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?

I think this is how it is in the UK. So something like fruit and veggies would not be labeled gluten-free, but something with wheat starch could be if it's less than 20ppm. I don't mind that fruits and veggies won't be labeled, but what about things like cheese or chicken? I don't usually think of them as gluten containing, but we all know that it's possible to have gluten in them. Will plain chicken breast be labeled? Do I need to read the label, see if there's gluten in it, then check for a gluten-free logo? Am I still going to have to do research on the possibility of CC - i.e. if plain chicken doesn't have any other ingredients but is manufactured right next to wheat flour? (Silly example, but I've got chicken on the brain!)

Nope you are spot on ...

Sainsburys plain cooked chicken breasts contain gluten ??? (really)

And your spot on .... its not the apples and oranges nor pasta and bread but things that regularly do have gluten ... cooked ham for instance. Its literally thousands of products from stick cubes to grated cheese and rice krispies.

In each case the Gluten Free label is pointless, the CUK directory worse than pointless and the small print all that helps but this itself is written in oft obscure language ...

To be honest, regardless of celiac disease isn't it about time boiled ham was cooked ham? Roast chicken was roast chicken? and roast chicken with herbs and garlic ... exactly that!

I really fail to see how hard it is that foods are labelled as their title. If this is "Roast Chicken with preservatives, gluten binder and injected water" then that should be the label...

Why do we have the "no added preservatives" .... surely this should be the case and all other foods should be labelled as "ham with preservatives" ???

Open Original Shared Link

By passing on a wide-ranging set of immune system genes, couples increase their chances of having a healthy child that is not vulnerable to infection.

Partners with different genes are also less likely to experience fertility problems or miscarriages.

Women are naturally attracted to men with immune system genes different from their own because of their smell, experts believe.

Could this include double celaic genes ???

Both figs and prunes are natually infected with candida perhaps this might be a clue?

I also had trouble with my computer.....but only while on this forum. It happened three times while trying to access the forum at different times over about 2 days.Scared the wits out of me.....thought it was crashing and had my husband back up the system just in case. We have an ATT aircard. Since the problem was experienced only when I attempted to access this forum, I think the problem was on their server end.

Pretty unlikely.

It more likely the continued use caused it to overheat.

Sodium ferrocyanide: Na4Fe(CN)6 hence gluten free.

In other words its a sodium/iron cyanide salt.

The MDL states:

Section 3: Hazards Identification

Potential Acute Health Effects:

Extremely hazardous in case of ingestion. Hazardous in case of skin contact (irritant), of eye contact (irritant), of

inhalation.

Potential Chronic Health Effects:

Extremely hazardous in case of ingestion.

Hazardous in case of skin contact (irritant), of eye contact (irritant), of inhalation.

CARCINOGENIC EFFECTS: Not available.

MUTAGENIC EFFECTS: Not available.

TERATOGENIC EFFECTS: Not available.

DEVELOPMENTAL TOXICITY: Not available.

The substance is toxic to blood, lungs, mucous membranes.

Repeated or prolonged exposure to the substance can produce target organs damage.

I do enjoy wine. And perhaps dilemma isn't the proper word. It's not like my social outings are now inhibited, but I really did love to try all the different kinds of beer. Beer and wine are two different things, though. Sometimes, wine just doesn't do. But a nice, cold beer would just hit the spot. And finding the few gluten frees are not so hard, but I miss being able to try different ones when we do go out.

This might not help specifically...

IMHO there is a world of difference to trying a bud-light once in a while and making a habit of it.

I don't disagree that the levels are low; I disagree that consuming low levels over a long time is OK.

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.

It might be overheating. Check the vents and clean the dust from them if necessary. That could help, or you could need a new fan.

This is my #1 guess!

We don't have A/C. In the summer I keep an ice cube tray on top of the computer tower and switch it out when the ice is melted. Very low tech but it works!

I would say using sealed bags is better

the best thing is scary but it's really quite simple on a desktop.

Make sure its all switched off....

Remove the case (this is the hardest part)

carefully use a domestic vacuum - don't touch anything with the tube, just use the tube to suck without touching.

use a small brush to dislodge any hard to get fluff....

pay attention to the fans these can be touched and scraped etc. (its just a fan)... and the one in the power supply (big squarish box)...

vacuum out any more fluff .....

put back the case and switch back on....

Hi Shay, It doesn't scare me, I've seen this coming for a long time------ I got scared about 8 years ago when I had my first symptoms. I'm over that now---- Just want to know what's wrong with me.

I think it's either MS or fibromyalgia.

As others have said:

However please read this....

Open Original Shared Link

Specifically there is considerable research that finds symptoms that are expressed on MRI related to celiac disease.

the good news... Read the work of Hadjivassiliou, these symptoms are usually reversible and almost always stop getting worse on a STRICT gluten-free diet.

you should read all this, one is a PDF showing white brain lesions from celiac disease.

