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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 Celiac.com's FREE weekly eNewsletter   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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Labeled gluten-free But Really Not
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I was dx with celiac disease about 8 months ago. I started a strict gluten-free diet and within a month started to feel much better. Recently I had a relapse of symptoms only to finally discover that the Rice Milk I was consumming, for the about a month, was processed using Barley. This Rice Milk was labeled gluten-free so I did not think to ck it when trying to figure out what was causing my recurrance of symtoms. Apparently, I am a supersensitive Celiac and I am now terrifed of these "gluten-free" products. I understand that gluten-free means less than 20ppm but no gluten is safe. Does anyone know of any other "gluten-free" products that are potentially dangerous? Thanks!

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Oh so sorry you got sick on that!

I'm assuming you live in the USA, yes? One of the major issues here is that there is not yet regulation of gluten-free foods, so which ingredients can be used, and how often a product must be tested, if at all, are not standardized.

Another issue is that one of the tests to determine the concentration level of gluten, which some companies use, does a poor job of accurately detecting the barley gluten, specifically, so foods that have utilized barley or have barley derivatives may actually have above the 20 ppm of gluten that most companies aim for, due to the barley.

Re: the rice milk. The good news is, you may actually not be super-sensitive, although if you were having trouble with it, you likely do fall on the sensitive side. :) There are a number of celiacs who have had trouble with a rice milk that was processed with barley. A number of celiacs have also reported issues with Amy's products. And due to the lack of regulation in the USA at the moment, it's not unheard of to get other 'gluten free' foods that have over 20 ppm of gluten, or a few batches that are over 20 ppm, because the company isn't testing their product.

For this reason, a number of celiacs drop processed food for a the first few weeks-months of healing. They eat whole meat (not luncheon meats), fruits, and veggies. Sticking to certified gluten free grains like Lundberg rice. Avoiding nuts, dried fruits, and legumes that have been processed in a facility with wheat. We were just talking about sunmaid raisins here a few days ago, for example, and they seem to have a dedicated facility for just raisins. Then they slowly add back in a product, one every few days, or once a week, and see how they are feeling on it.

When we were in the same position as you are, I went to whole foods, and for my kids we ended up hunting down products that had stricter testing standards and lower gluten concentration standards.

These guys (http://www.gfco.org/ ) will certify products, and not only are the foods with this symbol on the box supposed to have less than 10 ppm of gluten, their processing, ingredient sourcing, and cross contamination prevention practices have all had to meet certain standards. They also do not allow derivatives of wheat, rye, regular oats, or barley to be used as ingredients or in the production of the food.

The website above also has a list of all companies that are certified by them, so you can more easily find them. :-)

CSA ( http://www.csaceliacs.info/index.jsp ) also certifies products and they will have the seal on their product. The products with this certification must be below 5 ppm, and there are certain standards and testing protocols they must follow as well. However, CSA certified products are not allow to use any oats, even gluten-free ones.

For both of these, the last time I checked, the testing isn't for every batch, but the frequency is based on the estimated safety of their sourcing and processing practices.

Another Two companies that have lower ppm standards, but aren't certified, are Pamela's brand mixes and cookies (every batch tested, must be below 5 ppm) and Ener-G (periodic testing, must be below 5 ppm).

If you see a gluten free product that is labeled as such, it's possible to find out if they test, but kind of a pain in the behind, so going with certified products can be easier at first (if more expensive). If you wish to contact companies yourself to determine which ones test, here's the questions I ask through email or a phone conversation.

1. Is your product gluten free? Sometimes, the answer to this is 'not any longer,' so it's worth checking, just in case.

2. Is your product made in a gluten free facility or gluten free line? This is not required for safe products for many celiacs, but it does let you at least estimate the level of risk, especially if a product is not being tested.

3. Is your product tested for gluten levels? If so, how frequently? And what is the allowed ppm level of gluten in your product? (or what is the ppm detection level of the tests used?)

