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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.

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This is how foods are labeled gluten free here.. I'm not sure if it's right or wrong. I really need your insights on this. The text might sound funny because I translated it through Google translate:

Most people who have celiac disease can not tolerate more than 50 mg gluten per day. There have been clinical research has emerged is the general limit in celiac disease. Based on a recommendation to that effect from the Codex (a global regulatory framework for food under the UN) has, since the EU Commission decided:

products that do not have more than 20 ppm (parts per million = 1 mg gluten per kg = 0.0001%) may be marked with gluten-free

and those with 21-100 ppm may be marked with very low gluten.

Some need naturally gluten-free

A smaller number who have celiac disease can tolerate less than 20 ppm gluten or no gluten at all. They then need to eat a diet that is naturally free of gluten, thus avoiding all that is derived from wheat, barley and rye.

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I'm not sure what you're asking. Are you asking about the gluten-free designation of 20ppm, or the very low gluten? (or both?). I know there are proposed regulations in the US for <20ppm for a gluten-free label, and some places that test to that level are still bothersome to some of us (i.e. Quaker Oats rice cakes). Personally, given the above information, I would avoid anything labeled 'very low gluten' since that's still more than should be consumed by one with celiac disease, I'm pretty sure. If I'm wrong someone please feel free to correct me.

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I wouldn't touch anything marked low gluten with a ten foot pole! :o

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I'm not sure what you're asking. Are you asking about the gluten-free designation of 20ppm, or the very low gluten? (or both?). I know there are proposed regulations in the US for <20ppm for a gluten-free label, and some places that test to that level are still bothersome to some of us (i.e. Quaker Oats rice cakes). Personally, given the above information, I would avoid anything labeled 'very low gluten' since that's still more than should be consumed by one with celiac disease, I'm pretty sure. If I'm wrong someone please feel free to correct me.

I was worried about the safety limit for most celiaks. I've been eating products labeled "gluten free" thinking they contained 0 gluten, but turns out only "naturally" gluten free products are 0.

My symptoms are extremely sneaky and I would hate to think I was being glutened then blamed it on something else.

and do all of these classifications contain less gluten than products labeled "may contain traces of gluten"?

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Do not assume that products labeled "gluten-free" do in fact contain gluten. Depending on where you are, some content may be present.

In Canada, a product can not be labeled "gluten-free" if it contains ANY ingredient derived from wheat, barley, rye or oats. That usually means no gluten at all. Any gluten that is present is from accidental contamination.

A limit of 20 ppm does not mean that the products, in fact, contain 20 ppm. Because of variances and accuracy of the testing, to consistently test below 20 the manufacturer must aim far lower. Remember, zero is less than 20.

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Do not assume that products labeled "gluten-free" do in fact contain gluten. Depending on where you are, some content may be present.

In Canada, a product can not be labeled "gluten-free" if it contains ANY ingredient derived from wheat, barley, rye or oats. That usually means no gluten at all. Any gluten that is present is from accidental contamination.

A limit of 20 ppm does not mean that the products, in fact, contain 20 ppm. Because of variances and accuracy of the testing, to consistently test below 20 the manufacturer must aim far lower. Remember, zero is less than 20.

I should move to canada

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I should move to canada

You do not have to move to Canada to eat safely or be able to read labels. There is a big learning curve with this diet but, in time, you will figure out what you can safely consume. The vast majority of Celiacs can eat safely from companies with dedicated facilities without fear of cc or ingesting gluten at unsafe levels...or any gluten at all, as Peter stated. Both Canada and the US do a great job with this. I do not rely on government to decide what is safe for me to eat. I eat products from both Canada and the US without issue and I am extremely sensitive to trace amounts.

As for Rodney Ford, I take whatever he spews out with a huge grain of salt. Banning gluten worldwide? Ridiculous. Not everyone has a problem with gluten and I am not a control freak who wishes to deprive others of what I cannot eat myself. He's an alarmist. He also thinks everything is contaminated with gluten and if that were true, no one would heal. It's nonsense.