You should make sure you print this and take it to your dr/neurologist. Preferably BEFORE the scan!

I don't think it has been finalized yet. I think everyone is just assuming that's what the FDA is going to do. Basically it will mean that products will be like Rice Dream milk - labeled "gluten free" but not really "gluten free."

Actually it's a little worse than this...

To sum up the several pages:

If a product is naturally gluten free it cannot be labelled gluten free unless:

It has a substance usually containing gluten but rendered "gluten free below 20ppm" added.

I fully realise this does not make sense ... please don't blame the messenger. Read the document and decide for yourself.

btw CODEX is a FAO/WHO standard who's adoption by any nation or state is completely optional.

However the gluten part's biggest contributers are the US and Canada represented by the wheat farmers and food producers.

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.

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

Gemini: Can you show me evidence that injecting gluten does no damage?

"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

I have been gluten free 8 yrs last month. This last January, I was glutened by an OTC medicine. I was sick for 3 months.

Why do you want to do a challenge? Are you questioning if gluten is really the problem?

I think you hit it on the head .... Why ????

There are numerous reasonbs not to .... including provoking a rection to something or developing a condistion that is not reversible. Although these are rare it seems like rolling the dice purely for the sake of it?

color="#8b0000"].....That you know of ..... is the thing. You are probably still doing damage without showing any symptoms.

Well - minus the size... I agree...

there is plenty of damage can be done without even having a intestinal reaction.

Dogs are IMHO more problematic than cats... since they are much messier eaters...

This is especially true for treats since they seem to love throwing them about, crunching etc.

Try as you might you'll never get a dog to eat politely.... and they drop crumbs etc. etc.

Sooner or later these end up on yourself and then there is a chance of transferring them to your mouth inadvertantly.

Also vacuuming will stir them up and get them in the air etc.

Dogs also tend to get stuff in thier "beard" .... or in their teeth, then they chew a rubber bone or ball and next thing your handling the bone/ball.

"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

Hello to my UK Friends

I returned from the UK after a month long trip all of it in England the southern parts Cotswold to Ipswich. The UK celiac society puts out a book every year listing the gluten free food brands that are safe and it updates it on their website. They also have an email address where your can ask them questions. I think they also have a phone number.

Their website will also lead you to local groups. They will give you any information on meetings or other activities and they sometimes have recommendations from people in the area about eating establishments.

I found them quite useful. There was a great tearoom in Morton in Marsh that served gluten-free food. I stayed mostly in places where I did my own cooking or just had the vegetables at restaurants or pubs.

I must say you folks are a lot further ahead in Celiac awareness than we are in the US. I ran into many people who were Celiacs or knew of one. Most restaurants were very aware of food issues.

Starsong

Actually the directory lists products from companies that PAY which the companies say are gluten-free.

CUK does no checking ... or verification however they have trademarked the gluten-free symbol so that companies can't use it without paying.

oops forgot to say.....

You need to check labels at ALL levels.... don't rely on one.. check all the small print.

Actually according to the CODEX Alimentarius real coffee CANNOT be labelled gluten free whereas this can if it is <20ppm gluten.

If you read it carefully a banana or coffee cannot be labelled gluten-free UNLESS they add a gluten source which has been rendered gluten-free meaning <20ppm.

Secondly the protein in barley is not actually gluten (s.s.) but horedin.

"...and a little research shows the directors of the "non profit" organisation raking in the $$$$ and passing questionable resto's that pay."

Are you saying Kupper is personally taking cash to declare unsafe restaurants

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

Here is what I wrote:

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.

So questions:

I think these are reason able questions for someone who is claiming to speak on behalf of others.

My background: I left a job 12 years ago making a decent wage as a diabetes educator in a large hospital.

Executive Director: Gluten Intolerance Group of North America

So who elected you? (Who are you speaking on behalf of?)

Back to McDonalds fries....

McDonalds themselves have vast resources, a whole McDonalds university and lots of money yet they have no declared the fries to be safe.... and the analysis itself although only semi quantitive (ELISA and RAST) found traces of gluten.

There is considerable research showing that trace amounts of gluten do cause damage in celiacs.

Muscle Nerve. 2006 Dec;34(6):762-6.

Journal of Neurology Neurosurgery and Psychiatry 2003;74:1221-1224

When I make comments and recommendations, they are based on the best science and research available at the time, and doing my homework well.

Best Science and research is Peer Reviewed articles in serious scientific journals.

However there is much, sometimes contradictory research. Those funded by the food industry would seem to indicate that a little gluten is OK. Those undertaken as medical studies tend to the inverse. However, I have not seen a single peer reviewed clinical study where a gluten-light diet (CODEX and CC) say's that no damage is seen through a significant study sample.

