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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.

Researcher says proposed gluten-free standards are sound - Florida Times-Union (blog)

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Researcher says proposed gluten-free standards are sound

Florida Times-Union (blog)

When you're diagnosed with celiac disease, the first thing you're told is that you have to eliminate gluten from your diet. Basically, if you have celiac, the gluten found in wheat, rye and barley is attacking your small intestine and the only ...

FDA finally regulating foods labeled 'gluten-free' Boston Globe

The FDA Wants Your Gluten-Free Cookies to Actually Be Gluten-Free SF Weekly (blog)

FDA Finally Pays Attention To People With Gluten Intolerance Gothamist

ConsumerReports.org  - Lexology (registration)

all 9 news articles »

View the full article


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FDA needs all of our feedback:

ppm is only half the battle

the other is what will the FDA allow folks to print on their labels

(should NOT be allowed to state gluten free on front product label, IMHO, if says 'processed in facility that also processes wheat' UNLESS there is testing)

Was announced past week that the FDA will await more comments before finalizing regs on gluten free food labeling. Send them your comments!

One last chance to let them know your experience and what needs to be done to protect people with Celiac Disease.

I submitted comment that if it were peanuts, they would not allow a product to state "Peanut Free" on the label, if on the back of the jar, in small print, it said "Processed in a Facility That Also Processes Peanuts"! Why should that be different with gluten? I've been nailed so many times by products like that, until I finally started only buying prepared foods that state "Certified Gluten Free." Really, why should it be OK to double me over with abdominal cramps, sending me back and forth to the bathroom, making me sick to my stomach, kill all the living villi in small intestine, and open me up to a multitude of other auto immune diseases? If they want to advertise gluten free, they should be required to test for it to ensure that it is.

How to contact:

The docket will officially open for comments after noon on Aug 3, 2011 and will remain open for 60 days.

To submit your comments electronically to the docket go to www.regulations.gov

1. Choose “Submit a Comment” from the top task bar

2. Enter the docket number FDA-2005-N-0404 in the “Keyword” space

3. Select “Search”

To submit your comments to the docket by mail, use the following address:

The Division of Dockets Management


Food and Drug Administration

5630 Fishers Lane, Room 1061

Rockville, MD 20852

Include docket number FDA-2005-N-0404 on each page of your written comments.


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I wrote to tell them that 20 ppm foods make me sick. Hardly anyone on the board can eat Amy's, for a 20 ppm example. I prefer GFCO foods too, and I told the FDA that.

There is another "gotcha" in the FDA proposal. They want to only allow foods that wouldn't normally be gluten-free to be labeled as such. Sort of like how it's illegal to label a banana "fat free" since bananas are always fat free. The problem is that Tricia Thompson's study showed CC over 20 ppm in samples of flours from naturally gluten-free grains like millet and buckwheat. How can we ever buy safe baking supplies if it's illegal to test flours and label them gluten-free?


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20 ppm - the "low gluten" $%^&*(*())@+!!! bull pucky manure.

The Mark Basch, gluten glutton (name of blog) writer at the Jacksonville.com link has not been gluten free that long, (since Dec 2010) and hasn't been writing about it that long, and I don't think he's cooked gluten free that much yet, so we get dismissive, simplistic stuff like this -

Guandalini said that "studies have shown quite conclusively" that all celiacs can safely consume up to 10 mg of gluten per day. That means a celiac would have to ingest more than 1.1 pounds daily of foods that contained the maximum of 20 ppm of gluten to potentially damage the intestine, he said.

He also said while all celiacs can consume 10 mg, the majority can consume up to 50 mg of gluten per day, so the majority could eat up to 5.5 pounds a day of those foods before getting sick.

I do not trust anything coming out of the University of Chicago.

You know, and I know, and most of us who really are celiac or gluten intolerant know, somebody or ourselves that have eaten relatively small quantities of gluten contaminated food, sometimes even labeled to that less than 20ppm, and gotten deathly ill on it.

Just like I would not interview just one person for a point of view on a deep topic regarding food safety for millions of patients, and then say, but sure, it's okay, we can adopt the European standards without researching on whether the Europeans are happy, healthy and well on those standards, because this doctor said so. Author Basch does not even use the word "Codex !"

The FDA News release of 8/2/11 http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm265838.htm says that they are reopening comments on the 2007 proposal. .

