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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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-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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Melissa.77    1

Well Hello everyone.

 

         Im a brand new memeber and have been reading all these post and just soaking it all in. Im having a hard time with all this at this point and assumeit will get easier at one point. I am a mother of 4 kids so making food for them has even been gettting me sick too does anyone know what to do in this situation. Im very stressed out with it all. I cant even get myself out of bed someday because im so sick or at times Im just depressed. Any Idea for help

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nvsmom    332

Welcome to the board.

 

I agree with Karen, I would switch them to gluten-free foods (over the next few months) as much as possible. Health-wise, there is not a single reason that they should eat gluten - it's mostly a taste and texture preference, but preferences can change.  :)

 

Have you had your children tested for celiac yet?  There is a genetic link so there is a chance that they have it even if they don't have obvious symptoms. You might want to consider testing them before they are eating too gluten-free.

 

And hang in there. The first few months are hard, and the first few weeks are often very difficult because some of us go through a withdrawl and feel even worse for a while.  Keep at it, it will get easier.

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Cookingpapa    2

The key thing is to look at ingredients on the labels and look for possible gluten content.

 

Besides the obvious wheat and barley in ingredients, look for the words "natural flavors".

 

When my wife discovered she had celiac disease it was difficult to cook because she loved Italian food and I love chinese. After some research I've been able to find good gluten free options for pasta and have also found replacements for all the chinese sauces in my pantry.

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tarnalberry    314

When I cook for my husband and daughter, they eat gluten free.  They don't mind; there are lots of very tasty things that are naturally gluten free (and not expensive) that you can make.  We have dinner guests every week and I cook gluten free for them as well.  And I cook gluten free for my inlaws when they stay with us.  And when I take cupcakes to preschool... Yeah, you don't have to cook gluten food for anyone else, and you will likely be healthier if you don't.

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shadowicewolf    166

The key thing is to look at ingredients on the labels and look for possible gluten content.

 

Besides the obvious wheat and barley in ingredients, look for the words "natural flavors".

 

When my wife discovered she had celiac disease it was difficult to cook because she loved Italian food and I love chinese. After some research I've been able to find good gluten free options for pasta and have also found replacements for all the chinese sauces in my pantry.

I don't think so, not in the US. Wheat cannot be hidden. As such, "natural Flavors" cannot mask it. It is also highly unlikely that barley would be in there either.

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Melissa.77    1

Thank you all for support this is a super hard journey for me. I realy love food alot and have always eaten what I wanted to some now Im a bit depressed. Not to mention I have been in severe pain and not able to get of couch most days. So thanks for all the support

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bartfull    565

Melissa, I don't think there is a single one of us who didn't go through a period of mourning. I think most of us had meltdowns at the grocery store at first. Trying to adjust, learn, adapt, and overcome, all while you are feeling so lousy is so overwhelming. But I PROMISE it will get easier. After a while you don't even think about it anymore. You just eat what becomes normal and get on with your day. Soon you will be feeling so much better you will remember what it was like to enjoy all the other aspects of life. Hang in there and stick around the forum. There is always someone to answer questions, cheer you up, congratulate you on your victories, and teach you cool recipes too.

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Takala    413

Look, guys, if some of you don't quit with the misinfo on the USDA "natural flavors" loophole, which allows gluten in barley and rye byproducts, and from processed starches and other grain byproducts which may not be gluten free, to be applied or used as flavoring or seasonings,  you are going to inadvertently make somebody sick.   USDA does not care at all about gluten free labeling according to a statement I have read from the current Secretary Vilsack, he says companies following VOLUNTARY food labeling for the top 8 allergens is enough and does not think the USA needs stricter standards.  Never assume. We do not have gluten free labeling standards here at this time, April 2013, in the United States. 

