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In Defense Of 20 Parts Per Million


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#31 Jestgar

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Posted 22 September 2011 - 01:59 PM

But at the same time? I'd ask one question: who is this legislation for, the businesses or the celiacs?

For me. And my specialty food is expensive enough, thank you very much. As with anything, your health is ultimately in your hands. Teenage boys shouldn't be packing down pounds of processed food anyway, and if you can learn to navigate the myriad sources of gluten, and never during this process of education manage to stumble upon the definition of gluten-free as "20ppm or less", you still shouldn't be filling your diet with enough packaged foods to put you over the limit.

While I understand your desire to have it lowered, I don't want to pay the consequences (or the price) of that.
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#32 Lisa

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Posted 22 September 2011 - 02:19 PM

Remembering my gluten free world seven years ago, I'm just grateful for what we have achieved and the future is exciting. :D
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#33 GlutenFreeManna

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Posted 22 September 2011 - 02:30 PM

I've been thinking this subject over since they came out with the proposal. As someone that is very sensitive and can't use very many so called "gluten-free" products I would be okay if the law only required testing to 20 PPM. However, I have a few additional things I would like to see on the label as well:

1. I would like to see companies be required to put on the package how sensitve of a test they use. Or for some type of coding system so that we can tell with just a glance that the product was tested to 20, 10 or 5 PPM. Organic products currently have to be labeled in this way with a different symbol/different terms for 100% organic, 95% organic or 70% organic. I don't see why they couldn't come up with something similar for showing the extent of the gluten-free status of gluten-free products.

2. I would like to see companies required to put a "processed on the same equipment as X" statement. Currently such a statement is voluntary.

3. I would like to see companies required to state if the product contains barley, rye or oats (even if the product tests as gluten-free as defined in the law). Currently they only have to disclose wheat. While I know that very few products fall in this category the few that do (such as Rice Dream milk) can make someone that is sensitive sick.

If these criteria were met along with the 20 PPM proposal I feel it would be easier for those of us that are more sensitive to discern the risks and make an educated choice on whether to use the product without having to call or e-mail companies. If these criteria are not part of this new law then we will be not much better off than we are now but it will be a start. Those that are super sensitive will still have to contact companies claiming to be gluten-free to ask about processing procedures (or just not use any non-whole food products). I see this 20 PPm as only a begining point and it would be slightly more than what we have now which is no regualtions at all. Hopefully companies that choose to use the more sensitive tests would continue to do that and be rewarded with increased business from those of us that want to be more careful.
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#34 admin

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Posted 22 September 2011 - 02:51 PM

GlutenFreeManna, it is highly doubtful that you will see a complete rewrite of these regulations at this point, and the way you put things here would be completely opposed by the food industry as it would be very expensive indeed. The ppm of gluten can vary per batch, and packaging is very expensive--how can a food company make multiple types of packaging for each level of gluten that different batches might have? The more complex you make this, the less people with understand it, and the less likely it will be to get passed. The more expensive you make it to implement the more industry and consumers will oppose it.

Again, you can work to derail well over 10 years of hard work that is supported by most experts in the field, including medical doctors, or you can support it and view this as 1) much better than what we have now (which is nothing); 2) a great strating point that can be improved later. I chose to support this the way it is now.

I believe that the current regulations do specify what test is to be used to demonstrate compliance.

Take care,
Scott
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#35 GlutenFreeManna

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Posted 22 September 2011 - 03:03 PM

GlutenFreeManna, it is highly doubtful that you will see a complete rewrite of these regulations at this point, and the way you put things here would be completely opposed by the food industry as it would be very expensive indeed. The ppm of gluten can vary per batch, and packaging is very expensive--how can a food company make multiple types of packaging for each level of gluten that different batches might have? The more complex you make this, the less people with understand it, and the less likely it will be to get passed. The more expensive you make it to implement the more industry and consumers will oppose it.

Again, you can work to derail well over 10 years of hard work that is supported by most experts in the field, including medical doctors, or you can support it and view this as 1) much better than what we have now (which is nothing); 2) a great strating point that can be improved later. I chose to support this the way it is now.