If you feel a product is safe, the give it a try. If you react, it doesn't always mean it was from gluten. Celiacs have sensitive guts and other food that does not contain any gluten may bother you for awhile. Do not despair and be patient...you will learn like everyone else.

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You do not have to move to Canada to eat safely or be able to read labels. There is a big learning curve with this diet but, in time, you will figure out what you can safely consume. The vast majority of Celiacs can eat safely from companies with dedicated facilities without fear of cc or ingesting gluten at unsafe levels...or any gluten at all, as Peter stated. Both Canada and the US do a great job with this. I do not rely on government to decide what is safe for me to eat. I eat products from both Canada and the US without issue and I am extremely sensitive to trace amounts.

As for Rodney Ford, I take whatever he spews out with a huge grain of salt. Banning gluten worldwide? Ridiculous. Not everyone has a problem with gluten and I am not a control freak who wishes to deprive others of what I cannot eat myself. He's an alarmist. He also thinks everything is contaminated with gluten and if that were true, no one would heal. It's nonsense.

If you feel a product is safe, the give it a try. If you react, it doesn't always mean it was from gluten. Celiacs have sensitive guts and other food that does not contain any gluten may bother you for awhile. Do not despair and be patient...you will learn like everyone else.

Thanks Gemini. I really hope I will get the hang of it quickly.

What brought this "despair" was a serious labeling issue I found at supermarkets here. All manufacturers are required by law to inform whether their food contains trace amounts of gluten or not. I was eating Lindt dark chocolate for some time, but since I wasn't feeling well I went and googled their website. Turns out ALL Lindt's products may contain trace amounts of gluten. ALL OF THEM!

I checked at the store and none of their products stated that in the labeling. I live in Sweden by the way, and they take celiac and labeling very seriously here, but this makes me wonder what other products could contain trace amounts of gluten without stating it. It made me wonder just what "trace amounts of gluten" is classified as.. it doesn't mean gluten-free.. it shouldn't.

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It nearly impossible to certify a product as truly gluten free if it is manufactured in a facility that make other products that contain gluten. The currently available tests for manufacturers to use have a lower sensitivity limit of about 10 parts per million. In order to provide a margin for error the limit is set at 20ppm. That isn't very much and for many if not most people that amount of gluten will not be a problem. The amount it takes to produce a reaction varies across a broad spectrum ranging from more than a slice of bread to less than a bread crumb (me). It is also very dependent on your age and how long you have been gluten free. If you are young, especially in your teens, then you can probably tolerate much more gluten than somebody like me. I am 62 and have been gluten free since 1988. I am so sensitive that even typing the word gluten makes me feel ill. (kidding, maybe). The longer you have been truly gluten free the more sensitive you become. That is a generalisation and like all such there are exceptions.

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It nearly impossible to certify a product as truly gluten free if it is manufactured in a facility that make other products that contain gluten.

With due respect, I disagree. The so-called gluten-free facility is an overrated idea. Contamination can occur at ANY point on the supply chain, not just at the final production facility. Planet Earth is a facility that also grows wheat, rye and barley. :unsure:

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Thanks Gemini. I really hope I will get the hang of it quickly.

What brought this "despair" was a serious labeling issue I found at supermarkets here. All manufacturers are required by law to inform whether their food contains trace amounts of gluten or not. I was eating Lindt dark chocolate for some time, but since I wasn't feeling well I went and googled their website. Turns out ALL Lindt's products may contain trace amounts of gluten. ALL OF THEM!

I checked at the store and none of their products stated that in the labeling. I live in Sweden by the way, and they take celiac and labeling very seriously here, but this makes me wonder what other products could contain trace amounts of gluten without stating it. It made me wonder just what "trace amounts of gluten" is classified as.. it doesn't mean gluten-free.. it shouldn't.

