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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.

Could The Milky Way Ingredients Have Been Misleading?
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Hello all! I am still quite new to this whole diet, being introdcued only before Thankksgiving. From the start of this diet, I've seen good imporvement, which makes me happy. Anyways, I just got a Milky Way bar a few minutes ago, read up online a bit, read the ingredients (I'm already pretty knowledgeable of the good and bad of ingredients, but not wholly familiar), and it seemed okay. I saw no wheat ingredients, but I DID see an ingredient listed as "Malted Barley". Now, I knew that most things "Matled" cannot be good news. What lead me to believe it's gluten-free status was printed on the bottom: the allergy information, "MAY CONTAIN PEANUTS". Now, if wheat or gluten was in that product, it would've also listed "CONTAINS WHEAT INGREDIENTS", right? Since it said nothing about wheat, and was made by Mars (which I heard was very good about giving you correct allergy information and ingredients on their products), I thought that it must be okay. The doctor described me as having "Latent Celiac Disease", I've felt slightly better after the diet, and my mornings have been much less agonizing. I don't exactly get "glutened" when I eat products with gluten, but I do experience very slight discomfot and burping, which I've been having after eating this. Should I saty away from these for good, or am I okay? My body can't exactly give me the asnwers....

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Hello and welcome. I'm glad you are feeling better. You are correct that Mars is very good about labeling and they used the word "barley" to warn you.

We can NEVER eat wheat, rye, or barley, and you want to avoid oats unless they state they have been tested for gluten. "Contains wheat ingredients" only covers wheat. If you see a rye or barley ingredient like malted barley anywhere in the ingredients, the food is not safe to eat. You cannot eat any more Milky Way Bars, or other candies with malt, barley malt, or malted barley.

There is an unsafe ingredient list here. You might want to print it out and keep a copy until you are more used to the label reading. It's a pain!

http://www.celiac.com/articles/182/1/Unsafe-Gluten-Free-Food-List-Unsafe-Ingredients/Page1.html

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Oh, and avoid oats until you are 100% well. At that point you can cautiously try adding some gluten-free oats and see if you can tolerate them. Some celiacs react to the gluten-like protein in oats as badly as if it were wheat.

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Milky way dark bars are gluten free!!

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Welcome to the board, and welcome to the process of learning to read labels.

The Milky Way bar contains gluten (barley malt), and is not safe for us.

Gluten, defined in terms of celiac disease, is a protein found in three grains: wheat, rye and barley. Oats are generally contaminated with wheat, and a minority of us also react to pure oats.

The list of top allergens that must be disclosed includes wheat, but not the other three.

"Contains" and "May Contain" are different animals, too.

In the US, if a top-eight allergen is present, it must be listed by its common name, EITHER in the ingredients list OR in a contains statement. Only allergens may be listed in the contains statement. The eight allergens under the federal Food Allergen Labeling and Consumer Protection Act (FALCPA) are: wheat, soy, milk, peanuts, eggs, tree nuts, fish, and crustacean shellfish. Since barley and rye are not on that list, they will never appear in a "contains" statement. (In Canada, the list also includes sulfites and sesame seeds.)

If there is a "contains" statement, it must list every allergen present. But, again, barley and rye are NOT "allergens" as defined by the label regulations.

In this example, barley was listed in the ingredients by name. As someone new to this, I understand your confusion. But the label is not misleading, and conforms to the rules. You can not rely solely on the "Contains" statement to identify gluten. You'll know about wheat, but not barley or rye.

Rye is not something you need to worry about. It is in very few foods, and those are confined to selected baked goods where you would expect it, like rye bread and pumpernickel. In my experience, it is always clearly listed on the label.

"May contain" means that the ingredient is not intentionally present, but despite Good Manufacturing Practices and other precautions, it is not possible to be sure that trace contamination does not occur. Like the previous discussion, only ingredients legally described as allergens will be listed.

And, last, a list of companies that has a clear gluten policy. If you don't see "wheat, rye, barley, barley malt, oats" on the labels, its not there, or hidden in "flavors, starches, etc." This makes shopping MUCH easier.

Edit: Three other posts were made while I was composing this.

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Great explanation, Peter!

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Thank you very, very much Skylark and psawyer, I appreciate the help and explanation tremendously! I didn't have a reaction to the Milky Way bar when I ate it before the post but I do now understand that it is harmful, and to look out for anything with "Barley". But I have one more question, say that something just had malt as an ingredient or did not have something like Barley, Wheat, Rye, etc. at the end but it was "Malted" something else. Is this Malt ingredient harmful, as well? I think I remember hearing something about Malt ingredients not being safe. I appreciate it! And also to AMom2010, I'm very happy to hear that the midnight edition is gluten free. Milky Way is my favorite and although I'm a little upset with having to part with the original, the midnight not being quite as good, I'm still happy that I can enjoy one Milky Way product.

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The "Simply Caramel" version of Milky Way is also gluten free. It's closer to the original than Midnight. :)

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    • Gluten ataxia...?
      I was explaining that some people have other trouble that is immune related and caused by eating gluten, but doesn't effect the gut in a noticeable way. According to the paper that I quoted there are some people which have different types of brain problems but don't have inflammation when tested by a biopsy.  The author used the term "non-Celiac gluten sensitivity" to refer to anyone who has any brain trouble that can be traced to gluten but without obvious gut inflammation.  There are a lot of different possible ways gluten can effect the brain some may not be related to the gut.  It could still be an immune system problem.  Normally "non-Celiac gluten sensitivity" refers to just a food intolerance.  Withdrawal symptoms are not normal and could be indicative of an immune system response of some sort, but I don't know for sure.        
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      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
    • Weird Reaction
      Hi Richie,  I've not heard of this drink before, as I live in the UK, but any drink made from barley is something you should avoid.  There's a brand in the UK that makes lemon and barley water and orange and barley water and Coeliac UK say it is not safe for people with Coeliac disease.  (Our labelling laws in the UK changed a couple of years ago).  You say the drink you had was under 20 ppm, which is acceptable (usually) for coeliacs, but a lot of people are super-sensitive to gluten even in very small amounts.  I recently had a similar problem with something which was supposed to be okay for coeliacs, but when I checked the website of the product, for all it said there were no gluten containing ingredients, it was produced in an area where gluten was present, which was enough to put me off and must admit, the symptoms you describe sound very much like I experienced at the time.  (Personally I'd be avoiding that particular drink like the plague from now on). One other thing though,  have you checked the ingredients to see if there could be anything else in it which you may be intolerant to? 
    • Confused
      I have not. I'll talk to my doctor about it
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