2009 Gig Conference Planning

[lovegrov]

"I think you need to reread what I wrote as you misquoted me while talking about CUK.

Here is what I wrote:

QUOTE

Don't get me wrong, she's not alone ... the UK equivalent is just as bad ... and a little research shows the directors of the "non profit" organisation raking in the $$$$ and passing questionable resto's that pay."

Just to point out. The double ellipsis that you put in there made it appear to me that the UK was a separate case from the rest. So I assumed the rest was referring to GIG or Cynthia.

richard

[gfp]

"I think you need to reread what I wrote as you misquoted me while talking about CUK.

Here is what I wrote:

QUOTE

Don't get me wrong, she's not alone ... the UK equivalent is just as bad ... and a little research shows the directors of the "non profit" organisation raking in the $$$$ and passing questionable resto's that pay."

Just to point out. The double ellipsis that you put in there made it appear to me that the UK was a separate case from the rest. So I assumed the rest was referring to GIG or Cynthia.

richard

No prob.... the point is these are valid questions to ask of someone who has become a self-appointed spokesperson ...

As you said earlier, everyone should make up there own mind ... based on the evidence. They don't need (or perhaps spme do) someone defining 'acceptable risks' on their behalf.

Cynthia .. Welcome to this community...

I'm off to work but ...

Maybe you don

[home-based-mom]

You sound like a very educated, scientific person. Maybe you don

[lovegrov]

"However: Again, this is almost mute as many distilled alcohols then add caramel color or other possible gluten containing products. "

I assume you mean moot. As for adding caramel color (which I have NEVER found to contain gluten) and other products, I've yet to find an alcohol in the U.S. where they added something with gluten. Have you?

richard

[lovegrov]

BTW, I think it's misleading to say Cynthia is a "self-appointed" spokesperson. She was hired to do a job and she has become something of a spokesperson because of her knowledge and the respect most of us have for her.

richard

[Jestgar]

Cynthia, I'm so sorry that you've found it necessary to come here to defend yourself, but I am so glad that you've taken your time to educate us all a bit. Thank you.

[gfp]

"However: Again, this is almost mute as many distilled alcohols then add caramel color or other possible gluten containing products. "

I assume you mean moot. As for adding caramel color (which I have NEVER found to contain gluten) and other products, I've yet to find an alcohol in the U.S. where they added something with gluten. Have you?

richard

Richard, I really have no wish to argue over either spelling nor moot points.

There are plenty of posts on this board where people have written to manufacturers regarding different distilled beverages and received either a negative or "we don't know".

The provenance of these beverages is again moot, the US is not known for producing any distilled beverage with the exception of rye whisky. The ingredients of Scotch Whisky (by law) are allowed to contain Caramel.

Open Original Shared Link

Nov 10 2007, 05:34 PM

I am including all the correspondance that I have from the Famous Grouse Scotch whiskey. In a nutshell, Scotch is distilled and then carmel coloring is added to the finished product to provide a nice golden color. That caramel color was always made from corn but is now in the process of being made from wheat. The UK says the residual gluten is below their standard so there will be no labeling. Their standard, however is 200 ppm compared to ours of 20 ppm. The only scotch that never adds coloring that I know of is Macallen, which I am switching too.

Following is the conversation:

Dear Terri,

Spirit caramel E150a is made from a two stage process, first a starch source is converted to a sugar solution which is then converted to caramel colour. The UK supplier of E150a has been using sugar solutions made from maize for many years. However, they are in the process of changing their process so that sugar solutions made from wheat can be converted to caramel.

The possibility of gluten being transferred through the E150a process to the final product has been investigated and in a recent statement the European Food Standards Agency found that there was no evidence of this and products using E150a would be exempt from the allergen labelling requirements.

Regards

Ruth Higgins

Quality Systems Coordinator

The Edrington Group

Exempt from labeling does not mean zero gluten ....

Which brings us out of this moot point and back to the point Cynthia raised....

Is gluten free - gluten free or low gluten (to paraphrase).

or as she put it ..

