In Defense Of 20 Parts Per Million

[Scott Adams]

Ok, but just so we understand each other, when something can't go over 20 ppm it doesn't mean that it will automatically contain 19 ppm, or even more than 10 ppm. In fact, it is my experience that most companies that have "gluten-free" on their labels right now are testing under 10 ppm or even 5 ppm, and this is without any formal regulation in place. After the regulation is in place I would think that compliance and lower levels would only improve. Basically I think it is important to look at a level like 20 ppm not as a level that manufacturers are trying to get as close to as possible without going over, but more as a level that covers them in case there is a single batch that tests a bit higher, perhaps through no fault of their own (for example maybe their rice flour ingredient supplier had an issue), and they would not fall victim to a massive product recall or lawsuit.

Remember, most gluten-free companies, including my own, are still very small businesses just trying to get by.

Take care,

Scott

[T.H.]

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.

That seems to be the case in Australia, from what I understand. The gluten free product lists get smaller when the ppm gets lower.

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?

I actually wonder if there's a bit of miscommunication on this point, sometimes. Most people I know who are frustrated with a 20 ppm gluten free standard aren't proposing that we could make a 'zero' gluten product label work. We just believe that labeling something gluten 'free,' when it is not, is setting up our population for ill-health due to an easily avoidable misconception.

'low gluten' would be more honest, and the difference between a label of 'free' and 'low' is noticeable when it comes to how people treat a food. Just look at how people consume low calorie soda vs. zero calorie soda. If celiacs are informed that their food is 'completely' safe and free from all gluten, then they will treat it as though it is, and a gluten 'free' label implies that. It really implies it when countries not only have a gluten free label, but a low gluten one as well. What is a person buying the product to think except that one product contains no gluten?

The experts most people are relying on - their doctors and nutritionists - are often using the exact same term, as well, and it can be months, or even years, before some of us find out that gluten free is a legal label, not a statement of fact.

This is an issue for regular celiacs as much as super-sensitives. The amount of food most teenage boys I know eat would put many of them over an average safe gluten threshold, if they were eating 20 ppm products. If they were aware that more consumption = more gluten, they would be more likely to search out fruits, veggies, and meats instead of processed products.

Another potential issue - although this isn't the FDA's concern at all, I know - is medication. The regulations for medications are different than food, but what happens when the time comes that we can get legislation passed to regulate gluten free labels on meds? It's likely to match whatever the FDA has.

With food, super-sensitives can choose to eat whole foods. Regular celiacs can watch how much gluten they're getting from their gluten-free foods. But with meds? That's a different story. Super-sensitives are just plain out of luck, period. Even regular celiacs who need numerous medications could potentially have trouble.

Acknowledging on the labels that there IS a difference between gluten free and low gluten, factually, is a step in the direction that keeps us all safe, IMO. It's not impossible to test for and it leads to a better understanding about our diets and the safety and risks. This would help not only celiacs, but their doctors and nutritionists, too.

[T.H.]

I think it is important to look at a level like 20 ppm not as a level that manufacturers are trying to get as close to as possible without going over, but more as a level that covers them in case there is a single batch that tests a bit higher, perhaps through no fault of their own (for example maybe their rice flour ingredient supplier had an issue), and they would not fall victim to a massive product recall or lawsuit."

I can appreciate that point of view, honestly. I've spoke with a few gluten-free business owners, and I do appreciate the financial limits for this. Testing every batch vs. quarterly, for example, is often a matter of cost rather than preference, for a smaller business. I'd rather see a 10 ppm standard, honestly, since that seems doable these days, if a bit more of a financial burden, but I can see your point.

But at the same time? I'd ask one question: who is this legislation for, the businesses or the celiacs? A single batch testing higher can cause a financial burden for a company, definitely. It can also cause a physical burden for the celiac who just ate it.

As someone who does not have a gluten-free business and who does have family members with celiac disease, I'll be honest in saying that I fall more on the side of the celiacs than the businesses. I know that not everyone feels the same way, but that's where I'm at, for the the moment.

[Scott Adams]

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.

Take care,

Scott

[kareng]

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. You mention plain fruits, veggies, meat, grains as all having gluten in them that bothers you. These are not the foods that would be tested & declared gluten-free. 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.

In the States, we have no law for the meaning of gluten-free. If the law is 20 ppm or 5 ppm or 700 ppm, at least we will know where we stand with a manufactured product. Smart companies will advertise that they test to 5 ppm or 10 ppm and have a gluten-free facility. The legislators that are working on & will have to vote on this proposed law, don't really care. This doesn't effect most of thier lives or a large population that elects them. I would hate to see them just decide to table it (as seems to have happened in the past).

Medications aren't part of this law but I wish that the drug companies would list ingredients in an understandable way on the packages - salt not sodium chloride, for example.

[Jestgar]

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.

[Lisa]

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

[GlutenFreeManna]

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.

[Scott Adams]

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

[GlutenFreeManna]

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".

[Scott Adams]

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

[come dance with me]

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

[T.H.]

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.

[kareng]

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.

[T.H.]

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. :-)

[beebs]

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

[T.H.]

... 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.

[come dance with me]

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.

[beebs]

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!!

[mbrookes]

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.

[auzzi]

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..

[weluvgators]

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.

[Scott Adams]

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

[T.H.]

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.

[Scott Adams]

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

Take care,

Scott