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In Defense Of 20 Parts Per Million


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#46 auzzi

 
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Posted 27 September 2011 - 05:57 PM

The current definition of "gluten free" in Australia is 3ppm in accordance with the latest technology. In line with that, lots of gluten-free products at 5ppm are no longer permitted to label themselves as gluten-free..
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#47 weluvgators

 
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Posted 27 September 2011 - 06:56 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.


But does your granddaughter eat foods with up to 20 PPM of peanut in it? And is she advised (or not advised as we seem to be striving for with the current legislation) that this "processed food" should be limited to less than 1/3 of her daily diet? And getting foods from a peanut free facility seems to be far easier than tracking down dedicated gluten free facilities.

And why would Udi's, General Mills, Schar and a host of others stop producing food you can eat just because they don't qualify for a specific "gluten free" label - they would be able to write loads of other information on the package - or nothing at all - we can all read the ingredients, right?

I continue to struggle to understand the resistance to tighter legislation for food processing companies that want to advertise their food as "gluten free", a term that is essential for proper management of medical conditions.
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My super silly red siren is my guiding light. She has been a tremendous lesson for me in how gluten affects different people in very different ways. She is a super duper silly girl that was simply born that way. I have no idea why I am so blessed to have her guidance.

#48 admin

 
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Posted 28 September 2011 - 08:51 AM

T.H. if you don't trust the government at all then what difference does it make what the regulation says? It sounds like you are not going to buy it anyway, right? I think you should read Come Dance With Me's post and prepare your own foods, as it sounds to me like you don't have enough trust in governments or corporations to allow you to eat processed foods anyway (which makes me wonder what your motivations are in this discussion).

Many celiacs, perhaps you and your father included, don't take the time to explore all other food intolerance possibilities. I suspect that many people who believe that they are super sensitive celiacs and getting cross-contamination actually have additional undiscovered food intolerance, for example to soy, corn, casein, tomatoes, eggs, etc. It is very difficult to return to health if you are in this category and are still eating something that is offending to your system. I do no mean to try to diagnose you here, but I offer a possibility that many super sensitive people don't often consider. It can be extremely difficult and time consuming to find all intolerance issues, but, for many people, doing so is the only way to recover.

Take care,
Scott
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#49 T.H.

 
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Posted 28 September 2011 - 11:00 AM

I think you should read Come Dance With Me's post and prepare your own foods


Actually, I live pretty much exactly like that. It's not due to lack of trust in the gov't, it's due to the fact that even when I was so desperate I was eating only organic produce, and washing it well, I was sick as a dog. I can eat the exact same produce, grown in my own yard or grown by farmers without gluten derived products used in their fields, and I don't get sick at all.

T.H. if you don't trust the government at all then what difference does it make what the regulation says? It sounds like you are not going to buy it anyway, right?... it sounds to me like you don't have enough trust in governments or corporations to allow you to eat processed foods anyway (which makes me wonder what your motivations are in this discussion).


While not eating processed foods isn't a matter of trust for me, it is true that I'm pretty cynical when it comes to our government. I also think that things can get a lot worse without one. And I have hope that it can improve, as long as a country's people are vigilant in supporting what laws and practices work and fighting against what doesn't. My motivation in being involved in this, since you asked, in part involves my family and friends in the celiac community who do eat processed gluten-free foods, and my concern for them and how this law may affect them. Just because I can't eat this food doesn't mean I don't care about it.


Many celiacs, perhaps you and your father included, don't take the time to explore all other food intolerance possibilities... I do no mean to try to diagnose you here, but I offer a possibility that many super sensitive people don't often consider


That's actually a very common misconception. The idea that super sensitives haven't explored other avenues is pretty widespread, especially by those who haven't sat down and spoken with many of us about our experiences.

However, the reality is that super-sensitivity is typically considered as a last resort, not as an initial consideration. The vast majority of super-sensitives that I have met remain ill for months, or years, while they explore allergies, intolerances, sensitivities, vitamin deficiencies, SIBO - anything and everything that might explain why they can't recover and constantly react. Because being this sensitive to gluten seems insane - heck, most of us wouldn't have even known it was possible until we came across the concept somewhere else. We are sure that most of our gluten free food is safe, because that's what we were taught when we started the diet.

