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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

In Defense Of 20 Parts Per Million
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70 posts in this topic

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

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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

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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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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.com/categories/Celiac-Disease-Research%3A-Associated-Diseases-and-Disorders/Refractory-Celiac-Disease-%26-Collagenous-Sprue/

Take care,

Scott

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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.com/categories/Celiac-Disease-Research%3A-Associated-Diseases-and-Disorders/Refractory-Celiac-Disease-%26-Collagenous-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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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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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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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 certainly cannot speak for Scott but I understood his response to be that if you are having that much trouble healing, it would be prudent to look into refractory sprue as a possible culprit.

The vast majority of Celiacs do well on a gluten-free diet, which will include some processed gluten-free food. I did, yet it was still 3 years before all of my symptoms went away. That's pretty common and at no time did I think that my food was so contaminated, I was not healing. I still think the whole premise that mainstream gluten-free food is so contaminated, if you eat processed food, you are constantly ingesting gluten, is nonsense. I fully accept it does happen from time to time but most Celiacs would not attain good health if it were. Even if you don't react, damage can still be occurring and the only way to verify that is whether you get better or not. Problem is, there is no way to verify that, testing wise, without food costing even more than it does. I think the system we have now is pretty good but it will take time to learn the ropes of what you can and cannot tolerate. I would also venture to guess that most companies who are serious about selling gluten-free food are not selling food that comes close to the 20ppm that is currently being proposed. If they were, many more Celiacs would still be sick and not buying the food, which could put some companies out of business.

It is not difficult to be a Celiac in the US, once you learn the diet. I think we have it pretty good with all the choice we currently have. No one coming here should fear getting sick off of our food. Some of you are giving the impression that you cannot trust gluten-free food produced here and it's contaminated. Horse pucky.

I think Scott offered some valid points on why some stay sick longer than others. These are things I thought of and would have looked into had I not recovered well.

If you are that sensitive and have more than one intolerance, your needs aren't going to be met as well as you'd like. That's life. My dairy intolerance ain't going away and I can no longer eat ice cream....the kind at the stand that everyone else eats....the really yummy ice cream. It blows but I am over it.

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

That's what I understood. If you have truly eliminated gluten, and ruled out other intolerances, but are still experiencing symptoms/reactions, then you should consider the possibility of refractory sprue.

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That's what I understood. If you have truly eliminated gluten, and ruled out other intolerances, but are still experiencing symptoms/reactions, then you should consider the possibility of refractory sprue.

That makes perfect sense. I guess I did not take that to be what he was saying since his response came after weluvgators who had said this: "I know that for our family, figuring out those

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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?

I'm not sure how you got this from my post, but no, if any diet is working for anyone, whether super sensitive or not, by all means stick with it. To clarify, there seems to be a few categories of celiac/gluten sensitive people:

  1. Majority 1 = Less than 20 PPM works fine, and they can also eat Codex quality wheat start products (as many celiac in Europe do) without issues. A standard gluten-free diet clears up most issues. Very small amounts of cross contamination are not noticeable.
  2. Majority 2 = Majority 1 + they have additional food intolerance but simple elimination works and even small amounts of the other offending items aren't noticeable.
  3. Super Sensitive 1 = Those who do not improve on a gluten-free diet, perhaps due to contamination issues. Once they eliminate all gluten by not eating out, making their own food, not eating processed foods, etc., they improve and get better.
  4. Super Sensitive 2 = Everything in Super Sensitive 1 + they have additional food intolerances, and once they find them and eliminate other offending items they improve and get better.
  5. Super Sensitive 3 = They could be Super Sensitive 1 or Super Sensitive 2 but they do not improve no matter what they do.

It is the last "Super Sensitive 3" group that must consider other issues like refractory sprue, unlcerative colitis, etc., as no diet changes seem to help.

Take care,

Scott

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I'm not sure how you got this from my post, but no, if any diet is working for anyone, whether super sensitive or not, by all means stick with it. To clarify, there seems to be a few categories of celiac/gluten sensitive people:

  1. Majority 1 = Less than 20 PPM works fine, and they can also eat Codex quality wheat start products (as many celiac in Europe do) without issues. A standard gluten-free diet clears up most issues. Very small amounts of cross contamination are not noticeable.
  2. Majority 2 = Majority 1 + they have additional food intolerance but simple elimination works and even small amounts of the other offending items aren't noticeable.
  3. Super Sensitive 1 = Those who do not improve on a gluten-free diet, perhaps due to contamination issues. Once they eliminate all gluten by not eating out, making their own food, not eating processed foods, etc., they improve and get better.
  4. Super Sensitive 2 = Everything in Super Sensitive 1 + they have additional food intolerances, and once they find them and eliminate other offending items they improve and get better.
  5. Super Sensitive 3 = They could be Super Sensitive 1 or Super Sensitive 2 but they do not improve no matter what they do.

It is the last "Super Sensitive 3" group that must consider other issues like refractory sprue, unlcerative colitis, etc., as no diet changes seem to help.

Take care,

Scott

I see. Thank you for making it clearer. I have never considered the last group to be super sensitive celiacs, but rather to have a different condition (i.e. refractory celiac). So when you suggested super sensitives look for other causes that is when I was confused because in my mind super sensitives improve once they figure out what is bothering them.

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One other thing that many people may not consider is sugar (not just refined sugar). There is a ton of research that shows many celiacs have diabetes and vice versa, but for many celiacs eating sugar can cause all sorts of gastro issues like candida overgrowth, etc., but this is really a topic for the Other Intolerances forum. Elimination diets should exclude all forums of sugar, and I do not often hear that mentioned in the super sensitive topics.

Take care,

Scott

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

Oh, wow, I just reread my post re: the law...I could not have been more confusing in my language if I tried to do it on purpose. Ouch - sorry 'bout that!

So, to answer the question: yes, I have actually read the 20 ppm regulation.

When I was talking about not being completely familiar with 'the law' I should have said: I am not completely familiar with what is required, legally speaking, to put into place and/or to alter existing regulations.

Considering I referred to the 20 ppm regulation AND the full concept of 'how the law works in terms of passing and altering regulations' in the same sentence - and referred to both of them AS 'the law' in that same sentence- seriously, I am amazed that you were able to get anything coherent out of that at all, LOL. Holy crud. I should sign up to work for corrupt politicians who need incomprehensible answers to tough questions. ;)

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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.com/categories/Celiac-Disease-Research%3A-Associated-Diseases-and-Disorders/Refractory-Celiac-Disease-%26-Collagenous-Sprue/

Take care,

Scott

This is taken from freedom foods website

"We

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I support the 20 PPM level labeling. It is a good start on regulating the labeling of our foods. I don't expect to eat a lot of items labeled gluten-free under the rule, because I don't find many processed foods that fit my diet restrictions. But at least it is a common denominator for food labeling that companies can look to for planning their processes. It seems like a positive step forward to me.

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For me, the issue with the recommendation to eat "whole foods" as a way to avoid labelling issues, is that even a whole foods diet usually requires some products that may or may not contain gluten, depending on manufacturing processes.

Short of growing your own rice, quinoa, legumes, etc., you're probably going to be buying some processed foods at the store.

Rigorous gluten-free labelling isn't only about having access to highly processed foods, it's also about knowing that the grains and seasonings that you eat are gluten-free.

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