Maybe you don

[Ckupper/ GIG]

GPG

Here is what is so great about this discussion: Maybe we are talking about something more than celiac disease --maybe it is a different form of gluten sensitivity, or a unyet discovered form of celiac disease. I have always felt that gluten intolerance could have a similar model as glucose intolerance (pre-diabetes, syndrome X, hypoglycemia, type 1, type 2, gestation, etc).

It has been my soap box and my mission to get someone to address why some people do not meet the diagnosis criteria for celiac disease, yet obviously have some reaction to gluten. Recently Fasano validated what I have been speaking on for 3 years - there are non-celiac gluten intolerances/sensitivities...just what they are and how they relate or don

[gfp]

GPG

Here is what is so great about this discussion: Maybe we are talking about something more than celiac disease --maybe it is a different form of gluten sensitivity, or a unyet discovered form of celiac disease. I have always felt that gluten intolerance could have a similar model as glucose intolerance (pre-diabetes, syndrome X, hypoglycemia, type 1, type 2, gestation, etc).

I'm happy we actually agree on so much.

I am also very glad we can discuss....

What I really hate is chopping up people's posts ... but I fear I may do a little of that in order to answer

We are really going back to a definition of Celiac disease here or at least the definitions through the 20C and our part of the 21C. If we skip over the history quite quickly we come from Roman Times through to the early 20C quite quickly... and with little progress.

(I can give refs here but I expect you know them and we would agree)

The 20C has been a time of "childhood disease" to very rare illness (whereby med students were told they were unlikely to ever see a case) through to the ELSAP study which included C(o)eliac as a "rare disease" rather than expecting the results to show the now familiar 1:200 or greater incidence.

The invention of the flexible endoscope led this in into the realms of GI's... and this is almost the closing chapter of the "archaic period" of celiac disease.

A little diversion and we can discuss Warren and Mitchel but we will discuss h. pylori later (perhaps on the dog thread?)

So onto diagnosis criteria:

It has been my soap box and my mission to get someone to address why some people do not meet the diagnosis criteria for celiac disease, yet obviously have some reaction to gluten. Recently Fasano validated what I have been speaking on for 3 years - there are non-celiac gluten intolerances/sensitivities...just what they are and how they relate or don

[aklap]

We need a study where people are gluten free and actually gluten free to the point where all food they eat is 100% gluten-free.

This means a enclosed center, no gluten in. All items that could be contaminated tested.

How can this happen in light of today's testing limitations? Short of growing, harvesting and processing their own food in a closed non-gluten environment.

To my knowledge testing can only go down to 3ppm gluten/1.5ppm gliadin. Unless testing goes down to 0 ppm, we'll never know if a food is 100% gluten free.

[home-based-mom]

How can this happen in light of today's testing limitations? Short of growing, harvesting and processing their own food in a closed non-gluten environment.

To my knowledge testing can only go down to 3ppm gluten/1.5ppm gliadin. Unless testing goes down to 0 ppm, we'll never know if a food is 100% gluten free.

It probably can't happen. The solution is to not label anything "gluten free." The solution is to list *ALL* ingredients (not just those under a particular threshold) and let the buyer know if the food is processed in a shared facility or on shared equipment. Let people read the labels and make their own decisions, but don't flat-out lie to them and call something gluten free when it isn't. Such deceit makes all labels untrustworthy because the buyer has no way of knowing who is telling the truth and who is lying for financial gain.

[lovegrov]

"What we need is a proper control where people really are not eating gluten and antibodies measured.

This means zero gluten."

Unless something has changed recently, I didn't think it was possible to measure for sero gluten. Am I behind on this?

richard

[jerseyangel]

The solution is to list *ALL* ingredients (not just those under a particular threshold) and let the buyer know if the food is processed in a shared facility or on shared equipment. Let people read the labels and make their own decisions, but don't flat-out lie to them and call something gluten free when it isn't.

Yes! That would make life so much easier!

[lovegrov]

"Richard, I really have no wish to argue over either spelling nor moot points."

GFP, you and I will always without question disagree on some things, but when you accused Cynthia of being a "sell out," being paid by McDonalds to lie, setting back safe eating for celiacs by years, and calling her a "self-appointed" spokesperson (which she very obviously is not), that was just beyond the ken. You didn't even bother to check her credentials yourself before blasting away. What does RD mean? Does she have celiac? Gosh, don't strain yourself with a search. The paid-by-McDonalds-to-lie comment would seem to me to border on libel unless you can prove its true (yes, I know that's not really the standard for libel, that's why I said "border on"). It nearly left me mute.