In my case, I was able to research the problem with the help of doctors, Dieticians, and testing. I figure I was lucky. When I figured it out, I had been dropping weight rapidly, growing progressively weaker and more vitamin deficient, unable to even take supplements because they made things worse. The doctors couldn't think of any more relevant tests to do - they were completely stumped. When I figured this out, my recovery was so pronounced that all my doctors are now convinced.

I can appreciate that it's hard to understand that super-sensitivity can exist and that it's not just people with over-active imaginations. Even bringing up the topic with other celiacs can often feel analogous to bringing up celiac disease with people who think it's a 'fad.' There's a lot of disbelief, and a lot of folks think we've jumped to some absurd, paranoid conclusion, perhaps because we got 'too focused' on gluten after our diagnosis.

Even for those that believe the condition exists in the numbers people are claiming, most believe that this issue is limited enough in scope that consideration for it shouldn't affect the making of a law like this. And we do seem to be a minority, it's true. But just because we can't partake of gluten-free food doesn't mean super-sensitive celiacs are no longer part of the community or that we can't have an opinion about the law.

Our experiences are not going to be the same as celiacs with less sensitivity, obviously, and maybe that's what has so many of us fired up about it. Because, as I mentioned before, super-sensitivity is usually the last thing we'd ever considered. We're sick for longer than we had to be, due to that. For some of us, hearing that 'no gluten-free regulations' meant that some gluten-free foods might not be safe was our first clue that gluten-free food might be our trouble. Without that, without an acknowledgment somewhere that our gluten-free food can actually cause trouble for some of us, super-sensitives are likely to be sick for even longer before figuring out what the issue is.

Some of us worry that a 20 ppm gluten free standard will result in that.

I'm not trying to argue about that aspect again, mind. Just from this last post, it sounds like some find it difficult to understand why sensitive people like myself care about the law at all. I hope maybe this might clear that up a bit.
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#50 admin

 
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Posted 28 September 2011 - 11:36 AM

T.H. -- But you said that you haven't even read the proposed regulations...am I missing something here???

Take care,
Scott
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#51 beebs

 
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Posted 28 September 2011 - 04:37 PM

The current definition of "gluten free" in Australia is 3ppm in accordance with the latest technology. In line with that, lots of gluten-free products at 5ppm are no longer permitted to label themselves as gluten-free..


Although I did read in the Coeliac magazine they are currently testing 20ppm on a study group - it looks like we are heading in the same direction.

I can see why people are getting scared and upset about this - it must be hard when you are the few who are very sensitive. I am not super sensitive - but I have severe reactions to eating gluten which can end up with me in emergency. So - I personally need to know when, where, how and if there is any risk of contamination at all I need to know. But generally people are very lackluster and they just don't get it! Just because the majority are not super sensitive does not mean it doesn't exist. Read up my gluten symptoms and you will only find them in pubmed and medical studies - it is not something even listed in celiac symptoms anywhere - doesn't mean it doesn't happen :)

And interesting that someone mentioned peanuts.. You are not allowed any peanut products at any school here - you are also not allowed to have peanut butter before attending some schools. Some parents get really agro about it - but hey - its a bloody peanut - who the heck cares? Its not about banning gluten - but how hard is it for a GLUTEN FREE company to be gluten free - not hard at all. You can't have it both ways. Seriously how bleeding hard is it to process your foods on different lines. Have a gluten free one and a non gluten free if you insist.

Anyone else notice that Macro who does a huge gluten free range processes their quiona and polenta on gluten lines - why do it for - the two things that celiacs would eat most!! Why not process them on the gluten free lines that they obviously have for all their gluten free stuff?? It is bizarre.

Or they could be like Freedom foods and have a completely gluten free factory...
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#52 sariesue

 
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Posted 28 September 2011 - 06:05 PM

Although I did read in the Coeliac magazine they are currently testing 20ppm on a study group - it looks like we are heading in the same direction.

I can see why people are getting scared and upset about this - it must be hard when you are the few who are very sensitive. I am not super sensitive - but I have severe reactions to eating gluten which can end up with me in emergency. So - I personally need to know when, where, how and if there is any risk of contamination at all I need to know. But generally people are very lackluster and they just don't get it! Just because the majority are not super sensitive does not mean it doesn't exist. Read up my gluten symptoms and you will only find them in pubmed and medical studies - it is not something even listed in celiac symptoms anywhere - doesn't mean it doesn't happen :)

And interesting that someone mentioned peanuts.. You are not allowed any peanut products at any school here - you are also not allowed to have peanut butter before attending some schools. Some parents get really agro about it - but hey - its a bloody peanut - who the heck cares? Its not about banning gluten - but how hard is it for a GLUTEN FREE company to be gluten free - not hard at all. You can't have it both ways. Seriously how bleeding hard is it to process your foods on different lines. Have a gluten free one and a non gluten free if you insist.