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kenlove    43

Look, guys, if some of you don't quit with the misinfo on the USDA "natural flavors" loophole, which allows gluten in barley and rye byproducts, and from processed starches and other grain byproducts which may not be gluten free, to be applied or used as flavoring or seasonings,  you are going to inadvertently make somebody sick.   USDA does not care at all about gluten free labeling according to a statement I have read from the current Secretary Vilsack, he says companies following VOLUNTARY food labeling for the top 8 allergens is enough and does not think the USA needs stricter standards.  Never assume. We do not have gluten free labeling standards here at this time, April 2013, in the United States. 

where's the like button for this? (^_^)

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Melissa.77    1

Im sticking aroud here because it has been very helpfull knowing how people cope with all this and to learn more about celiac because I was just diagnosed and told glutin free food only and good luck. Then just sent me on my way

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karichelle    5

I have been made ill by ingredients hidden under natural flavors...barley malt in an herbal tea. They have to declare wheat but not barley, rye, or oats.

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psawyer    687
While "natural flavors" can contain gluten, they very rarely actually do. The most likely source would be barley malt, and that is a relatively expensive ingredient, so it is usually explicitly declared as "malt flavor."
 
If there were wheat in it, in the US (and Canada) it would be required by law to be disclosed as just that, "wheat."
 
Shelley Case on flavorings:

It would be rare to find a "natural or artificial flavoring" containing gluten (a) because hydrolyzed wheat protein cannot be hidden under the term "flavor." and (b) barley malt extract is almost always declared as "barley malt extract" or "barley malt flavoring." For this reason, most experts do not restrict natural and artificial flavorings in the gluten-free diet.

 
Gluten-Free Diet - A Comprehensive Resource Guide, published 2008, page 46
 
Note: As of August 2012 Canada requires ALL gluten sources to be explicitly disclosed. Some foods packaged before August 4 may still be in stores.
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julissa    22

when I realized how serious this all was and went gluten free, so did my kitchen and my family. they want gluten? they can get it out. period. I had 11 people for holiday last week, 100% gluten free Seder, no one noticed, although they all had to know.

 

all they could say was how delish it all was.... modestly speaking of course.

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IrishHeart    1,634

While "natural flavors" can contain gluten, they very rarely actually do. The most likely source would be barley malt, and that is a relatively expensive ingredient, so it is usually explicitly declared as "malt flavor."
 
If there were wheat in it, in the US (and Canada) it would be required by law to be disclosed as just that, "wheat."
 
Shelley Case on flavorings:
 
 
Gluten-Free Diet - A Comprehensive Resource Guide, published 2008, page 46
 
Note: As of August 2012 Canada requires ALL gluten sources to be explicitly disclosed. Some foods packaged before August 4 may still be in stores.

 

 

and Tricia Thompson, RD explains it as well:

 

 

Flavorings & Extracts: Are They Gluten Free?

I frequently am asked about the gluten-free status of ingredients, including natural flavor, smoke flavoring, extracts containing alcohol, and caramel.

Natural Flavor

According to the Food and Drug Administration the terms natural flavor, natural flavoring” or flavoring on a food label, means “the essential oil, oleoresin, essence or extractive, protein hydrolysate, distillate, or any product of roasting, heating or enzymolysis, which contains the flavoring constituents derived from a spice, fruit or fruit juice, vegetable or vegetable juice, edible yeast, herb, bark, bud, root, leaf or similar plant material, meat, seafood, poultry, eggs, dairy products, or fermentation products thereof, whose significant function in food is flavoring rather than nutritional.”

In other words, natural flavor, natural flavoring, and flavoring may be derived from gluten-containing grains. BUT unless you see the words wheat, barley, rye, or malt on the label of food product containing natural flavor, the natural flavor probably does not contain protein from these sources.

Why? Under the Food Allergen Labeling and Consumer Protection Act if an ingredient in an FDA-regulated food product contains protein from wheat, the word “wheat” must be included on the food label either in the ingredients list or Contains statement.