The last question is one that I would get ALL the information on. It's been surprising how many company reps tell me that they test for gluten, but when they go to check on what ppm is allowed, find out that they don't test after all. :rolleyes: So the last question is, in some ways, really just a check to make sure they knew what they were talking about.

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I was dx with celiac disease about 8 months ago. I started a strict gluten-free diet and within a month started to feel much better. Recently I had a relapse of symptoms only to finally discover that the Rice Milk I was consumming, for the about a month, was processed using Barley. This Rice Milk was labeled gluten-free so I did not think to ck it when trying to figure out what was causing my recurrance of symtoms. Apparently, I am a supersensitive Celiac and I am now terrifed of these "gluten-free" products. I understand that gluten-free means less than 20ppm but no gluten is safe. Does anyone know of any other "gluten-free" products that are potentially dangerous? Thanks!

Any product that contains barley will cause a reaction in any Celiac...except for those who are asymptomatic in general. It would be the equivalent of ingesting wheat. We all have made these mistakes in the beginning and it's part of the learning process. However, try not to become terrified of food because there are many gluten-free products which are gluten-free and will not cause you to become sick. I generally do not eat from shared facilities, unless their cleaning practices are solid. Amy's has presented problems for me so I cannot eat their products...many Celiacs have had a problem with Amy's.

You can safely eat certified gluten-free products and many which are not certified but follow good practices for preventing cc. It's a learning process and you'll get to know over time what you can and cannot tolerate. But do not be afraid to try stuff or your diet will become extremely limited. Those are the unhappy Celiacs. Why limit your diet when you may not have to? Most of what is out there is safe for the vast majority of Celiacs. Also keep in mind that a reaction may not always be gluten related.

If you are looking for a good gluten-free bread, Canyon bread is certified and very, very good. Google the name and get the details if you want more information. I am pretty sensitive and tolerate this bread well. Hang in there...it gets much easier the longer you are gluten-free!

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I have seen several items that say gluten-free on the label but then say processed on equipment that makes things containing wheat. I can't remember the brands though. We have learned to read the entire label.

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I was dx with celiac disease about 8 months ago. I started a strict gluten-free diet and within a month started to feel much better. Recently I had a relapse of symptoms only to finally discover that the Rice Milk I was consumming, for the about a month, was processed using Barley. This Rice Milk was labeled gluten-free so I did not think to ck it when trying to figure out what was causing my recurrance of symtoms. Apparently, I am a supersensitive Celiac and I am now terrifed of these "gluten-free" products. I understand that gluten-free means less than 20ppm but no gluten is safe. Does anyone know of any other "gluten-free" products that are potentially dangerous? Thanks!

As you read through this section you will find lots of references to product names that should help. You will also find the sources of where gluten "hides", like maltodextrin. Some processing plants use wheat flour on their conveyor belts and don't have to list it in the ingredients. Chips and candy (chocolate) fall in this category. By reading, you'll find the brands people tolerate.

I have quit eating most gluten free brands because I can not afford to be so ill by doing lots of experimenting.

I have realized lately that even if a company is trying to be gluten free, they might not be getting gluten free raw ingredients. There was an article in Cornucopia that told about a Canadian milling company that just lost its organic status. The person who told me about it has a gluten free bakery whose products I react to. See: http://www.cornucopi...ency/#more-4348

In a July 27, 2011 notice, the office said Jirah Milling and Sales Inc., of Ormstown, was no longer authorized to market organic products or use the Canada Organic logo (the logo that would now be recognized by the U.S. and the EU).

In another Texas case:

Last year, a Texas businessman, Basilio Coronado, was convicted of fraudulently selling conventional grains and beans as organic produce. He was sentenced to 24 months in prison and ordered to pay almost $524,000 in restitution.

With people like this in the industry there are going to be mistakes made and gluten included.

I have learned how to make raw desserts out of the most delicious ingredients... no flours needed. I bought the Cafe Gratitude cook book and their dessert cook book. The coconut cream pie is to die for! You'll never miss the other desserts once you try their recipes.

