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    Do you have questions about celiac disease or the gluten-free diet?

Mr GF Grumpy

(uk) Bbc Website & Discovery Foods

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Dear All

I invite feedback (good or bad) on the following two issues I raised.

Please forgive the lengthy character of this post, I intend merely to

give an accurate account of correspondences. The two issues relate to:

i) the contents of the uk bbc website (main uk broadcaster, and one of the most

trusted information sources);

ii) an email to Discovery Foods today (http://www.discoveryfoods.co.uk).

The full details of (i) are appended. Getting straight to the chase, I made a formal

complaint to the bbc on 12 March 2006 regarding their webpage

http://www.bbc.co.uk/food/recipes/mostof_coeliac3.shtml

that includes the statement "there is not gluten present in the end product" in

providing information to coeliacs on whisky. As I understand things, this is factually

incorrect and not, for example, covered by the uk legal status of usage of the

terminology "gluten free". You may wish to visit this website to confirm that the result

of this complaint is for the bbc to stand by (what I believe as) publishing incorrect

information. The date of this posting is 30 April 2006.

Secondly, I was looking forward to a "gluten-free" Mexican lunch today :-)

courtesy of Discovery Foods - big labelling on the outside to this effect, but

I should have read the ingredients more carefully! Malt vinegar is listed on the

ingredients that now duly reside in the waste. Instead of lunch, I sent the following

email to Discovery Foods (the CC Forum is this postings).

======== EMAIL TO DISCOVERY FOODS ============

CC Self, Coeliac Forum thread

Dear Discovery Foods

I recently purchased your "Mexican Recipe Kit" that is very clearly labelled as

gluten free. Yet, a closer inspection reveals that this,

*along with other products of yours*, contains malt vinegar!!

Can you comment on why you could not use a vinegar that is indeed

*truly* gluten-free, instead of one that presumeably has a sufficiently

low amount of gluten for you legally to label the product (in the UK, but

in a way that would be an illegal in North America, for example)

"gluten free"?

Many Thanks, My Name

=========================================

Personally, I invariably have strong reservations regarding putting

over-worked, under-paid & often-under-trained restaurant staff under

much pressure on the rare occasions I try to eat out (I tend to believe that

governance & law need to lead to education & labelling). But, when "pillars of

our information society" and those making bagfuls of money from coeliacs

appear to slip up, I am a bit more confrontational.

Yours,

Lunch-less but not dis-spirited,

Mr gluten-free Grumpy

---------------------------- APPENDAGE INFO -----------------------------------

BBC COMPLAINT of 12 March 2006

- Regarding website:

http://www.bbc.co.uk/food/recipes/mostof_coeliac3.shtml

- Reply requested.

- Text of complaint:

Dear Sir/Madam,

Briefly, the majority of us (including myself) consider the bbc close to definitive in terms of factual advice. However, you website reports the following (which I consider to be dangerously wrong advice) concerning a serious autoimmune disease:

"...including whisky, are all gluten-free."

"it is suitable for coeliacs to drink, as there is not gluten present in the end product."

I believe the following quotes from the Celiac Spruce Association to be authoritative and directly contradict your given advice:

"Distilled liquors known to be from wheat, barley or rye are categorized as “rendered gluten-free through processing.” If the product is from a gluten source, it does not conform to the diet of those who choose a zero tolerance level gluten-free diet."

(taken from:http://www.csaceliacs.org/gluten_choices.php),

And, also, specifically the term "gluten-free" should not be used, whereas there is a more specific labelling (which, if used by yourselves, would need explanation) .

The term ... "gluten-free in processing":

"This term was developed in Europe to differentiate between naturally gluten-free and items that test gluten-free after processing. Such products meet the CODEX definition for gluten-free (200 ppm. or .03% of protein). Codex wheat starch and distilled wheat- or rye-based alcohol are examples of "rendered gluten-free in processing." "

(source: http://www.csaceliacs.org/DefofGlutenFree.php).

In Highest Regard, My Real Name

-------------------------------------

Their reply omitted on Data Protection grounds.

My reply, of 22 Mar 2006, to their message is below.

-------------------------------------

Dear [to bbc Editor]

Thank you very much for your kind reply.

The quotes from your website in my original complaint were:

"...including whisky, are all gluten-free."

"it is suitable for coeliacs to drink, as there is not gluten present in

the end product"

This contains the words:

"there is not gluten present in the end product"

which is clearly factually INCORRECT, irrespective of the geographical

origin of the quote. The use of these words amplifies the ambiguous

terminology (you appear to accept the sense of this latter designation

of the terminology).

As a Coeliac myself, I can assure you that these communications with

yourselves are specifically well-intentioned and targetted both to

uphold the reputation of the BBC and to protect other Coeliacs that

live in a maze of directly-contradictory information concerning this

general subject are (for example, approximately 1/2 of the websites

concerned say don't drink whisky while the other 1/2 say that it is

fine).

Without going into too much detail, the damage from this disease arises

from an immune system response that can be triggered by trace amounts

- so very small amounts of gluten can trigger that which does damage,

and it is not as simple as, for example, "damage is proportional to

amount".

Within the sufferers (within approx. 1% of the UK population) there

are lives destroyed and related auto-immune diseases (eg type-I

diabetes) developed (believed to be) as a result.

* I would thus be very grateful if you would re-consider a minor wording

change to reflect that "not gluten present" actually means "a trace

amount of gluten present".

In Highest Regard, My Real Name

-------------------------------------

A further email from the bbc received (summarising my complaint

in, what I felt to be, an unsatisfactory way).

My reply to this message is below

-------------------------------------

Further Email of 24 Mar 2006

Dear [bbc information officer]

A more accurate representation of my concerns is that

the given information is not only misleading, but that

the statement "there is not gluten present in the end product"

is indisputably incorrect.

Best, My Real Name

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