The learning curve is very tough the first few months...grocery store missions took so much time reading every flipping label...but you do learn what is safe and what is not...go easy on yourself during these first days...you will make mistakes...we were extremely careful, but it took quite awhile to completely rid our kitchen and my shopping missions of gluten. When in doubt google the item with the words gluten free...it will usually bring you back to several threads right here on celiac.com of people's experiences. Emailing the food manufacturer has worked well for me...I kept a list at the store if I had a question of an item I'd send an email and nearly always had an answer before my return to the store. Some folks like to call the manufacturer, I just prefer email so I have a record of whom I contacted...makes it easier to share the info with others ;)

Hang in there...you will have other days of frustration...but eventually you will become an expert and feel safer and confident in what you are eating.

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The learning curve is very tough the first few months...grocery store missions took so much time reading every flipping label...but you do learn what is safe and what is not...go easy on yourself during these first days...you will make mistakes...we were extremely careful, but it took quite awhile to completely rid our kitchen and my shopping missions of gluten. When in doubt google the item with the words gluten free...it will usually bring you back to several threads right here on celiac.com of people's experiences. Emailing the food manufacturer has worked well for me...I kept a list at the store if I had a question of an item I'd send an email and nearly always had an answer before my return to the store. Some folks like to call the manufacturer, I just prefer email so I have a record of whom I contacted...makes it easier to share the info with others ;)

Hang in there...you will have other days of frustration...but eventually you will become an expert and feel safer and confident in what you are eating.

Thanks Lisa. You make things sound not as hard as I think them to be :-) I should start keeping records and making a list as well.. there definitely is no downside to that!

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With due respect, I disagree. The so-called gluten-free facility is an overrated idea. Contamination can occur at ANY point on the supply chain, not just at the final production facility. Planet Earth is a facility that also grows wheat, rye and barley. :unsure:

Quite so. However, the chance of contamination is far higher in a facility that does process products with gluten. I did not mean to imply that a gluten free facility was a guarantee of a gluten free product.

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Thanks Gemini. I really hope I will get the hang of it quickly.

What brought this "despair" was a serious labeling issue I found at supermarkets here. All manufacturers are required by law to inform whether their food contains trace amounts of gluten or not. I was eating Lindt dark chocolate for some time, but since I wasn't feeling well I went and googled their website. Turns out ALL Lindt's products may contain trace amounts of gluten. ALL OF THEM!

I checked at the store and none of their products stated that in the labeling. I live in Sweden by the way, and they take celiac and labeling very seriously here, but this makes me wonder what other products could contain trace amounts of gluten without stating it. It made me wonder just what "trace amounts of gluten" is classified as.. it doesn't mean gluten-free.. it shouldn't.

I missed this reply you made and wanted to clarify the problem with Lindt chocolates. The gluten in Lindt is from barley and in the States, barley is not one of the 8 major allergens that require label warnings...that's where the ingredients listings come into play. This is the learning curve we are talking about and it can seem confusing and daunting at first. Barley is used commonly as a sweetener in candies so you do have to be careful of that.

I had to give up Lindt chocolates and now eat Ghirardelli.

I have heard that Sweden is excellent at labeling but it looks like maybe the barley may not be required along the same lines as here in the States?

It cannot be marked gluten-free if it contains barley but if you are looking at something which is not officially labeled as gluten-free, then you have to scrutinize the label or call the company. I know...it's a real pain at times, especially when I see those barley pops I used to love as a kid. I miss barley but don't miss the wheat!

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I missed this reply you made and wanted to clarify the problem with Lindt chocolates. The gluten in Lindt is from barley and in the States, barley is not one of the 8 major allergens that require label warnings...that's where the ingredients listings come into play. This is the learning curve we are talking about and it can seem confusing and daunting at first. Barley is used commonly as a sweetener in candies so you do have to be careful of that.

I had to give up Lindt chocolates and now eat Ghirardelli.

I have heard that Sweden is excellent at labeling but it looks like maybe the barley may not be required along the same lines as here in the States?

