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VegasCeliacBuckeye

Help The Us Govt Define "gluten Free"

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I just did some fuzzy math (math is NOT my strong suit, so feel free to double check my numbers). But in the US, we consume an average of 775 grams of food per day per person.

So 20ppm x 775g/1000=15.5mg/day.

Studies show that we should consume less than 50mg of gluten/day. Though one person in the study did get sick off a regular dosing of 10mg/day. So you could say that for most of us, we could double the amount of gluten allowed and still be safe, even if everything we ate maxed out at the 20ppm. I prefer to be more conservative and look at it as "if one person had a clinical relapse at 10mg a day, shouldn't THAT be the threshold??"

In reality I don't eat nearly that much in a day. And most of what I eat is naturally gluten-free (eggs, meat, veggies...). Many days only the spices or sauces come into question of whether or not they have ANY gluten at all. But to be generous, let's say I eat 600g of food/day and 50% of what I eat (gluten-free bread, pasta, crackers, sauces, snacks, etc) would fall into these labeling guidelines and that all of these products max out at 20ppm.

So 20ppm x 600g/1000 x 50% = 6mg/day.

That would put me below the 10mg/day, and I'm comfortable with that. But more importantly, by knowing the threshold, we can take more control of our diets and manage how much "gluten-free" stuff we consume based on the level that makes us feel safe. As it is, we have no idea how much gluten we are getting out of these "gluten-free" products. Yet we don't want to make the guidelines so strict that nothing will qualify as gluten-free and we will be back to eating either 100% naturally gluten-free items or guessing how much we are consuming in a day.

See

https://www.celiac.com/st_prod.html?p_prodid=1411

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I just did some fuzzy math (math is NOT my strong suit, so feel free to double check my numbers). But in the US, we consume an average of 775 grams of food per day per person.

So 20ppm x 775g/1000=15.5mg/day.

Studies show that we should consume less than 50mg of gluten/day. Though one person in the study did get sick off a regular dosing of 10mg/day. So you could say that for most of us, we could double the amount of gluten allowed and still be safe, even if everything we ate maxed out at the 20ppm. I prefer to be more conservative and look at it as "if one person had a clinical relapse at 10mg a day, shouldn't THAT be the threshold??"

In reality I don't eat nearly that much in a day. And most of what I eat is naturally gluten-free (eggs, meat, veggies...). Many days only the spices or sauces come into question of whether or not they have ANY gluten at all. But to be generous, let's say I eat 600g of food/day and 50% of what I eat (gluten-free bread, pasta, crackers, sauces, snacks, etc) would fall into these labeling guidelines and that all of these products max out at 20ppm.

So 20ppm x 600g/1000 x 50% = 6mg/day.

That would put me below the 10mg/day, and I'm comfortable with that. But more importantly, by knowing the threshold, we can take more control of our diets and manage how much "gluten-free" stuff we consume based on the level that makes us feel safe. As it is, we have no idea how much gluten we are getting out of these "gluten-free" products. Yet we don't want to make the guidelines so strict that nothing will qualify as gluten-free and we will be back to eating either 100% naturally gluten-free items or guessing how much we are consuming in a day.

See

https://www.celiac.com/st_prod.html?p_prodid=1411

The math looks OK for me but it still boils down to how much is too much?

Its a toughy ....

My problem is the studies almost always depend on villous damage... not serology as to defining "damage" ...

One thing I know from personal experience is my GI reaction occurs at higher levels than my neurological one.

Secondly villi repair just like aeoli in the lungs do from tar damage but it is the forced cell division at rates they are not meant to divide at that causes increased cancer risk... (in any individual)

It seems to me that even if the villi can keep up and not be destroyed faster than they can be repaired this isn't good.

You can add lots of secondary conditions to the list, adrenal failure etc. happen because of a long drawn out wearing down of the glands, hypothyroid and hashimotos the same not to mention peripheral neuropathy etc.

This makes me believe that long term health in celiacs is not simply related to destroying villi.

Anyway, besides any of this, if it makes 1 celiac in 5000 sick isn't that one to many?

I chose those numbers specifically because those are the old numbers for celaic diagnosis in the US.... at a time when many of those 1:5000 were fighting for recognition.... but the general populace were liable to say "but its only 1 person in 5000 why make special labels"

Its easy to look back now with screening figures of 1:100 and say it was the correct thing to do.

One constant I have learned working in science all my life is a "safe dose"almost always gets adjusted down.

New complications arise and unforseen side effects get confirmed.

