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Help The Us Govt Define "gluten Free"

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ACDA Launches Survey to Assist FDA on Gluten-Free Labeling

The FDA's proposal for labeling products 'gluten-free' was published on January 23, 2007. The FDA has requested feedback from consumers on several issues relating to the gluten-free diet, and how individuals make choices about gluten-free products.

Today, the American Celiac Disease Alliance (ACDA) is launching a survey focused on several questions posed by the FDA. The survey was developed by dietitians with expertise in the gluten-free diet and who are associated with the Dietitians in Gluten Intolerance Diseases (DIGID), a specialty subunit of the American Dietetic Association.

Please take a few moments to complete this very important survey. The results will be compiled and presented to the FDA by the ACDA.

To access the survey go to the ACDA website

www.americanceliac.org/news.htm

Your comments will help the FDA decide what type of gluten-free labeling will be allowed in the United States. The survey closes on March 15, 2007.

Thank you for being an advocate for celiacs.

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Thanks for the post . . . I just completed the survey and it took only five minutes!


2010- Gluten, Soy, Corn, Dairy, Eggs, Nut free. Sugar, non-gluten grains lite(Yes, still plenty to eat!)

2010-Doctor diagnosed me as Celiac then took diagnoses back, then said avoid gluten for life

2009

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Me four.................ah, I mean, too. :P


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

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

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Just did mine.


"Throw yourself a pity-party and you'll be the only guest." - Earlene Fowler

Diag. Celiac Disease by positive blood test 2/03/2004

Allergies - corn, soy, casein, egg whites and wheat

Morphia Scleroderma

Osteoarthritis

Hypothyroid and Hperthyroid

Essential Tremors

Asthma

Migraines

Fibromyalgia - diag. in 1978 when they called it Fibrositis

PAD Peripheral Artery Disease

Angina and Atrial Fibrillation

Gluten Ataxia

Vitiligo

Scoliosis of the spine (caused by malabsorption and it is horribly painful) This would be enough reason for someone to go gluten free.

Ocular Myastenia Gravis

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Survey for Celiac Alliance

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

I don't believe it. There is a survey about gluten-free labeling and even the people who do not have the gold standard diagnosis can participate. OK, gang, make our voice heard and fill out the survey. http://www.americanceliac.org/news.htm

If you scroll down a bit, there is a link to sending comments directly to the FDA.


Deb

Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

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Thanks you both for that information. I just did mine. But, it does make you think a little.

I guess your answers can reflect in your experience/time into the diet and your trust of manufactures to list correctly.

I have to admit that when I was dx'd, I bought alot of gluten free foods. I also have to admit, that they are still here and I don't want to eat/fix/bake them. I have learned to deal without and eat well.

When fresh green beans get labled gluten free, now that's over the top. :(


Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

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Thanks for posting this!


***************************

Beverly

Gluten free since 2005

In the midst of winter, I found there was within me an invincible summer.

Albert Careb

36_35_6[1].gif

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Guest cassidy

Thanks for posting this. I forwarded the link to my local celiac group so that they can get the word out.

I just wonder how many people react at a level of 20ppm. I know I'm very sensitive and every time I have gotten sick it has been from some tiny crumb because I'm very careful, but I don't know how much does make me sick. I would hate for them to say 20ppm is ok and that still be an amount that gets the very sensitive people sick - that would be worse than no labeling at all.

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Thanks for posting this. I forwarded the link to my local celiac group so that they can get the word out.

I just wonder how many people react at a level of 20ppm. I know I'm very sensitive and every time I have gotten sick it has been from some tiny crumb because I'm very careful, but I don't know how much does make me sick. I would hate for them to say 20ppm is ok and that still be an amount that gets the very sensitive people sick - that would be worse than no labeling at all.

I agree and though this doesn't directly affect me like you guys I'd say the easiest way is pretty obvious....

Gluten Free should always mean gluten-free.... pure and simple and the limit should be if it can be detected by any method then its not gluten-free.

This gives them something to aim for....

Because of CC and mixed product lines and just plain accidents you can just have a catergory for "very low gluten". Because of the way different levels are tested and relative costs in testing then 20ppm is a sensible cut off.

I can warn about what happened in Europe using the 200ppm and perhaps this is useful but basically companies figured they had some "slack" to play with. Many of the gluten-free breads used wheat products (deglutified) etc. and the 200ppm which was sorta designed as a limit the companies could go up to ended up being a limit they aimed for because there was no certification they could aim for that meant 100%....

I know myself I can eat certain gluten-free breads with wheat starch at <20ppm but I can't eat a lot of it... or regularly. The problem seems to be that the effects of even tiny amounts of gluten are cumulative...

Its totally possible to make 100% gluten-free if you have an audit trail on the supplies and don't use additives. but unless the manufacturers are given something to aim for why would they bother??


