no profit from what I buy. I do know a few cranky coeliac's who eat their daughters normal pizza and have no effects also the one who learned from their partner and is what I consider as "Queen of the Gluten Free's" (cannot support any diagnosis) she also has a princes who only reacts to barley.

The boat needs rocking and ALL Coeliac's should get the correct representation.

PS I was diagnosed before CUK was even thought of and went into remission by following a diet. Medical fact.

[Hidden in reply to Hidden]

If it is undetectable, that is going to be damned difficult to manage - but I see what you're getting at.

The complication for me is about 'safe' levels. Obviously some people believe there are safe levels and others don't. There are safe levels for lots of things that can in large doses be dangerous or lethal. With gluten it appears to be that the levels are so different for different people that I'm not sure we can legislate for it.

I'm still a relative newbie - diagnosed a year ago. I seem to be lucky - or naive - in that removing the obvious gluten has got rid of most of my major problems. Maybe I do not get the trigger at < 20 ppm but that doesn't mean that others don't.

For me, the big issue is that lack of transparency - and manufacturers being allowed to hide the derivation of ingredients.

Interestingly enough, I notice that Coeliac UK says that vinegar is okay (because of the distillation, but Sarson's have a note on them (white as well as malt vinegar) saying 'contains gluten'. Figure that one out - no wonder I'm confused!

[pretender in reply to Hidden]

The basic issue just like a peanut allergy the manufacturer should know where the ingredients come from as an original source and should be listed as such, not by some fancy name because it is refined. As for hidden gluten/fragments/proteins yes there are those that react to them but they are legally there, distilled grain alcohols have this problem but considered safe for profit. It is not about the patient its about profits, CoeliacUK are not a charity they are an employer and require funds to pay wages. Once diagnosed you find your own sensitivity level and must make your own judgement on what your diet consists of, I understand from Jerry that CoeliacUK have a disclaimer.

[Hidden in reply to pretender]

"It is not about the patient its about profits" - I tend to agree with you there - but most things are abut the profits.

My carp with Coeliac UK is that they don't seem to go out of their way to enable people to speak for themselves. They seem to harp on about prescription foods whereas what we need is all manufacturers to be more gluten aware.

[pretender in reply to Hidden]

The whole Gluten Free industry needs looking at, if you look at the European Food Safety Authority site and put gluten in the search box you will find some of the places gluten is hidden it will also tell you the company making the derivatives etc you will also note that fragments of gluten/peptides remain in the tested product declared as gluten free (this would not be accepted if it was a nut allergy and had fragments of nuts) ie below 20ppm but the tests never state that all types of coeliac are tested. Coeliac organisations in the EU all work together, CUK follow instructions from the FSA who are instructed by the EFSA. Prescription foods produce higher profits so is marketed more and any opinion against the GF diet is frowned upon and the worst offenders are coeliacs them selves. I have contacted CUK on many occasions and if you cannot tolerate their diet you are an outcast which I find is discrimination to those who are susceptible to legal amounts of gluten, so how can Coeliac UK claim to represent Coeliac's? or call the themselves Coeliac UK more like Gluten Free 20ppm UK.

[DartmoorGuerrilla]

To answer the OP, my description depends on the audience.

In my office, high % scientists/medics, "coeliac". In restaurants, "coeliac", then assess the facial expression before deciding on follow up. To elderly relatives cooking for me, "you know I can't eat so much as a pinch of flour".

I might say "zero gluten" but never "diet". Sounds too Gwyneth

[pretender in reply to DartmoorGuerrilla]

Thank you DG and I do agree with you on "

2 hours ago DartmoorGuerrilla

"I completely agree with your underlying point on this. There's big money in the processed rubbish, especially the prescription foods. A certain national patient group in the UK is of course funded by the purveyors of the aforementioned crap so doesn't rock the boat as they should." If its the one I am led to believe they do not represent Coeliac's as a whole just the GF industry.

There are Coeliac's who have tried to obtain "zero gluten" in the past without success, also those who go with the flow of the group they are in, also people who learn about the condition from others and revel in their misfortune. I keep an open mind and cater for my needs as I see fit contrary to others opinions which led to 45 years of normal living between diagnosis. It is recognised by the Australian Coeliac Society that Coeliac's can go into remission.

[Jessiepup]

As non coeliac gluten sensitive my Gastroenterologist has told me to live a Coeliac lifestyle , I may not have the Coeliac diagnosis but it still makes me I'll if I don't stick to it.

[Aitch]

I am a coeliac and I have to eat a gluten free diet. regardless, people usually think you are eating a faddy diet anyway. which is frustrating.