Even though natural flavoring is one of those ingredients (along with coloring and spice) that may be listed collectively, wheat protein will not be hidden. Barley is used in flavorings, such as malt flavoring and some smoke flavoring (see below) but these ingredients generally are declared in the ingredients list.

Rye also could be used in a flavoring but probably will be listed as rye flavoring (which is generally made from rye flour) in the ingredients list or used in a food product you wouldn’t eat anyway, such as a bread product. The United States Department of Agriculture (regulates meat products, poultry products, and egg products) does not allow protein containing ingredients to be hidden under the collective ingredient name of natural flavor. Rather, protein containing ingredients must be included in the ingredient list by their common or usual name.

Smoke Flavoring

This flavoring is derived from burning various woods, including hickory and mesquite. Barley malt flour may be used as a carrier for the captured “smoke.” Some manufacturers list the sub-ingredients of the smoke flavoring used in their products; others do not. I recently came across a salsa product that included smoke flavoring. The ingredient list read, “natural smoke flavor” (contains organic malted barley flour). Typically, I don’t consider salsa a likely place to find gluten but this is a good example of why it really is important to always read the ingredients list of any processed food!

Alcohol-Based Extracts

There is no reason to avoid flavoring extracts, such as vanilla extract because they contain alcohol. The alcohol in these products is distilled and pure distilled alcohol is gluten free regardless of the starting material. Remember, during the process of distillation the liquid from fermented grain mash is boiled and the resulting vapor is captured and cooled. This causes the vapor to become liquid again. Because protein doesn’t vaporize there are no proteins in the cooled liquid.

Caramel

According to the Food and Drug Administration, caramel is a color additive made from heating any of the following carbohydrates: dextrose, invert sugar, lactose, malt syrup, molasses, starch hydrolysates and fractions thereof, and sucrose.

In other words, caramel color may be derived from barley or wheat. However, I have never come across any manufacturer information indicating that caramel was derived from malt syrup. In the U.S. caramel is typically made from corn. In Europe it may be made from wheat. BUT caramel color, regardless of what it is made from probably is an ingredient you don’t have to worry about.

Why? According to DD Williamson, the largest manufacturer of caramel color in the U.S., cornstarch hydrolysate is the most likely source of caramel when the ingredient is made in the U.S. In their plants in Europe, DD Williamson uses wheat as their source of caramel.

However, if a food product regulated by the FDA includes caramel containing protein from wheat, wheat must be listed on the food label either in the ingredients list or Contains statement. Nonetheless, even if a food manufacturer in the US uses wheat-derived caramel imported from Europe, the caramel is unlikely to contain much in the way of intact protein. This is a highly processed ingredient.

Copyright © by Tricia Thompson, MS, RD

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psawyer    687

Look, guys, if some of you don't quit with the misinfo on the USDA "natural flavors" loophole, which allows gluten in barley and rye byproducts, and from processed starches and other grain byproducts which may not be gluten free, to be applied or used as flavoring or seasonings,  you are going to inadvertently make somebody sick.

This allegation lacks foundation. If you have an example, you need to provide:

The exact name of the product with gluten hidden in "natural flavors" (the UPC would be helpful); and

Evidence (proof) that gluten was actually hidden.

Anything less than that it groundless fearmongering.

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kenlove    43
psawyer    687
The first link is to an article about the definition of "natural flavor" that is more than ten years old. The second is about natural versus artificial flavor. The third is the legal definition of flavor from the USDA.

So, again, can anyone provide an actual, verifiable example of a product where gluten was hidden in flavor, whether natural or artificial?

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kenlove    43

The first link is to an article about the definition of "natural flavor" that is more than ten years old. The second is about natural versus artificial flavor. The third is the legal definition of flavor from the USDA.

So, again, can anyone provide an actual, verifiable example of a product where gluten was hidden in flavor, whether natural or artificial?