I believe that the current regulations do specify what test is to be used to demonstrate compliance.

Take care,
Scott


I was not saying that they should put exactly how much each batch tested to but that they should put how sensitive of a test was used for that product. I.E. "This product tests to below 20 PPM" or perhaps the no gluten symbol and a 20 to indicate that a 20 PPM test has been done. The no gluten and 10 or no gluten and 5 could be volunatary symbols for companies that choose the more expensive, lower level testing. I think you must have misread my response because I agreed that this is more than we have now. I nowhere said that I want to "derail 10 years of hard work".
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#36 admin

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Posted 22 September 2011 - 03:16 PM

Thanks for the clarification GlutenFreeManna. If the regulations are passed and a company uses the term "gluten-free" on the label, then they are in effect saying that their products are guaranteed to contain less than 20 ppm gluten using the Elisa assay testing method. So it would be a legal declaration on their part, and they would be liable for it in many ways.

There are already at least 3 independent gluten-free certification organizations that each do things a little differently, so any manufacturer is free to work with those organizations and add their logos to their packaging should they want to offer more than just the term "gluten-free" would guarantee.

Take care,
Scott
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#37 come dance with me

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Posted 22 September 2011 - 05:49 PM

We don't have 2 working parents here but I'm a sole parent who works a lot of hours each week with very little time off. We have a lot in our freezer that was made from scratch. Much of that was from our own back yard too. I have a chickpea curry in the slow cooker now that will make a lot of meals to freeze. The carrots, pumpkin, capsicum, potatoes, zucchini, silverbeet, and onion were all grown in either our backyard or our friend's backyard. We have banana bread in the oven at the moment too made from bananas grown in my brother's yard. Yes it's a lot of work, and a lot of time in the kitchen, but I've always been this way even before we found out that my LO can't have gluten. It's better for us, better for the environment, and a whole lot cheaper too. I think you can trust them if you want to and you can make all the excuses in the world about why you have to buy processed food, or you can read the label then make up your mind about it rather than trust it then be angry that it's not to you needs. We also have zucchini and silverbeet slice in the oven for lunch that will make enough to freeze for another day too. When I'm not at work I'm in the garden or the kitchen. We travel a lot too :)
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#38 T.H.

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Posted 22 September 2011 - 06:05 PM

T.H. - What does "Fat Free" mean to you...and what does it mean in a label regulation? Probably something completely different, right? The government has been regulating such things for many years. What is low sodium to some might actually be high to others, yet the government may have a regulation about its use on a label to protect a majority, but not all, of the people its use might affect.


While fat and sodium are regulated, I think this more a case of comparing apples and oranges. Differences of even 100-200 ppm for fat or sodium are typically not going to cause harm to the people who are using the products. That cannot be said of celiacs and gluten-free products.

Opposing this regulation, after so many years of work and support by many experts is really you just saying that no regulation is a better alternative, as that is the only outcome here...they either pass it they way it is written or there won't be a regulation (at least that is my take on the situation).


Fair enough. Yes, the proposed law doesn't discuss low gluten vs. gluten free. And sometimes I don't think about that as much when I'm getting fired up about this, I'll admit it. I don't know enough about some aspects of the law to be able to fully understand what might need to be accomplished before a change like this might be able to come into being. So, not attempting a red herring really, just suffering from imperfect knowledge about the law.

Just theoretically speaking, however, support and time spent on a regulation doesn't always reflect its worth. I think a GOOD regulation would be a much better alternative than no regulation. A bad one? I really don't know. I'd like to say any regulation would be better than none, but I seriously worry that it will not, considering our country's history. Decisions made about GMO products comes to mind.

Is it better to go without regulation for longer and get it right in the end, or better to come up with a regulation that might make things worse and attempt to fix it later? My limited knowledge about the law would suggest that no law is better than a bad law. But regulations - I don't know how much more difficult/easier these are to fix. Considering it took ten years just to get to this point? I'm thinking fixing a bad regulation might be rather hellish, especially if businesses are in favor of it.