Anyone else notice that Macro who does a huge gluten free range processes their quiona and polenta on gluten lines - why do it for - the two things that celiacs would eat most!! Why not process them on the gluten free lines that they obviously have for all their gluten free stuff?? It is bizarre.

Or they could be like Freedom foods and have a completely gluten free factory...


Actually it's very hard to justify creating special gluten-free lines for somethings. It costs the company much more money to produce a product that in a completely gluten-free than it does to produce a product that is gluten-free but is made in the same factory/same lines as products containing gluten. In order to produce their gluten-free food in a different factory it means they need; a two facilities, two sets of employees, two sets of machines, two electric bills, twice the shipping trucks.... For some companies they would not be able to sell enough of the gluten-free items to cover the costs of production. Especially, if they do not raise prices. Think about it, Lay's can't exactly charge more for the bag of one flavor potato chips than the rest. People would be outraged. The other problem is verifying that your suppliers are actually producing a product that is gluten-free. That also costs more money.
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#53 MJ_S

 
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Posted 28 September 2011 - 06:28 PM

Anyone else notice that Macro who does a huge gluten free range processes their quiona and polenta on gluten lines - why do it for - the two things that celiacs would eat most!! Why not process them on the gluten free lines that they obviously have for all their gluten free stuff?? It is bizarre.


To clarify, you're not referring to GoMacro that makes gluten free bars, are you? As far as I know, they ONLY make gluten free bars. Not sure what Macro is - I couldn't find their products or website when I searched for it.
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#54 mushroom

 
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Posted 28 September 2011 - 06:38 PM

Macro is a product line packaged for Woolworths Australia. See www.woolworths.au
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#55 weluvgators

 
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Posted 28 September 2011 - 08:39 PM

Many celiacs, perhaps you and your father included, don't take the time to explore all other food intolerance possibilities. I suspect that many people who believe that they are super sensitive celiacs and getting cross-contamination actually have additional undiscovered food intolerance, for example to soy, corn, casein, tomatoes, eggs, etc. It is very difficult to return to health if you are in this category and are still eating something that is offending to your system. I do no mean to try to diagnose you here, but I offer a possibility that many super sensitive people don't often consider. It can be extremely difficult and time consuming to find all intolerance issues, but, for many people, doing so is the only way to recover.


I am surprised to see such a generalization about many celiacs. Most of the celiacs that I know have gone to great lengths to understand many factors involved in their recovery. Our family is practiced in medically supervised elimination/challenge diets, and we have eliminated more than just gluten. We are also dairy free, amongst other things. And you know one of the grave mistakes I made at the onset of going gluten free? Drinking “processed food” milk alternatives – ones labeled “gluten free” – without adequately determining the safety of that product (which required the ability to test my foods at home, as the company said all of the “right” things in my phone calls to them). I found that consuming processed by other milk alternatives contaminated with gluten was a great way to get regular doses that delayed my healing. I still don’t fully understand why products made primarily of water test positive for gluten. Yet the ones we were drinking were positive for gluten, and we were struggling with symptoms from it because that was when it was very difficult for me to find information about the limitations of “gluten free” processed food consumption. That was not an easy thing for me to understand without seeing the results of my food testing and subsequent food eliminations.

And I think that many people here, especially those that are super sensitive, are working closely with their doctors to gain better management of their condition(s). And it isn’t all about other intolerances either, as I know that my family has gone to great lengths to review many other things that were possibly slowing our healing. We have found that investigating complications of a celiac diagnosis take time, and new complications/relief may arise as living conditions change. And I feel that the best thing to be done, especially for newly diagnosed celiacs and celiacs investigating possible complications, is to provide food that is reliably and ideally truly gluten free. I know that for our family, figuring out those “gluten free” foods could not be substituted into the lives that we had before (that was how it has often been portrayed to me by both doctors and support groups) was incredibly instrumental in us gaining healing – no other treatment that we have tried has worked anywhere near what that recognition did for us.
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My super silly red siren is my guiding light. She has been a tremendous lesson for me in how gluten affects different people in very different ways. She is a super duper silly girl that was simply born that way. I have no idea why I am so blessed to have her guidance.