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This one incident does not necessarily mean you are super sensitive.

richard

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As you read through this section you will find lots of references to product names that should help. You will also find the sources of where gluten "hides", like maltodextrin. Some processing plants use wheat flour on their conveyor belts and don't have to list it in the ingredients. Chips and candy (chocolate) fall in this category. By reading, you'll find the brands people tolerate.

Maltodextrin is not a gluten concern in the US and Canada. And wheat flour on conveyor belts is an exaggerated non-necessary concern.

There is plenty items of concern out there, but these two are not. :)

Your best source of information is to contact the company directly, and with hopes, you will find an informed customer relations representative.

There is a listing on reliable companies who will clearly list all forms of gluten...must go find. :)

I don't believe that companies are out there to mess with us. After six years, I have seen tremendous success in product offerings. I'm happy. You just need to be an informed consumer. Hidden gluten doesn't hide as well as it did several years ago. That's a good thing.

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Some processing plants use wheat flour on their conveyor belts and don't have to list it in the ingredients.

Please name one. Just one--and provide the evidence supporting the allegation. I have been on the diet for over eleven years, and have yet to learn of a single case where this is actually true.

Oh, and don't confuse organic with gluten-free. They really have very little in common.

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I just wanted to point out that Padma didn't say that a product didn't have to list wheat on the label, just that the wheat didn't have to be listed as an ingredient. I'd assume a product with wheat used in production would need a 'contains wheat' statement on the label near the ingredient list.

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Oh so sorry you got sick on that!

I'm assuming you live in the USA, yes? One of the major issues here is that there is not yet regulation of gluten-free foods, so which ingredients can be used, and how often a product must be tested, if at all, are not standardized.

Another issue is that one of the tests to determine the concentration level of gluten, which some companies use, does a poor job of accurately detecting the barley gluten, specifically, so foods that have utilized barley or have barley derivatives may actually have above the 20 ppm of gluten that most companies aim for, due to the barley.

Re: the rice milk. The good news is, you may actually not be super-sensitive, although if you were having trouble with it, you likely do fall on the sensitive side. :) There are a number of celiacs who have had trouble with a rice milk that was processed with barley. A number of celiacs have also reported issues with Amy's products. And due to the lack of regulation in the USA at the moment, it's not unheard of to get other 'gluten free' foods that have over 20 ppm of gluten, or a few batches that are over 20 ppm, because the company isn't testing their product.

For this reason, a number of celiacs drop processed food for a the first few weeks-months of healing. They eat whole meat (not luncheon meats), fruits, and veggies. Sticking to certified gluten free grains like Lundberg rice. Avoiding nuts, dried fruits, and legumes that have been processed in a facility with wheat. We were just talking about sunmaid raisins here a few days ago, for example, and they seem to have a dedicated facility for just raisins. Then they slowly add back in a product, one every few days, or once a week, and see how they are feeling on it.

When we were in the same position as you are, I went to whole foods, and for my kids we ended up hunting down products that had stricter testing standards and lower gluten concentration standards.

These guys (http://www.gfco.org/ ) will certify products, and not only are the foods with this symbol on the box supposed to have less than 10 ppm of gluten, their processing, ingredient sourcing, and cross contamination prevention practices have all had to meet certain standards. They also do not allow derivatives of wheat, rye, regular oats, or barley to be used as ingredients or in the production of the food.

The website above also has a list of all companies that are certified by them, so you can more easily find them. :-)

CSA ( http://www.csaceliacs.info/index.jsp ) also certifies products and they will have the seal on their product. The products with this certification must be below 5 ppm, and there are certain standards and testing protocols they must follow as well. However, CSA certified products are not allow to use any oats, even gluten-free ones.

For both of these, the last time I checked, the testing isn't for every batch, but the frequency is based on the estimated safety of their sourcing and processing practices.