Cynthia NEVER comes on forums like this to defend herself, but your comments and accusations were so over the top that she did. I was astounded by how gracious she was despite your rudeness.

You obviously have a good deal of knowledge and you unquestionably know a lot more science than I do, but you still don't seem to realize that you undermine your own credibility when you post the way you did.

And there's nothing moot about that point.

richard

[gfp]

It probably can't happen. The solution is to not label anything "gluten free." The solution is to list *ALL* ingredients (not just those under a particular threshold) and let the buyer know if the food is processed in a shared facility or on shared equipment. Let people read the labels and make their own decisions, but don't flat-out lie to them and call something gluten free when it isn't. Such deceit makes all labels untrustworthy because the buyer has no way of knowing who is telling the truth and who is lying for financial gain.

This is the case.

For the study the group would eat naturally gluten-free foods.

Its pretty easy to get carrots, vegetables etc. especially ones that are wasjed and peeled before eating.

When foods are possibly contaminated (say in transit) then they are tested.

Unless something has changed recently, I didn't think it was possible to measure for sero gluten. Am I behind on this?

Testing for zero is not possible but testing to a few parts per billion is not.

I doubt your beyond this but you would need to read on testing methodology.

Firstly testing for zero is a different type of test... there are quantitative and qualitative tests. RAST and ELISA aresomewhere between. (semi quantitative).

Testing by GC-MS is expensive if you keep changing what you are analyzing for, you need to change the GC column and recalibrate the machine. However testing for the same thing again and again you don't.

The columns are designed to test for different things and range from very broad to specific. To test for specific the columns become more specialised (=more expensive) and more accurate. The expense however is only really important when you keep changing columns.

To test for the presence of a substance is again different.

If we want to determine the ppm of gluten in a ready meal the methods used are to take the meal and blend it, a small sample is then taken to the next stage (extraction)... and then a small amount of this is run.

If we want to determine if any gluten is in the meal we don't do this. We take lots of samples and blend those/extract on those etc.

If we wanted to for instance test if carrots had been contaminated in transit we would peel the carrots and analyse the peel, not the whole carrot.

By changing the analytical methodology to looking for the presence, not overall concentration we get far more accurate and detect down to lower ppm.

Not all testing needs to be so complex....

Lets take an example of oats possibly contaminated with wheat. This illustrates just how the methodology can be used to cheat.

If we want to just tell if we have wheat its pretty simple. We take a container full and we spread it out on a table part by part. Then we go through and look for wheat using nothing more than our eyes. When we have collected enough of what we think is wheat we take it aside and compare it under a microscope or hand lens.

If however we want to prove our oats are <some concentration.

1) we take the container and find if the wheat or oats tend to be on top. During transportation the differentshred the documentation on the above shape will mean one will settle and one will tend to go on top.

2) We shred any notes on the above.

3) We design ametthodology that says " We take 200g of the mixed product from the (top/bottom) of the container.

4) we do whatever test is least reliable for detecting low levels.

Its really that simple....

So back to the study ???

Items such as buckwheat and rice flour would be tested before entering the facility.

The facility would have its own gluten-free bakery/brewery... for those who can't live without gluten-free substitutes.

Its really not that difficult, it just needs to be set up in the correct way.

We might finally be able to answer those questions that different studies come up with vague and contradictory answers, such as long term effects and effects of <200ppm or 20ppm etc.

[aklap]

Never mind

[aklap]

GFP, If you were quoting me, this is what I said...

To my knowledge testing can only go down to 3ppm gluten/1.5ppm gliadin. Unless testing goes down to 0 ppm, we'll never know if a food is 100% gluten free.

not this...

Unless something has changed recently, I didn't think it was possible to measure for sero gluten. Am I behind on this?

If it's a simple matter of testing for "the presence of", why are the food tests and standards geared towards ppm? It would solve a world of problems if the all the countries switched to GFP's method of testing. We could then stop endlessly debating about it.