The U.S. Food and Drug Administration today reopened the comment period for its 2007 proposal on labeling foods as


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Part of the mess:


FDA proposes in Sec. 101.91(a)(3) to define the claim ``gluten-

free'' to mean that a food bearing the claim in its labeling does not

contain any of the following: (1) An ingredient that is a prohibited

grain; (2) an ingredient that is derived from a prohibited grain and

that has not been processed to remove gluten; (3) an ingredient that is

derived from a prohibited grain and that has been processed to remove

gluten, if the use of that ingredient results in the presence of 20 ppm

or more gluten in the food (i.e., 20 micrograms or more gluten per gram

of food); or (4) 20 ppm or more gluten.

Examples of a prohibited grain include, but are not limited to,

barley, common wheat, durum wheat, einkorn wheat, emmer wheat, kamut,

rye, spelt wheat, and triticale. Examples of ingredients that are

derived from a prohibited grain and that have not been processed to

remove gluten include, but are not limited to:

<bullet> Farina, flour made from any of the proposed prohibited

grains, graham, and semolina;

<bullet> Hydrolyzed wheat protein, vital gluten, wheat bran, and

wheat germ; and

<bullet> Barley malt extract or flavoring and malt vinegar.

Because these ingredients are derived from a prohibited grain and

have not been processed to remove gluten, they are presumed to contain


Examples of ingredients that are or are sometimes derived from a

prohibited grain and processed to remove gluten include, but are not

limited to:

<bullet> Food starch--modified (modified food starch); and

<bullet> Wheat starch.

Although these ingredients have been processed to remove gluten,

FDA recognizes that there may be different methods of deriving these

ingredients, and that some methods may remove less gluten than others.

Therefore, FDA proposes to prohibit a food that contains one of these

ingredients from bearing a gluten-free labeling claim if the use of the

ingredient results in the presence of 20 ppm or more gluten in the


there is more at the link


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And then there is this, from the same page:


FDA is not proposing to include oats in the definition of a

prohibited grain. As discussed in section I.C.3 of this document, the

unconditional exclusion of oats from the diet of individuals with

celiac disease is not supported by the National Institutes of Health

Conference Development Conference Statement on Celiac Disease (Ref. 1)

or by the American Dietetic Association (Ref. 58). FDA recognizes that

a small percentage of individuals with celiac disease may not be able

to tolerate some of the proteins that naturally occur in oats. However,

it appears that a great majority of individuals with celiac disease can

tolerate a daily intake of a limited amount (e.g., 50 grams) of oats

that are free of gluten from wheat, rye, barley or their crossbred

hybrids. Oats are reported to add variety, taste, satiety, dietary

fiber, and other essential nutrients to the diet of individuals with

celiac disease; thereby making their diet more nutritious and appealing

(Refs. 44, 51, 56, and 71). Inclusion of oats in the diet of

individuals with celiac disease who can tolerate oats may therefore

result in the improved nutritional and health status of those

individuals (Refs. 55 and 71).

According to comments FDA received in response to its August 2005

public meeting on gluten-free labeling, at least two food manufacturers

can produce

[[Page 2802]]

oats that do not contain gluten from wheat, rye, barley, or any of

their cross-bred hybrids. Allowing such oats to bear a gluten-free

labeling claim would make them easier to identify and perhaps would

encourage other manufacturers to produce such oats. Conversely,

including oats in the definition of prohibited grain could eliminate

any incentive for manufacturers to produce oats free of gluten from

other grains because those manufacturers would have no way of

distinguishing their products in the marketplace. FDA requests comments

on whether the agency should include oats in the definition of a

prohibited grain.

Yee gads. How do I tell them let the manufacturers continue to make the gluten free tested and labeled oats for those who want them, but leave the stuff OUT of the regular category of gluten free foods so it is not showing up unannounced in things like gluten free chips, bread, cakes, and bagels ?

If the great majority of celiac people aren't diagnosed yet, how can they keep making this claim that the "gluten free" oats work for the majority ?


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If the great majority of celiac people aren't diagnosed yet, how can they keep making this claim that the "gluten free" oats work for the majority ?

I might start a poll on the board becasue I'm curious. I have the sense that a lot of us do tolerate oats. I certainly do.

The rest of it is maddening. I've already gone and said my piece. I would encourage EVERYONE on the board to write. Read the legislation and make sure you address anything in it that would be a problem for you when you pick up a box of "gluten-free" food under the new regulations.


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