Obviously the government, with the help of experts like Dr. Fasano, is in the business of defining what it means in order to protect people, and most experts agree, based on years of research, that 20 ppm is indeed a safe level...


I must admit, I have a very different view of things. My faith in our gov't regulation has dropped like a stone over the last few years. They are in the business of protecting the population, sure - I just think they're failing at it. I used to have faith in their regulations, and I trusted my food was safe, but that faith is gone now. There have been too many things that were passed with what seems to be more concern for the food industry than the population who'll be affected by eating it.

The years of research on 20 ppm foods has one major flaw - how can anyone claim that this level is safe for celiacs when the only celiacs who are allowed in the studies are those who can eat this level safely? Anyone who is sick on this diet doesn't make it into the studies, because when eating the <20 ppm diet that the experts are telling them is safe, they aren't healing. So they're automatically eliminated from the potential participant pool, which leaves all those studies without a truly representative sample to draw conclusions from.

Maybe it seems strange that, having so little faith in the system anymore, I'm even participating in the conversation. I suppose somewhere inside, I keep hoping that something can be done in a way that shows true concern for the people, because I WANT our gov't to work. I would hate to see the law get tabled, but I argue this not to be contrary, but because I really, honestly believe that a gluten free label, the way it's set up now, will cause our population problems.

I'm sorry Shauna, but I don't understand why you want to argue with this. You have repeatedly expressed that most things that should be gluten-free are not. As a super-sensitive, I can't imagine you would eat a prepackaged gluten-free food even if it tested at the 5 ppm or less.


You're right, I wouldn't. I got involved in this mostly due to my family - probably one of the reasons I get very, um, het up about it. ;)

None of them are sensitive like I am, but they're all having trouble in one way or another. My father eats a <20 ppm diet and is still suffering from symptoms that worsen every year. My brother still has problems from foods that are tested to <20 ppm. Not all of them, but some - often if he's eating a lot of processed foods, is our guess, because he's a big man (6 1/2 feet) and so eats a lot of food. My two children have trouble with this. My daughter because she seems a little more sensitive than average, and my son, if he eats too many processed gluten-free foods, seems to hit his limit.

I have a lot of older friends, as well, and the more gluten-free foods become available, the more they eat, and now, 5-10 years into the diet, many of them are slowly getting sicker rather than better. It's frightening to see so many people I care about doing so poorly on a diet that is supposed to be safe for them. And probably that's why I am so concerned about the safety of this ppm for our population, because the section of the population I'm seeing on a daily basis isn't doing so great on it.

I want to see foods that are safe for my family and friends and heck, for my grandkids whenever that happens, because it's good odds that they'll need to be gluten-free too. And I truly don't think this law, as it stands now, is going to make that happen. But it will give us a false sense of security that it HAS made that happen, and that has the potential to make it even worse.
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T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive


#39 kareng

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Posted 22 September 2011 - 06:36 PM

I'm one who deals with low sodium for my hub & mom. What is low sodium for most, isn't for them. But the fact that there is an awareness, helps me find things with no salt or a bunch less.

I think that having the gluten-free law will help with the awareness & labeling. Right now, really, except for Celiac/ gluten intolerance & their families, who cares what the standard is or if there is a standard? Maybe 7% of the people. Personally, I think the lower the standard the better. Is it practical at this time? Probably not. But it's a starting point. If we actually have a law, we have something to work with. We have something to tweak. From what I have seen in health care law, it's easier to " tweak" a current law then get a new one. The gov't never gives us the law exactly as we want it. Look at HIPA. It isn't what I suggested 20+ years ago. It isn't even as good as most state laws. But it's a start. It got health info privacy some publicity. It got people thinking about it and making policies. I wanted a much tougher one. But it seems to work better than before in the majority of cases.

In the end, we are all in this together. People from very different places and backgrounds. Even different ways that the disease effects us. This is the blessing and curse of Celiac/ gluten intolerance.
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#40 T.H.