[gfp]

GFP, If you were quoting me, this is what I said...

not this...

If it's a simple matter of testing for "the presence of", why are the food tests and standards geared towards ppm? It would solve a world of problems if the all the countries switched to GFP's method of testing. We could then stop endlessly debating about it.

We need both methods..... but they are applicible differently.

This is the same for almost all analysis, its the false negative/false positive thing or accurately determine a ppm or presence of.

Firstly screening:

Screening is a 'quick and dirty' but mostly cheap method. This is something used to control production lines etc.

In general the more sensitive the highrer the chance of false positives.

Screening should be combined with real quanitative analysis and calibrated. This is the expensive part.

If a facility existed with a dedicated gluten tuned GC-MS then this could be done more cheaply than when a lab has to calibrate and tune but the demand isn't there...

Why isn't the demand there? because its not required... the food industry wrote these standards for their won benefit. GC-MS will never be as cheap as screening... they wrote the 200ppm limit because they could use cheap testing.

Secondly the full quantitative results are very hard to argue against. if the method is folowed they are extremely accurate and reproducible. If a court case ever happened they would be very hard to wriggle out of.

Screening tests are by definition inaccurate and not reproducible...

If we had a $ for every home pregnancy test which was wrong we would both be very rich

However this doesn't mean home pregnancy kits are bad, they are just not diagnotic or always correct.

Having worked in anallitical labs and dealt with clients, it is not unusual (actual its normal) to design the test to weight it strongly to what the client wants to prove.

If you took a landfill site and were approached by a residents association the testing suggested would be completely different to being approached by the company who developed the land!

Like I say, its not just normal, it's pretty much the way it is.

Regulatory bodies tend towards having a strong industry influence. In most cases they will chose the tests suggested by industry, not always in the public interest.

[cruelshoes]

Overheard on Open Original Shared Link today:

Beaver - Jeepers, Wally, do you think that thread will ever get back on topic?

Wally - Don't be such a blockhead, Beav. The next post in the thread will contain one topic for the 2009 GIG conference.

Don't let Wally down!

[Jestgar]

To test, or not to test, that is the question.

The benefits and downsides of an official diagnosis. How to decide what's right for you.

[gfp]

Overheard on Open Original Shared Link today:

Beaver - Jeepers, Wally, do you think that thread will ever get back on topic?

Wally - Don't be such a blockhead, Beav. The next post in the thread will contain one topic for the 2009 GIG conference.

Don't let Wally down!

Well... so far we have stimulated topics on :

Should gluten free be gluten free ?

Should celiacs avoid all gluten or just gluten-lite?

Should a QA process be legally enforced?

Should the food industry set the limits? or direct the testing ?

Plus a lot of conversation on:

Non Celiac Gluten Sensitivty - Fact or Fiction?

I'd like to see a round table of the Celiac experts hash this out. You'd have the traditionalist [villi damage or bust] on one side and the non-traditionalists [gluten affects far more than just the gut] on the other. Some of the more traditional doctors are beginning to change their view on the matter a bit. It also would be cool to get Dr. Gluten aka Dr. Rodney Ford and/or Dr. Scot Lewey. Both of them are gastros that acknowledge NCGS. Dr. Ford is from New Zeland, Dr. Lewey is in CO.

Most importantly: We have raised a question. Should GIG have a opinion on these? Should GIG opt for what is safe for its members and other celiacs or should GIG opt for what is achievable but has as yet unknown and unquantified risks?

[Ab-Normal]

Questions I've had (don't know if they'd be covered under other topics):

The gluten-free kitchen: What has to be changed? How do you prevent cross-contamination?

Talking about gluten: How to convince your first degree relatives to just get the bleepin' blood test.

[lovegrov]

So GFP, we're still breathlessly waiting on your evidence that Cynthia is a sell out or was paid by McDonalds.

richard

[lovegrov]

"I doubt your beyond this but you would need to read on testing methodology. "

Gfp, sorry to be dense, but can you explain what this means?

richard

[gfp]

"I doubt your beyond this but you would need to read on testing methodology. "

Gfp, sorry to be dense, but can you explain what this means?

richard

I already did. it seems everyone else grasped it, perhaps one of them can explain it.