Fere libenter homines id quod volunt credunt. (JC, De Bello Gallico Liber III/XVIII)

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Thanks for posting this! I just did mine...interesting questions...

I hope many, many people take the time to do this; it only takes a few minutes!


Gluten-free since 10/05 - Positive dietary response with Doctor's validation! - Debilitating migraines, constant dizziness and lightheadedness gone; anxiety & panic attacks, depression, agoraphobia and extreme exhaustion considerably lessoned

Dairy/Casein Intolerant

Soy, Cabbage, Sugar, Peanut, Shellfish, Caffeine, Egg, Potato and Tomato allergies / intolerances

Sporadic reactions to: Poultry

Avoiding all preservatives and additives

Also Multiple Chemical/Environmental Sensitivities

Mitral Valve Prolapse

Pulmonary Embolism - 1999

Dance, when you're broken open.

Dance, if you've torn the bandage off.

Dance in the middle of fighting.

Dance in your blood.

Dance, when you are perfectly free.

RUMI

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I did it too. I agree with gfp... Gluten free should mean gluten free. I will likely not trust labels anymore if they keep in at the 20ppm level. That would be a real shame. I'll have to go back to eating only meats, fruits, and vegetables. Ugh...


~Angie~

Gluten free since May 2004

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The questions about oats have me freaked out. I would be really upset if they label oat-containing foods gluten-free.


Gluten-Free since September 15, 2005.

Peanut-Free since July 2006.

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The questions about oats have me freaked out. I would be really upset if they label oat-containing foods gluten-free.

I know- me too! I know the protein is different but I don't think it's been definitively proven that oats DON'T do damage. Does anyone know otherwise? If oats were not cross-contaminated would they be safe? I woouldn't eat them, but I'm curious.


***************************

Beverly

Gluten free since 2005

In the midst of winter, I found there was within me an invincible summer.

Albert Careb

36_35_6[1].gif

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I know- me too! I know the protein is different but I don't think it's been definitively proven that oats DON'T do damage. Does anyone know otherwise? If oats were not cross-contaminated would they be safe? I woouldn't eat them, but I'm curious.

I'm pretty certain there is as much evidence in both directions....

Since this is a health issue then IMHO they should be labelled....

However I don't think they should be labelled "gluten" since this is technically incorrect and once you actually take a step away from "gluten free" meaning exactly that you are inviting all sorts of exceptions.

When you look at the whole way its been done in Europe the justification is that we are too stupid to understand .. its the same with additives and "E" numbers. I find that very concept disturbing. If it disturbs someone to have a list of additives making up 90% of the label then perhaps they should think of reducing the additives, not the numer of numbers/letters it takes up on the jar.

If you ever read shampoo etc. its entirely the opposite... instead of writing water they write "aqua" and then a whole load of invented words like "enriched with <insert catchy phrase here>" ...


Fere libenter homines id quod volunt credunt. (JC, De Bello Gallico Liber III/XVIII)

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I know- me too! I know the protein is different but I don't think it's been definitively proven that oats DON'T do damage. Does anyone know otherwise? If oats were not cross-contaminated would they be safe? I woouldn't eat them, but I'm curious.

From what I've read the protien in oats is starting to be different enough from the wheat gluten protien that some celiacs react and some don't (and I mean an actual autoimmune reaction, not just symptoms of glutening because some celiacs are asymptomatic even when damage is being done). I have no idea if I react, but I choose not to eat oats. Not worth it. And I didn't like oatmeal much anyhow so no biggie.

This reminds me of England. Some things are labeled gluten-free but contain wheat starch. I know in those cases wheat starch is tested to be below a certain number of ppm, but if it's got a few ppm and I eat several, that's might put me over the limit. Again, not worth it.


Gluten-Free since September 15, 2005.

Peanut-Free since July 2006.

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Oh, and I answered the "if we determine oats are gluten-free how do you want them labeled?" with OTHER: "I will not eat oats even if you do think they're gluten-free."


Gluten-Free since September 15, 2005.

Peanut-Free since July 2006.

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From what I've read the protien in oats is starting to be different enough from the wheat gluten protien that some celiacs react and some don't (and I mean an actual autoimmune reaction, not just symptoms of glutening because some celiacs are asymptomatic even when damage is being done). I have no idea if I react, but I choose not to eat oats. Not worth it. And I didn't like oatmeal much anyhow so no biggie.

This reminds me of England. Some things are labeled gluten-free but contain wheat starch. I know in those cases wheat starch is tested to be below a certain number of ppm, but if it's got a few ppm and I eat several, that's might put me over the limit. Again, not worth it.

Exactly my experience. If I have the under 20ppm bread I can perhaps get away with a couple of slices ..at least as far as GI

symptoms but who can say what damage its causing. but I know from experience if I eat it all then I'll be ill.

