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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.

Barley And Rye Labeling/ingredients
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I am new to this community, as my daughter was only recently diagnosed with celiac disease. The first thing I noticed when trying to go gluten free is that, although wheat has to be disclosed on product labels in the U.S., barley and rye don't. It makes it really hard to avoid those items, and allows hidden sources of gluten in our food. Sometimes I wonder if these sources are negatively effecting my daughter's health. I try to avoid them, but I can't always remember or know all of these sources (which have strange and cryptic names) while shopping. Other countries (Australia comes to mind) have allergy labeling requirements for these items.

There is an online petition available, and I hope people who are sick of worrying about hidden barley and rye in their food will sign it. Maybe together we can get this changed! My hope is to get barley and rye added to the list of allergens required to be disclosed by the Food Labeling and Consumer Protection Act. The petition is on the White House website and only has a few signatures so far, so it can't be found by searching. The only way to access it is the link. Here is the link:

https://petitions.whitehouse.gov/petition/add-barley-and-rye-list-allergens-food-labeling-and-consumer-protection-act/Bp2Tkj5n (https://petitions.whitehouse.gov/petition/add-barley-and-rye-list-allergens-food-labeling-and-consumer-protection-act/Bp2Tkj5n)

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The FDA has just passed a new rule in which any product claiming to be gluten-free MUST be gluten-free down to 20 PPM. It will cover ANY gluten grains.

It won't be fully in effect until next year. That will help when it comes to foods with gluten-free on the label. But lots of foods are gluten-free without labeling that they are.

 

There are some companies who voluntarily label their ingredients clearly. Kraft is one of them. Con Agra foods is another one. There are others. If something is sourced from barley for example, it will say in the ingredients list, "Malt (from barley)". Other than that, you must contact the company. I usually do an email so I can get it in writing, then follow up with a phone call. It's a pain, but I don't have to do it too often because I usually eat just whole foods.

 

Medications and supplements though, I ALWAYS call because they change their ingredients (as do food comanies) often, depending on availability and price.

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Rye does not hide, nor do oats. It is theoretically possible to conceal barley in "flavors" but nobody does that because it is malted barley--an expensive ingredient that they will boast about, not hide.

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Rye does not hide, nor do oats. It is theoretically possible to conceal barley in "flavors" but nobody does that because it is malted barley--an expensive ingredient that they will boast about, not hide.

I have noticed that people who have been gluten free for a long time don't seem worried about the barley issue. Maybe they forgot, or don't realize, how hard it is when you're new. We have been gluten free for 18 months, and for the first time ever the other day I found out "natural smoke flavoring" can come from barley. This is not disclosed on labels. Also, just the other day, I found out yeast extract comes from barley most of the time (not always, but since it's not disclosed, who knows?). 

 

There's also a ton of misinformation out there. Just a couple weeks ago we went to the gluten free food fair in Denver. Sprouts (a natural grocery in the west) was there handing out pamphlets about a gluten free diet. The very first page said maltodextrin comes from barley. I had to go do a bunch of searching, because I didn't think that was the case and maltodextrin is in everything! Still, my understanding is it can come from barley sometimes, but that's unusual.  All this stuff could be cleared up by simply having the manufacturer's state barley on the label. After all, it's their product and they know what goes into it, not us!

 

It's after all these realizations hit me that I thought it's really important that barley be disclosed. It only takes a few seconds to sign a petition. I'm sure all of us newbies would really appreciate it! :-)

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It does if the product is labeled gluten free, so that is a step in the right direction. But only products labeled gluten free have to adhere to that. A can of beans or a condiment or other item is often not labeled gluten free and the hidden barley is still there.

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It does if the product is labeled gluten free, so that is a step in the right direction. But only products labeled gluten free have to adhere to that. A can of beans or a condiment or other item is often not labeled gluten free and the hidden barley is still there.

 

 

Actually, there are basic labeling rules for food that require all ingredients to be labeled.  They can't put barley or sugar or broccoli in something without denoting it.  Barley is an ingredient that they will want to label like - malt, or barley in a soup or bread.  Its not really as evil as everyone seems to think.

 

However, if barley and other gluten had to be called out in big bright letters, it would save us a lot of time explaining things!  I prefer pink myself.  :D

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The very first page said maltodextrin comes from barley.

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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Thanks psawyer. I had to do a bunch of searching the other day to find that out after I read the Sprouts pamphlet. This is supposed to be an educational pamphlet for people trying to follow a gluten free diet, so it's pretty bad that they had such misinformation in there. It also says brown rice syrup and MSG might have gluten in them. These are common ingredients too (though like most people I try to avoid MSG). Where does the gluten come from? Or is that misinformation too? My guess, if there is gluten, is that it comes from barley. Again, would not be at all confusing if the FDA required barley to be listed as an allergen, but they are not required to do that. Just adding an item to the common allergens list in the FLCPA would make life so much easier for all of us! I like the idea of bold, pink lettering too!

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Brown rice syrup and monosodium glutamate (MSG) are both gluten-free.

Hidden barley is not the big deal you seem to be making it out to be. If present in a food, it is almost invariably listed as either "barley" or "malt."

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When I first went gluten-free, I didn't even know malt came from barley. I bet there are a bunch of people out there that are the same way but haven't taken the time, or known, to find out. But it's not just malt, there are some of other sources that my research shows come from barley - smoke flavor and yeast extract. Obviously the Sprouts pamphlet is wrong, and that's something I should take up with them. But I think these other ingredients having the potential for gluten come from a pretty good source. Here's a link to the article about smoke flavoring: http://www.glutenfreedietitian.com/articles/BLOGFlavoringsExtractsAreTheyGlutenFreeBlog.10.pdf. I can't find a direct link to the yeast extract article, but it's about half way down the page here: http://www.glutenfreedietitian.com/newsletter/

 

This celiac dietitian's recommendation is to contact the manufacturer of anything that has smoke flavoring or yeast extract in it. I don't think we should all have to spend 5 hours in the grocery store looking up sources of ingredients for specific products, or calling manufacturers, before we can put them in our carts. Obviously, an easier solution is to avoid the product. But my point is there are countless celiacs out there who don't KNOW they should avoid the product - even probably with malt syrup. There's the rub. I've seen the Australian labeling and it is much clearer than ours (anything sourced from wheat, barley or rye is in bold with the word wheat, barley or rye in it).

 

The main reason I have a bug up my butt about this is because I'm dealing with my daughter having a serious illness. She doesn't have symptoms (other than not growing), so I don't have a way to know if her intestines continue to be damaged without doing another intestinal biopsy. I'm hoping for a little more help from my elected officials to be sure she doesn't end up with some of the serious side effects of untreated celiac disease. As it is, she is already extremely small for her age because of this disease. And losing her is my worst nightmare.

 

I understand that those on this site aren't concerned. I won't push it anymore.

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But, as I said before, if you stick to Kraft or Con Agra, (somebody help me out here and tell us the other companies) you won't have to call or email because it will be stated on the label. If they use smoke flavoring it will say, "Smoke flavoring (from barley)" if it has barley in it. If it just says, "Smoke flavoring", it is NOT from barley.

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... if you stick to Kraft or Con Agra ...

Add Unilever to that list, and you will have three of the largest food companies. Also count in Campbells (the soup co.) and Hormel.

Those companies own many, many other brands which you may not immediately associate with them. For example, Oscar Mayer is Kraft, and Lipton is Unilever.

A more complete list is here.

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