Another Two companies that have lower ppm standards, but aren't certified, are Pamela's brand mixes and cookies (every batch tested, must be below 5 ppm) and Ener-G (periodic testing, must be below 5 ppm).

If you see a gluten free product that is labeled as such, it's possible to find out if they test, but kind of a pain in the behind, so going with certified products can be easier at first (if more expensive). If you wish to contact companies yourself to determine which ones test, here's the questions I ask through email or a phone conversation.

1. Is your product gluten free? Sometimes, the answer to this is 'not any longer,' so it's worth checking, just in case.

2. Is your product made in a gluten free facility or gluten free line? This is not required for safe products for many celiacs, but it does let you at least estimate the level of risk, especially if a product is not being tested.

3. Is your product tested for gluten levels? If so, how frequently? And what is the allowed ppm level of gluten in your product? (or what is the ppm detection level of the tests used?)

The last question is one that I would get ALL the information on. It's been surprising how many company reps tell me that they test for gluten, but when they go to check on what ppm is allowed, find out that they don't test after all. :rolleyes: So the last question is, in some ways, really just a check to make sure they knew what they were talking about.

Thank you so much for taking the time to explain so much to me! Yes, I do live in the US. Love the links and you have opened my eyes to the testing world and how to find safer products!

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I just wanted to point out that Padma didn't say that a product didn't have to list wheat flour on the label, just that the wheat didn't have to be listed as an ingredient. I'd assume a product with wheat used in production would need a 'contains wheat' statement on the label near the ingredient list.

So, Shauna, I take it that you have a verifiable example of wheat on a conveyor belt that is not listed in the ingredients. Please share it with us, by name, and include the evidence.

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whoops, missed that there was more on this thread!

So, Shauna, I take it that you have a verifiable example of wheat on a conveyor belt that is not listed in the ingredients. Please share it with us, by name, and include the evidence.

Actually, I wasn't trying to address that issue specifically. I was simply pointing out that wheat used during production would not necessarily have to be on an ingredient list, even though it should be on the label in a 'contains wheat' statement.

I honestly can't recall if I've ever found any companies that have used wheat on a conveyor belt specifically for a product on that belt (as opposed to shared lines with another product). None come to mind. Cornstarch is what I've usually found being used, if needed. It'd be an interesting project to do some calls to check out if that is pretty universal for products here in the States, though, so I'll likely do that and put what I find up here.

Most uses of wheat flour in molds that I've run across have been chips that were made in-house in restaurants.

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Most uses of wheat flour in molds that I've run across have been chips that were made in-house in restaurants.

I don't understand what you are saying. Would you please explain?

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I don't understand what you are saying. Would you please explain?

Sure, no problem. There are a lot of mexican restaurants where I am and some of them make their own corn tortillas and/or corn tortilla chips from scratch in the restaurant as a selling point, rather than purchasing them pre-made. I remember a couple of them using the term 'in-house' to describe where these products were made: in the restaurant rather than out of the restaurant.

For some of these, we've been told that they used either wheat flour in the mold for the corn tortillas or wheat flour was used during part of the process to make the chips, frequently to coat the roller that was being used to roll out the chips.

The ones that didn't use wheat flour tended to use corn starch or more dry corn meal or corn masa.

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Sure, no problem. There are a lot of mexican restaurants where I am and some of them make their own corn tortillas and/or corn tortilla chips from scratch in the restaurant as a selling point, rather than purchasing them pre-made. I remember a couple of them using the term 'in-house' to describe where these products were made: in the restaurant rather than out of the restaurant.

For some of these, we've been told that they used either wheat flour in the mold for the corn tortillas or wheat flour was used during part of the process to make the chips, frequently to coat the roller that was being used to roll out the chips.

The ones that didn't use wheat flour tended to use corn starch or more dry corn meal or corn masa.

Yeah..that's probably no surprise. But, I am certain that there are plenty of Mexican Restaurants who use dedicated fryers to cook only corn chips. You should inquire at each restaurant.