I have no idea if I react, but I choose not to eat oats. Not worth it. And I didn't like oatmeal much anyhow so no biggie.

Well, I have to say, I'd quiite like some oat flapjacks and real oatcakes ... BUT even so I still agree, its just not worth it.

I think the only test I would be happy with would be screening me direct for antibodies.... and quite simply if they elevated at all then NO.


Fere libenter homines id quod volunt credunt. (JC, De Bello Gallico Liber III/XVIII)

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I doubt anyone will ever start labeling fresh produce or eggs (in their shells) as gluten-free, but the other month, I realized some frozen veggies I bought had wheat in them. WHY???? :huh: There was nothing on the front to tell me to expect anything other than fresh, frozen veggies. It was not until I saw that they were not on the "gluten-free" list that I even thought to make sure if they were okay. So I'm all for a gluten-free label being allowed on anything that is actually gluten-free. Even "pure" rice flour. That way I know it hasn't been processed on a line that processes wheat flour.

I think the statement "all rice flour is gluten free" is a terrible idea to put into people's heads--especially newbies. There is just too much room for the introduction of gluten into things that many people would expect to be gluten-free (whether by contamination or "hidden gluten" ingredients). So I say allow companies to label away! (as long as that label actually means something.) :D


Gluten-Free since February 2006

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I doubt anyone will ever start labeling fresh produce or eggs (in their shells) as gluten-free,

I've actually seen that label on eggs in other countries. :lol: It's pretty funny.


"Let food be thy medicine, and let thy medicine be food." - Hippocrates

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I read something today that said that 0-2ppm is not even testable - That the lowest amount that's testable is 3ppm. So I suggested that 3ppm be the allowable limit. I'm not concerned about eating one thing that is 20ppm - I'm concerned about the cumulative effects of eating SEVERAL things each day that might have 20ppm.

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yeah, like that "how much do you think 20ppm is: 1 TSpn, etc" I said other: "depends on the serving size!" 20ppm in a vitamin is a different animal than 20ppm in an entree....

but I'm with y'all: if I eat 3 or 4 things that are low gluten, how sick am I going to get? I learned about cumulative glutening with a medicine. Took me 2 weeks to start having symptoms.

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I read something today that said that 0-2ppm is not even testable - That the lowest amount that's testable is 3ppm. So I suggested that 3ppm be the allowable limit. I'm not concerned about eating one thing that is 20ppm - I'm concerned about the cumulative effects of eating SEVERAL things each day that might have 20ppm.

Its completely testable, it just costs more....

Indeed its possible to test down to 1 millionth part of this in ppb, the testing is just way more expensive and takes much longer.

When people quote lower testing limits they are regarding a specific test... commonly for gluten these are ELISA tests which have then benefit of being cheap and quick but the disadvantage of not providing quantitive analysis at low concentrations...

Secondly all testing has two method based limits (method being the term used for the recipe followed in testing) the first is the MDL or minimum detecting level and the second being MRL or minimum reporting limit.

MDL means a substance was detected but the test was not able to give an accurate quantitive test within those limits...

MRL is a legal definition, it is defined by legislation according to what is being tested for...

It is possible to test for gluten or its consituents in parts per billion, but to accurately determine 100ppb from 200ppb is much harder/more expensive.

The major reason tests are expensive however is how popular a test is.... for instrumentation based analysis like GC-MS you also have expense in sample prep and consumables, to analyse for different substances quantitively means changing the column to one which is specific to that class of compounds... thus $500 minimum for a single sample ... just for the column but then the machine needs to be completely recalibrated which means standards, sample prep and machine time... hence switching to quantitive gluten as a one off is going to cost in the thousands .... BUT if the machine is already set-up and calibrated for gluten it costs machine time, tech time and sample prep time... as part of an ongoing analysis your talking change from $20.... vs $2-3 for ELISA tests.

What I m saying is the regulations to a large extend determine the cost of the tests. No food company is forced to test to ppb so the tests are not set-up and waiting... thus if a speciality gluten-free company wants to test its prohibitively expensive. Meanwhile for the big food companies like the Phillip Morris group, Danone and Nestle it is far from being in their interests to have these tests...

If the tests were available and cheap then legislation might make them use them! If they did that then they would have to start putting trace of gluten on a lof of stuff they get away with right now.

Kraft make a bid deal about "never intentionally hiding gluten", but they then go to great lengths NOT to find out... some how I don't think they care if it has gluten in it or not, merely that they have to label it as such. Remember this is the same company funded research to cast doubt on cigaretes causing cancer for 50 years....


Fere libenter homines id quod volunt credunt. (JC, De Bello Gallico Liber III/XVIII)

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