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

 

is Scotts listing showing it may or may not contain gluten along with:

6) According to 21 C.F.R. S 101,22(a)(3): [t]he terns natural flavor or natural flavoring means the essential oil, oleoresin, essence or extractive, protein hydrolysate, distillate, or any product of roasting, heating or enzymolysis, which contains the flavoring constituents derived from a spice, fruit or fruit juice, vegetable or vegetable juice, edible yeast, herb, bark, bud, root, leaf or similar plant material, meat, seafood, poultry, eggs, dairy products, or fermentationproducts thereof. Whose significant function in food is flavoring rather than nutritional.

-----------------------

I think its obvious some have more problems with this than others.  Also some  have more faith in labeling and adherence to laws than many others.  In my job I see almost daily abuse of a wide variety of labeling laws in Hawaii, including USDA organic and country of origin labeling laws. I would always err on the side of caution when it comes to recommendations regarding what new celiacs might ingest. 

ken

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Juliebove    93

When my daughter was diagnosed, we went totally gluten-free.  My husband only tolerated this for a while and then he wanted regular pizza and sandwiches.  My solution for this was to buy a little fridge for my daughter's gluten-free foods.  Anything that did not need to be refrigerated was put on our card table.  Not the best solution but it cost so much money for the gluten-free foods, I had to wait until I could afford a shelving unit.  A freestanding pantry would have been even better but...  The shelving unit works.

 

I told my husband that if he wanted stuff that we didn't have in the house to go out and buy it and eat it while he was out.  Eventually I began buying him prepackaged sandwiches or getting him something from Subway and once in a while ordering out for pizza.  Since you are the one with the gluten issues, this might not work for you.  But it is likely that your kids shouldn't be eating gluten either.  I would advise getting them tested as well.

 

If it turns out that they do not have gluten issues, then...  I would still try to keep the house gluten-free.  You can use gluten-free pasta, rice, potatoes, etc.  And people probably won't notice the difference.  My Italian husband never once questioned the gluten-free pasta.

 

I don't know if this is true or not but I was watching Christina Pirello (vegan chef) the other night and she said they have now discovered that it can be harmful for people who do not need to eat gluten-free to eat a gluten-free diet.  Says that it makes some sort of changes in the gut.  But even if I did believe this, I would still make the house as gluten-free as possible and let them get their gluten elsewhere.  I'm sure they might get cookies or crackers or even a sandwich when visiting people.  Perhaps you could buy some sort of individually packaged things that they could open by themselves and eat outside?  Like crackers or Goldfish or something.  Or you could buy a big package of those things and have someone else portion them out in little containers or plastic bags, somewhere other than in your house.  Let them eat those outside.  Never in your house.  Never in your vehicle.  When we lived in one place, we had a covered deck.  I would send my then young daughter out there to eat messy stuff.  I could easily hose down any crumbs or mess.

 

I don't know that I would advise a person without gluten issues to eat gluten-free all of the time.  But I don't think it would hurt at all do eat gluten-free at home.  If your kids get school lunches or if you ever dine out, they can eat gluten there.

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IrishHeart    1,634

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

 

is Scotts listing showing it may or may not contain gluten along with:

6) According to 21 C.F.R. S 101,22(a)(3): [t]he terns natural flavor or natural flavoring means the essential oil, oleoresin, essence or extractive, protein hydrolysate, distillate, or any product of roasting, heating or enzymolysis, which contains the flavoring constituents derived from a spice, fruit or fruit juice, vegetable or vegetable juice, edible yeast, herb, bark, bud, root, leaf or similar plant material, meat, seafood, poultry, eggs, dairy products, or fermentationproducts thereof. Whose significant function in food is flavoring rather than nutritional.

-----------------------

I think its obvious some have more problems with this than others.  Also some  have more faith in labeling and adherence to laws than many others.  In my job I see almost daily abuse of a wide variety of labeling laws in Hawaii, including USDA organic and country of origin labeling laws. I would always err on the side of caution when it comes to recommendations regarding what new celiacs might ingest. 

ken

 

 

Interestingly enough, I posted this exact same excerpt from Tricia Thompson's site (see my post above) and her conclusion is:  that it is NOT a problem for celiacs.