I carry Triumph's Dining Cards with me when I attend an ethnic restaurant. It helps with the language barrier, but as in any restaurant, it's no guarantee. I always accept the risk when I choose to eat out, make the best choices I can but can't really blame the restaurant if I get glutened.

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do you mean Rice Dream brand of rice milk? I've stopped drinking that stuff, too, because of the CC issues with barley.

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Hi, could someone provide a reputable link for why this is so?

Maltodextrin is not a gluten concern in the US and Canada.

I know my food allergies/intolerances and have been tested for all the other stuff---lyme, thyroid, ad nauseum. And earlier this year, unexpectedly, I had a gluten reaction to plain aspirin where I don't react to it in other medications. There were no other changes in my diet or personal products at the time so the culprit could only have been the aspirin. The only suspect ingredient when I went back and checked after reacting was the maltodextrin. Maltodextrin isn't in the products that I usually use that give me no trouble. It's possible that perhaps the product was made in China like so many things in the store it was from, I guess. Or it was made in a facility that also processes things with WBR. I don't think I have the bottle anymore to check for sure though---I do know there was no labeling about "may contain wheat" or "processed in a facility that processes WBR" as I do read labels for that as well as other names that I am aware of for gluten.

Oh, and does anyone have any reputable links that address whether medications have any requirements for labeling about wheat or gluten? I know that the FDA is working on standards for food, but do those standards extend to medications as well?

Thanks for your help!

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Hi, could someone provide a reputable link for why this is so?

I know my food allergies/intolerances and have been tested for all the other stuff---lyme, thyroid, ad nauseum. And earlier this year, unexpectedly, I had a gluten reaction to plain aspirin where I don't react to it in other medications. There were no other changes in my diet or personal products at the time so the culprit could only have been the aspirin. The only suspect ingredient when I went back and checked after reacting was the maltodextrin. Maltodextrin isn't in the products that I usually use that give me no trouble. It's possible that perhaps the product was made in China like so many things in the store it was from, I guess. Or it was made in a facility that also processes things with WBR. I don't think I have the bottle anymore to check for sure though---I do know there was no labeling about "may contain wheat" or "processed in a facility that processes WBR" as I do read labels for that as well as other names that I am aware of for gluten.

Oh, and does anyone have any reputable links that address whether medications have any requirements for labeling about wheat or gluten? I know that the FDA is working on standards for food, but do those standards extend to medications as well?

Thanks for your help!

http://en.wikipedia.org/wiki/Maltodextrin

Maltodextrin can be enzymatically derived from any starch. In the US, this starch is usually corn

If wheat were to be used in the US, by law, it would have to be listed. Barley, and rye are not players here.

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Given, the information contained herein is for those with celiac who have super sensitive reactions. This is the super sensitive section and does not apply to everyone. The information I seek to verify with reputable references will help me and other super sensitives make better educated choices as to which products we may cautiously add to our lives rather than having to be concerned over most every choice we make. It is not paranoia but a wish to educate ourselves to get/stay healthy and continue to expand our lives. I have no doubt whatsoever that I had a gluten reaction to that aspirin because after it was removed my gluten reaction was removed as well. I have no problem with other medications I have that contain aspirin, as I mentioned already so it's not like there isn't the possibility of a safe source.

Thank you for the link; however, it did not provide in itself or its references what I would consider a reputable source.

While the "volunteer" (yes, the "authors" are "volunteers") who provided this information http://en.wikipedia.org/wiki/Maltodextrin on Wiki is either knowledgeable or good at copying and pasting information, I couldn't go in to see anything about the author or what her other 548 posts were because clicking on the author brought up a donation seeking page. Also there are at least 500 revisions of this particular page that can be found if you click the view history tab---any information on Wiki is only as good as the references used. In our school system Wiki is not an acceptable reference for any research papers due to how Wiki content is provided.

Just to give it a fair shot I went in and read the references provided---none of which were FDA or scientific inquiries directly related to gluten and it's regulation.