By commenting and saying McDonalds fries are safe you place all celiacs in difficult positions....

Firstly, regardless of the analysis of the oil the chance of cross contamination in the final product remains.

Regardless of other comments I thought we had moved away from the "just peel off the cheese" and "take out the croutons" mentality.

Making statements that McDonalds fries are safe completely misses the issue of cross-contamination, hence why McDonalds have not made this statement for themselves.

Unfortunately this statement brings us back to the cross contamination issue... which has not to my knowlege been addressed.

Neither Kupper nor anybody else is FORCING anybody to eat the fries. There are quite a few people, including a number here, who have listened and read and have decided not to eat the fries. That's the way it should be.

Actually not everyone reads THIS forum... many people's family, friends and employers might search for gluten free ...

The celiac is then pressured into "just have the fries, they're gluten free" ...

By accepting the very scant (and misleading) report from McDonalds on the analysis and publishing an acceptance that the fries are safe for celiacs McDonalds can now escape a proper study involving quantitive analysis of the fries and the oil and the final product. Now we will never know.... because GIG make a statement that the fries are safe. McDonalds don't need to do ANYTHING to back this up... and if anyone does take the initiate and have the fries sampled and analysed then McDonalds is in the clear... they never claimed they were gluten free.

The same can be said for outback etc.

Its all very well them saying things are gluten-free but experience of many members here has shown that in many cases the staff are not aware of cross contamination.

Back to my UK experience....

CUK have licensed many resto's, mainly chains (as they charge for this).

I am pressured by my boss to eat at these places yet in most it is clear the staff are not trained nor aware of cross contamination. They check a printed list... the food arrives with bread on the plate or a mystery dressing etc.

When you check deeper many of these establishments cook on the same grill... offer a beer ... or any of the common warning signs we see.

The same confusion occurs over distilled alcohol.

the statement that all distillted alcohol is gluten free is doubly misleading.

Firstly, gluten is not the problem, gliadin is ...(or more accurately an even smaller part of the peptide chain)

Testing for gluten tests for these chains (which are common to rye) but is expressed in total Nitrogen.

Talking about gluten being too large is misleading since it is only this petide chain which needs to be present in the distillate.

Secondly... predicting the exact composiotn of a distillate is nearly impossible but in the case of whisky or complex fermented products actually impossible.

Each fermentation is different and comprises hundreds of different products.

Water and alcohol themselves are an azeotrope

Many of the components from fermentation are themselves part of a complex eutectic so that the partial pressure of one component wrt another will affect the mutual partical pressures and final eutectic.

Prolamines are themselves soluble in alcohol thus changing the partical pressure wrt. ethanol:water but they are equally soluble in many of the other complex carbohydrates produced.

The only real way to be sure is via screening and then quantitive sampling of any nitrogen detected.

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

Just because one says "best regards" does not mean that you mean well in what you have said. I feel that this post has gotten slightly ridiculous and now instead of educating people or allowing people to share their experience, others are poking fun at those people who have attempted to drink light beer calling it a "research project" in the most sarcastic manner. It really does make people not want to post things on this site if they're going to be subject to ridicule and judgements.

Those are people being sarcastic to long term friends....

Try and look at it like that.... many of us have long histories here and we have known the person we are having a friendly saractic comment with for years....

Unfortunately people then get upset on their behalf...

Hey, gfp, Cynthia Kupper has done more good for people with celiac than you would do if you lived another 500 years.

richard

Its doubtful, there is a small bush in my garden has done more for celiac then Cynthia Kupper.

Just doing nothing at all is better than actively endorsing the idea that certain unsafe things are safe.

Just who is she .... what does Cynthia Kupper, RD, celiac disease mean (what is RD or celiac disease)

In what way is she qualified to make statements on behalf of all celiacs on the safety or otherwise of products?

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.

CUK actively fought against legislation that would require manufacturers to list allergens ... (reason? they sell a book with the same info)

They campaign for biopsy only being recognized ....

They have buried research paid for by the charity when it has been in conflict with their 'sponsors'.

(This researchg is available because it was a published post doc thesis yet even though they then hid this information from their members)

The self appointed spokespeople are incredibly dangerous .... she has shown her colors by wholeheartedly saying McDo fries are safe.... which is something McDo's cannot say for themselves ...

gfp, I love your point with the laburnum! In the US, you could substitute "peanuts," and even the gluten-ignorant would understand! May I steal that point for future use????

Of course or you could use poison ivy ....

Are not - > A(i)nt .... hmmm

The apostrophe is for a contraction???.... where does the I come from....

As was said "There is no I in Team America"

"Yes there is"

LOL