#56 beebs

 
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Posted 29 September 2011 - 01:32 AM

Actually it's very hard to justify creating special gluten-free lines for somethings. It costs the company much more money to produce a product that in a completely gluten-free than it does to produce a product that is gluten-free but is made in the same factory/same lines as products containing gluten. In order to produce their gluten-free food in a different factory it means they need; a two facilities, two sets of employees, two sets of machines, two electric bills, twice the shipping trucks.... For some companies they would not be able to sell enough of the gluten-free items to cover the costs of production. Especially, if they do not raise prices. Think about it, Lay's can't exactly charge more for the bag of one flavor potato chips than the rest. People would be outraged. The other problem is verifying that your suppliers are actually producing a product that is gluten-free. That also costs more money.



Well - that was kind of my point..what I meant was - either be gluten free - or don't, don't try and have it both ways. I am willing to pay extra for gluten free products....as someone else pointed out here in Australia it is only considered gluten free if it is 3ppm or less. And that is fine for me. Expensive maybe - but we just eat heaps of rice and potatoes so its not really that different!
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#57 admin

 
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Posted 29 September 2011 - 11:12 AM

Or they could be like Freedom foods and have a completely gluten free factory...



I hate to be the one to tell you this but as far as I know there is no "gluten-free factory" in existence. Contamination can happen anywhere in the supply chain, including but not limited to the field where the gains are grown, during transportation, at the mill when they are ground into flour (very common), etc., and many so called gluten-free facilities are therefore no better than their counterparts who take steps and clean lines and machinery. The only way to decide if something is gluten-free is to batch test it at the end. I am not aware of any company anywhere that grows their own grains and grows or makes all of their own ingredients they use, and does all the processing on them. They would also have to restrict employees from bringing gluten to the workplace. In my opinion that is what it would take to make the claim that their facility is 100% gluten-free.

Also, for those who are super sensitive and have explored all of their other food intolerance issues, and have made sure their diet is 100% gluten-free, I have some bad news: You could be in the refractory sprue category, which is a whole different issue and requires additional medical treatment. For people in this category the proposed 20ppm regulations will be better than what we have now, but in reality only additional and more aggressive medical treatment is likely to improve their condition. Here is more info on that:
http://www.celiac.co...lagenous-Sprue/

Take care,
Scott
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#58 GlutenFreeManna

 
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Posted 29 September 2011 - 11:34 AM

Also, for those who are super sensitive and have explored all of their other food intolerance issues, and have made sure their diet is 100% gluten-free, I have some bad news: You could be in the refractory sprue category, which is a whole different issue and requires additional medical treatment. For people in this category the proposed 20ppm regulations will be better than what we have now, but in reality only additional and more aggressive medical treatment is likely to improve their condition. Here is more info on that:
http://www.celiac.co...lagenous-Sprue/

Take care,
Scott


I'm a little bit shocked at this suggestion coming from admin of this board. Are you really saying that those of us that have found we only heal when eating LESS than the "reccomended" 20 PPM gluten should abandon the super-strict gluten-free diet approach that WORKS for us and go on dangerous side-effect producing drugs for refractory sprue? Or am I misunderstanding? Because from what I have always understood about refractory sprue--if eliminating gluten-free processed products works then the person is not a real case of refractory sprue.
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#59 kareng

 
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Posted 29 September 2011 - 11:51 AM

I'm a little bit shocked at this suggestion coming from admin of this board. Are you really saying that those of us that have found we only heal when eating LESS than the "reccomended" 20 PPM gluten should abandon the super-strict gluten-free diet approach that WORKS for us and go on dangerous side-effect producing drugs for refractory sprue? Or am I misunderstanding? Because from what I have always understood about refractory sprue--if eliminating gluten-free processed products works then the person is not a real case of refractory sprue.



I think he is saying that if the "Super strict diet" doesn't work. If eliminating processed gluten-free stuff works, great!
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#60 GlutenFreeManna

 
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Posted 29 September 2011 - 12:04 PM

I think he is saying that if the "Super strict diet" doesn't work. If eliminating processed gluten-free stuff works, great!


I hope that is what he means. Thanks.
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