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Posted 24 September 2011 - 10:23 AM

In the end, we are all in this together. People from very different places and backgrounds. Even different ways that the disease effects us.


Very true. And that's kind of a comforting thought. Because whether the law ends up being good or bad, or whatever is passed, if there's evidence that it is causing trouble? It's been made clear that the celiac community as a whole is very willing to stand up and fight for changes.

That actually helps somewhat, thanks for the reminder. :-)
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T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive


#41 beebs

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Posted 24 September 2011 - 05:52 PM

I've been thinking this subject over since they came out with the proposal. As someone that is very sensitive and can't use very many so called "gluten-free" products I would be okay if the law only required testing to 20 PPM. However, I have a few additional things I would like to see on the label as well:

1. I would like to see companies be required to put on the package how sensitve of a test they use. Or for some type of coding system so that we can tell with just a glance that the product was tested to 20, 10 or 5 PPM. Organic products currently have to be labeled in this way with a different symbol/different terms for 100% organic, 95% organic or 70% organic. I don't see why they couldn't come up with something similar for showing the extent of the gluten-free status of gluten-free products.

2. I would like to see companies required to put a "processed on the same equipment as X" statement. Currently such a statement is voluntary.

3. I would like to see companies required to state if the product contains barley, rye or oats (even if the product tests as gluten-free as defined in the law). Currently they only have to disclose wheat. While I know that very few products fall in this category the few that do (such as Rice Dream milk) can make someone that is sensitive sick.

If these criteria were met along with the 20 PPM proposal I feel it would be easier for those of us that are more sensitive to discern the risks and make an educated choice on whether to use the product without having to call or e-mail companies. If these criteria are not part of this new law then we will be not much better off than we are now but it will be a start. Those that are super sensitive will still have to contact companies claiming to be gluten-free to ask about processing procedures (or just not use any non-whole food products). I see this 20 PPm as only a begining point and it would be slightly more than what we have now which is no regualtions at all. Hopefully companies that choose to use the more sensitive tests would continue to do that and be rewarded with increased business from those of us that want to be more careful.


Wow- I never realised how lucky we are in OZ until this post. Everything that is made in Australia has to state if it has wheat, barely, rye or is processed on any of those lines. It also has to have "may contain gluten" if there is any chance of it. It must be so difficult to sort through all that stuff over there :(
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#42 T.H.

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Posted 24 September 2011 - 08:21 PM

... Everything that is made in Australia has to state if it has wheat, barely, rye or is processed on any of those lines. It also has to have "may contain gluten" if there is any chance of it. It must be so difficult to sort through all that stuff over there :(



You get really used to making a LOT of phone calls, especially if you react to something and you're trying to figure it out. :(
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T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive


#43 come dance with me

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Posted 24 September 2011 - 09:47 PM

Wow- I never realised how lucky we are in OZ until this post. Everything that is made in Australia has to state if it has wheat, barely, rye or is processed on any of those lines. It also has to have "may contain gluten" if there is any chance of it. It must be so difficult to sort through all that stuff over there :(


We are lucky indeed. I'd never move away from Oz.
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#44 beebs

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Posted 25 September 2011 - 03:32 PM

You get really used to making a LOT of phone calls, especially if you react to something and you're trying to figure it out. :(


Ack! That sounds horrendous! I cant afford to get glutened! I'd be eating meat and veg if I was over there. Its good to know about the bobs mill stuff as they sell it here and I was going to buy it!!
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#45 mbrookes

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Posted 27 September 2011 - 12:37 PM

Some people will never be satisfied. Admittedly, I am not a supersensitive. I do, however, have a granddaughter with a peanut allergy. Should all peanuts be banned? Or is the food supply actually what is good for most people?

Without getting on a political soap box (which I really love to do!) we need to look at what is the responsibility of the government and what is personal responsibility. If a food lists wheat I don't eat it. I don't care how much wheat. If a person is supersensitive he/she must do what is best for him/her.

I would hate to see Udi's, General Mills, Schar and a host of others stop producing foods I can eat because of too stringent government regulations. And that is what would happen.
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