From:

http://glutenfreeliving.com/labeling.php

"A food label should contain all the information you need to figure out if that food is safe on the gluten-free diet.

You need to avoid:

Wheat

The Food Allergen and Consumer Protection Act says labels have to list the top eight allergens, including wheat, in plain English whenever they are an ingredient in packaged foods regulated by the FDA."

This specifies packaged foods and doesn't mention drugs?!? And if as quoted below, something is highly processed and rendered gluten free, do they have to label it/do the companies understand that? I can't find any information on that anywhere.

http://glutenfreeliving.com/labeling.php

"Advisory labels

In addition to the ingredients list, you may find advisory labels on a food package. Advisory labels are not regulated and companies use them voluntarily. They give consumers more information about the possibility that a food could be cross-contaminated by an allergen during processing."

So, according to this source, advisory labels are voluntary and not regulated.

http://glutenfreeliving.com/ingredient.php#maltodextrin

"Maltodextrin

Maltodextrin is gluten free. It can be made from a variety of starches, including corn, potato, rice or wheat. However the source does not matter because maltodextrin is such a highly processed ingredient that the protein is removed, rendering it gluten free. If wheat is used to make maltodextrin, "wheat" will be appear on the label. Even in this case, the maltodextrin would be gluten free."

Same source, with no references provided, asserting that "wheat" will appear on the label and even if wheat is used it's so highly processed that it is "rendered gluten free."

The other link that had anything other than a definition of maltodextrin, http://www.sugar.org/other-sweeteners/other-caloric-sweeteners.html#maltodextrin does say: "Additionally, today's commercially important maltodextrin products are produced from corn, potato or rice. Unlike the other starch sweeteners, the undefined term "maltodextrin" can be used in an ingredient list no matter the original source of starch."

Again though, there is no FDA or scientific reference cited. And it says "the undefined term ""maltodextrin"" can be used in an ingredient list no matter the original source of the starch." So this one disagrees with the other one.

So back on the Wiki page: "In the US, this starch is usually corn." It says USUALLY and no references are cited.

On this same Wiki page:

"It is recommended that celiacs or patients with severe intolerance to gluten continue to avoid food with maltodextrin."

Barley and Rye could be players here according to the mention of "cross-contaminated by an allergen during processing." in the advisory label quote above since WBR are all to be avoided by those with celiac and they may be in the same facility since the advisory labeling is still voluntary.

I was going to ask for a link to the law, but then decided to go searching for myself. It's actually the Food Allergen Labeling and Consumer Protection Act of 2004.

SEC. 206. GLUTEN LABELING.

Not later than 2 years after the date of enactment of this Act, the Secretary of Health and Human Services, in consultation with appropriate experts and stakeholders, shall issue a proposed rule to define, and permit use of, the term ``gluten-free'' on the labeling of foods. Not later than 4 years after the date of enactment of this Act, the Secretary shall issue a final rule to define, and permit use of, the term ``gluten-free'' on the labeling of foods.

It's almost 2012 and yet this Act is not really in effect yet as it was supposed to be. Here's a link with information and a link to the FDA Federal Register Notice from 2011: http://www.glutenfreedietitian.com/newsletter/2011/08/08/concerning-the-fda%E2%80%99s-federal-register-notice-on-reopening-of-the-comment-period-on-the-proposed-rule-gluten-free-labeling-of-foods/ The proposed limits for "gluten free" labeling are 20ppm which may be fine for some or many with celiac but is definitely not fine for those of us who are super sensitive.

There's more interesting reading here: http://www.fda.gov/Food/LabelingNutrition/FoodAllergensLabeling/GuidanceComplianceRegulatoryInformation/ucm106042.htm with an Industry Association Rep stating: "Incidental additives such as processing aids (soy lecithin) that result in inconsequential levels of protein from major allergens should not require labeling." and the response to that was: "While soy lecithin is discussed with the report, this specific issue is outside the scope of this report. FALCPA includes procedures for obtaining an exemption from labeling where certain conditions are satisfied.