It cannot be marked gluten-free if it contains barley but if you are looking at something which is not officially labeled as gluten-free, then you have to scrutinize the label or call the company. I know...it's a real pain at times, especially when I see those barley pops I used to love as a kid. I miss barley but don't miss the wheat!

Sadly the hard way is the only way to learn in these situations :-(

It's not a very excellent system here. I got a reply from the responsible department about this issue and traces of gluten are sadly considered gluten free as long as it doesn't go over 20ppm.. so for a food that is guaranteed to contain as much as or less than 20ppm, the company is not obliged to label the product as gluten-free. I don't like that but the advice I got from everyone on these forums was invaluable and that I like :-) It has helped me immensely! I owe all of you :-)

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I can't seem to tolerate any. I wonder what people who aren't super sensitive but consuming lots of 20 ppm products (think about it - breakfast cereal/toast, sandwich at lunch, pasta etc for dinner with lots of possible Gluten-Free snack foods in between). What is it doing to them? There needs to be so much research into ppm measures and diet habit.

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It may not be doing anything to them. There is no proof that a labeled gluten-free product contains 20ppm on a routine basis. Most companies worth their salt and committed to providing gluten-free food to the Celiac population strive and test for much lower levels. If they did not, then many more people would not be healing on the gluten-free diet. There would be no point to the gluten-free food industry. Most people who continue to have problems have underlying conditions or multiple intolerance's and that is far more common than the notion that gluten-free food products contain enough gluten to hurt people on a regular basis.

I ate gluten-free bread from day one on the diet because I had to...my weight was dangerously low. I was the poster child for Celiac Disease yet I have healed well over a 7 year period. Healing does take time, as we well know. I am extremely sensitive to trace amounts of gluten yet have no trouble with the small amount of processed gluten-free food I do consume. If it were that contaminated, I would be getting sick when I eat it. I think the fear generated by some over this causes more damage than gluten itself!

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Hi Dani,

It is a good idea to consider all the ingredients in the chocolate as possible problems. If it has soy, which most chocolate does, that could be a problem. If it has milk(dairy) that could be a problem too. Of course it could be the chocolate itself causing a reaction. In that case you could try carob as a substitute.

If you can get 100% chocolate you can make some candy yourself and test the chocolate reaction. Or you could get some soy and test that. Or some milk to try, and then try hard cheese. Not all the same day of course. Spread it out over a few weeks. And trial them for 3 days running. The problem with that approach, is if you are already reacting to some other food in your diet, it can be harder to define the reaction. But the idea is to try foods in their whole state, not mixed in with other ingredients that you haven't already eliminated as problems. If you were going to mix them with other foods, you need to be sure those other foods are not a problem first.

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Hi Dani,

It is a good idea to consider all the ingredients in the chocolate as possible problems. If it has soy, which most chocolate does, that could be a problem. If it has milk(dairy) that could be a problem too. Of course it could be the chocolate itself causing a reaction. In that case you could try carob as a substitute.

If you can get 100% chocolate you can make some candy yourself and test the chocolate reaction. Or you could get some soy and test that. Or some milk to try, and then try hard cheese. Not all the same day of course. Spread it out over a few weeks. And trial them for 3 days running. The problem with that approach, is if you are already reacting to some other food in your diet, it can be harder to define the reaction. But the idea is to try foods in their whole state, not mixed in with other ingredients that you haven't already eliminated as problems. If you were going to mix them with other foods, you need to be sure those other foods are not a problem first.

Makes sense :-) Yeah I think I was having reactions to other foods and thought I was still being glutened.

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The 'under 20ppm measurement' is what the EU uses to define 'gluten free' -- it is under the Codex Alimentarius. This is why we have gluten-free wheat starch in the EU -- which makes me ill (I ingested it by mistake when I was a newbie and didn't know better!) This link actually has a good explanation: http://www.coeliachelp.me.uk/codex.html

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