 

It appears the confusion may lie in what conclusions we celiacs may draw from the information available to us.

:unsure:

And we should add that Scott's posted list has several footnotes, quantifiers and explanations attached to the list for people to read.

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Takala    413

"Tricia Thompson, RD" is not a regulatory authority.  She is not the FDA nor the USDA, of the United States, which have written rules on this topic, which are original source content which can be found online, which do have exploitable loopholes.  The top allergen list for the USA does not contain 2 sources of triticum gluten - barley and rye.   According to research I have done previously, the FDA does not inspect and test every ingredient used in human grade food manufacture coming into this country, either- the importers must self- certify the content.

 

__________

I don't know if this is true or not but I was watching Christina Pirello (vegan chef) the other night and she said they have now discovered that it can be harmful for people who do not need to eat gluten-free to eat a gluten-free diet.  Says that it makes some sort of changes in the gut.

 

The online vegan community has a subset of people who are very, very, very anti gluten-free diet.  They are being encouraged in this by other entities.   I like to remind them that it's likely 1 in 3 vegans have the genes and the potential to be "stricken" with celiac disease,  ;)  and that there are lapsed vegans who have gone gluten free and regained their health, and practicing vegans who were sick until they went seriously, truly gluten free, which is their worst possible nightmare, right after they find out that there are gluten free bakeries.  Vegan, gluten free bakeries.  :blink:  :ph34r:  Spreading the gluten free gospel of World domination, one cupcake at a time. 

 

 

How much would it shock people here that I could point out that there are registered dietitians on the internet who are also on the boards or on the advisory councils of wheat lobby organizations, which are routinely putting out talking points which are designed to be deliberately harmful to the acceptance of the safety of a gluten free diet, without disclosing the source of what paid for said "studies,"  and what were the qualifications and field of study of the person who wrote the study, allegedly showing the "harm" of a gluten free diet ? It is always the same talking points pointing out what they believe to be the superiority of a grain- based diet, the inferiority and harm of a low or no grain diet, the near insistence that adequate fiber and certain vitamins can only be found in a high grain diet, (not true) and it always is nearly word for word the same talking points found on the professional dietitians organization's websites regarding "a healthy diet."  They also, almost comically, note that many celiacs gain weight on a gluten free diet, with a hint of disapproval, saying that this shows the gluten free diet is not healthy, missing the larger reason that hey, maybe they aren't suffering the look of fashionable malnutrition anymore. :rolleyes:   If only we could get it through their heads about the relationship between a high carb diet and insulin resistance and the differences between "normal" people and those who suffer from auto immune diseases.    But these people are just doing what they have been hired to do, even if they believe in it.  The culprits are the various interests competing for agricultural subsidies from government. 

 

It would be better if the food manufacturers of America didn't keep getting offended that we'd like to just know what is really in the package that our tax dollars heavily subsidized to bring to market. 

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karichelle    5

Torani flavored syrups are one example of a gluten-containing ingredient being part of "natural flavors" and not being otherwise declared. The FAQ page on their website lists the following flavors as containing gluten:

 

Bacon, Classic Caramel, Sugar Free Classic Caramel, Toasted Marshmallow and Sugar Free French Vanilla.

 

Here are the ingredients for the Classic Caramel: Pure cane sugar, water, natural flavors, citric acid, sodium benzoate, potassium sorbate (to preserve freshness). I have one of the SF Classic Caramel and it does not say that it contains wheat or gluten anywhere on the package. But it does, according to their website.

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Melissa.77    1

Im curious how long does it take your body to heal after being glutin free. I know that going glutin free is a life long thing but how long before your body starts feeling better. Also wanted to know if others experianced over all down and not feeling like there is much in the world for you to do. Im having a hard time with this and dont have any support at all so its hard.

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