A Health Professional stated: "Reading food labels are part of a life-and-death decision for the food-allergic consumer. Precautionary labeling - "may contain," "processed on the same line" - forces families and patients to contact the manufacturers to try to gauge the risk. Most families decide on zero tolerance, limiting dietary choices. We know that severity of reaction and the dose required to elicit reactions varies from person to person. If thresholds are established, health care professionals need to know what to tell patients. If food-allergic consumers lose faith in the integrity of the labels, they will be left with a practice called "trial and error." " The response was: "Labeling issues are outside the scope of this report, as are issues about outreach and education should any threshold be established."

So basically, what I'm coming up with from reading all this is that unlike with peanut allergy, people with celiac who are super sensitive or react to under the 20ppm that the US industry is pushing, even though other countries have testing and lower limits, need to be aware that at this point 20ppm is "gluten free" and that is too much for us.

So, in the end I found a reputable source I was looking for. I thought others who are super sensitive would benefit from my sharing what I found here since this thread is about "labeled gluten-free but really not."

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USA Code of Federal Regulations

Sec. 184.1444 Maltodextrin

CAS Reg. No. 9050-36-6. It is a nonsweet nutritive saccharide polymer that consists of D-glucose units linked primarily by [alpha]-1-4 bonds and has a dextrose equivalent (DE) of less than 20. It is prepared as a white powder or concentrated solution by partial hydrolysis of cornstarch, potato starch or rice starch with safe and suitable acids and enzymes.

http://www.accessdata.fda.gov/scripts/cdrh/cfdocs/cfcfr/CFRSearch.cfm?fr=184.1444

Note: FDA also permits the use of other starches including wheat. For example, if wheat is used it must be labeled "wheat maltodextrin". But if you just see the single word "maltodextrin" it is from one of the specified sources, all of which are gluten-free.

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I saw one of those "how they do it' shows once where they were making gummie candies. They coated the molds for the gummie candies in corn starch, not wheat flour. So molds can definitely be dusted with a flour like powder, but maybe corn starch is more commonly used. I think corn starch is probably cheaper and has less noticeable flavor, so would make a better thing to dust a mold with than wheat flour. Wheat flour is naturally sticky when wet, so it would tend to make things stick to a mold. I am not saying people wouldn't possibly use wheat flour sometimes though. Just doesn't seem like it would be a good choice for the purpose is all. If the purpose is to get food items not to stick to the mold anyway.

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I KNOW that I react to xanthan gum. It is another "starch, could be wheat". Regardless of where it comes from etc I know I react to xanthan gum. Full stop.

To be honest I no longer care what medical advice, regulations, laws, chemists, manufacturers, testing etc tells me. If I react I don't do it again. Much more simple and inexpensive.

Until the last few days I've been describing my restricted diet and household regime as "hard" but the more I experience my regime/routines and more I read stuff on here the more simple it appears and it is now a blessing. Simple is so easy. Add something and see/feel what happens. If something happens (bad) - avoid. If something happens (good) then eat/use more of it.

I am slowly but safely adding more options and variety to my diet and other habits and feeling good / safe about it too.

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Unfortunately when it comes to SUPER SENSITIVES it doesn't do much good to know that something is derived from another grain such as corn or rice.

Naturally gluten free grains are often contaminated at levels even about 20 ppm as shown by Tricia Thompson's study. http://www.glutenfreedietitian.com/newsletter/contamination-of-naturally-guten-free-grains/

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To be honest I no longer care what medical advice, regulations, laws, chemists, manufacturers, testing etc tells me. If I react I don't do it again. Much more simple and inexpensive.

This is the best advice ever.

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I complained recently to the Canadian Food Inspection Agency (responsible for enforcing labelling standards in Canada) about a product that was labelled "gluten free" but then also contained warnings about wheat and this was the response I got:

Though CFIA agrees that these statements indicating that the product

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