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.
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:
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.
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.
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.
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.
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.
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/
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.
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.
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.
We currently have no regulation in the USA for use of the term gluten-free on labels, and the one that is about to be passed took ten years or more of work to reach the stage it's at--and the proposed regulation does not include the term "low gluten." It is a red herring for you to try to discuss the current labeling regulation and say that it ought to say "low gluten" instead--again, it doesn't so why go there? 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).
As you mentioned, there isn't testing for gluten that goes down to zero, so by your standards how can anything be called "gluten-free?" 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, and a level that is acceptable by the majority of the food industry.
The problem with a lower level, say 5ppm, is that many companies will no longer put "gluten-free" on their labels due to the vastly increased liability factor, and the huge expense of trying to maintain such levels in all batches. While the idea of being more strict sounds like it would make you more safe--this might not actually be the case. More strict could mean less choice and more cost.
I am aware of at least one manufacturer who have already removed "gluten-free" from their labels due to the new 5ppm Canadian laws. Their products haven't changed a bit, and are still gluten-free according to the 20ppm standard and they regularly test below 5ppm, however, they occasionally get a batch that is slightly above 5ppm. Such a test would, under current Canadian standards, set of a nationwide recall of their products, the cost of which could put them out of business.
Additionally, it is my understanding (correct me if I am wrong here), that Schar products are not available in Canada. I have heard that if you contact them they will tell you it is because they don't have French/English labels, however, I suspect that the 5ppm regulation might be the real culprit.
In any case, the "zero tolerance" position expressed by some on this board and in the celiac community would actually backfire and create less choices, and more expensive products. Additionally I doubt the super-sensitive folks would eat them anyway, as they could contain up to 5ppm...right?
Group hopes to raise gluten-free awareness Vernal Express
The Walkers have both been diagnosed with celiac disease. Five of Flossie Walker's seven children also have the genetic disorder. Walker had taken her eldest daughter to about 20 different doctors before the girl was diagnosed at age 6. ...
Please look at that list again, and you will see that there is a footnote, and that it is under the section: "The following items may or may not contain gluten depending on where and how they are made, and it is sometimes necessary to check with the manufacturer to find out:"
Celiac Awareness Day Celiac.com (blog) Celiac awareness day! Why is it so important to have such a day? Because without awareness we have no voice, we will never have a cure, we will constantly suffer from mislabeled foods, accidental gluten intake, and cross contamination. ...
Alternative goodies: Local couple opens gluten-free, dairy-free bakery Star Community Newspapers
Medley also said they felt the need for the business because more people are starting "to get diagnosed with either an intolerance or celiac disease." Medley said his wife's father was diagnosed with Celiac Disease and their oldest son has also been ...