Not long ago it was 200ppm ... now its 20, what will it be tomorrow?

Yet we don't want to make the guidelines so strict that nothing will qualify as gluten-free and we will be back to eating either 100% naturally gluten-free items or guessing how much we are consuming in a day.

Yes and I completely see the point ... which is why I say the best thing is the manufactuerers have to test and label...

If they claim 20ppm then they get hit by huge fines if it exceeds a 20% tolerance, noone is forcing them to make any claim ... they could say 200ppm and let the consumer decide...

But what is certain is that their needs to be a mechanism to really hurt the companies that disregard this or make false claims...

One continually amusing post on here is "Kraft are nice and won't willingly hide Gluten" ...

This is almost laughable....

http://www.altria.com/

Even after the spin-off Kraft will be run by the same people and have the same shareholders as its parent group...

It seems to be a little like putting the wolf to guard the sheep to think that Phillip Morris Tobacco has never made false statements about the effect of tobacco or hidden research... indeed its a matter of court record.

What you got to ask is what happens if they do willingly hide gluten because you can be absolutely certain that they have a team of lawyers and accountants weighing up the risks?

There is only one way to prevent them making false claims or deliberatly mis-informing themselves so that it wasn't "deliberate they just didn't ask" ... and that is through fines.

As of last year their revenue was declared at 97.854 billion USD ... so put your numbers to work.

If they can save 1% by deliberatly not asking a supplier if their product contained gluten then how much is that? How much could an individual hope to gain by sueing them?

I'll leave the numbers up to you... I loose track after a billion $....

I don't think Kraft are specifically bad... I think they are just another company maximising profit. they are just an easy example because they are owned by the same people as Phillip Morris ...

Do I trust them? Fraid not....

Their aquisition of Nabisco didn't suddenly put Nabisco into the hands of the big bad big tobacco....

It was previously woned by "RJR Macdonald, Canada

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I did the survey as well. I think the more labeling the better. My eyesight is bad as it is sooo, the less I have to read the fine print ingredients, the better. As long as the food really is gluten-free and doesn't have 19.99999 (infiniti) ppm. I could completely see Co.s doing that. Oh well, Rome wasn't built in a day, labels won't be controversy free anytime soon.

At least the word is getting out more and more. Each time I go to the store, I am finding more products with labels. I just hope they play it safe. After all, were'nt we all taught that no means no?

I keep my fingers crossed.

Kate

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Guest jokamo

I just did the survey too! I think I may have had mild celiac all my life, but I was dx'd with lupus and fibromyalgia in 2001 and the gluten free diet has really helped with my pain! I think the celiac contributed to my lupus and fibro diagnosis.

Anyway, I put my two-cents in.

Jodi

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Hi,

I'm a freelance writer working on an article on celiac disease for a free magazine put out by the Publix supermarket chain -- prevalent in the southeast. Would anyone be willing to do a 15 minutes telephone interview sometime tomorrow with me for the piece? It would just be on what it's like to live with the disease and follow the diet.

Thank you much!

Gail Zyla

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I just finished taking the survey, also.

I have Celiac disease, and for me, I've found it very frustrating to go shopping and not be sure whether or not some of the processed foods I am buying are really gluten-free or not. I often buy a brand of frozen meals called Amy's (many of you may know/use this brand), and I just noticed the other day that the Rice Macaroni & Cheese meal that they make is processed in a plant that also processes wheat. The label on the front states "No Gluten Ingredients", which is technically correct, but to me it is misleading. It seems as if manufacturers are to use the words "no" and "gluten" in conjunction, then it should mean that there is absolutely, positively no gluten in the product at all, whether it be from direct ingredients or possible contamination. "No Gluten Ingredients" is fine and dandy for someone who is trying to avoid gluten as much as possible, but for an individual with Celiac disease, even a tiny amount of gluten will lead to further damage of the small intestine (and as those who know about Celiac disease know) and can lead to other serious health problems.

In summary, I think this is a very complex issue. It will remain a challenge for me to shop for a few years to come, but I think that after I get accustomed to buying certain ingredients and after developing esoteric knowledge about what is actually totally gluten free and what is not, everything should be fine. I'm glad to see that the FDA is making headway though...we are all entitled to know what is in the products we are buying when they could potentially harm our health.

Thanks a bunch for posting this information!

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Just did survey and thought it might be a good idea to bump this thread back up to the top since the topic came up again. Highly encourage everyone who hasn't taken it yet to do, it's a great chance for us, the people most affected, to make our voices clear.

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