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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.

Being Celiac In America Is Unacceptable!
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39 posts in this topic

I think much of what's on the supermarket shelves today should not be labeled "food".

Yummy....as long as you ignore all the chemical additives:

Anyway, my point is, it's easy for us to focus on gluten, because that's what our issue is, however I think it's just a symptom of our messed up food system.

You are so right. If it weren't for this diagnosis I'd still be eating that stuff without even worrying too much about the consequences.

There are advantages to all this.

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I believe it all comes down to personal responsibility. No one but me is responsible for what I eat. I read all labels and make my decisions based on that. If a company doesn't accurately label their products, I just don't buy from them.

I do not think most companies (or, really, any companies) are trying to poison us. They have a responsibility the their stock holders to make a profit. If using dedicated lines would cut deeply into the bottom line, they don't do it. Make your own decisions about what you will or will not eat.

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I, like Gemini, have not really had any trouble finding safe foods. I always read every single ingredient every time I purchase a product, even if I've purchased it a hundred times before - this has saved me from a number of glutonings. I buy all of my food from the regular store aisles, not from the "specialty" aisles, with the exception of two products that I order online (bread and pretzels). I have been doing this for years with no problems, and I am severely sensitive to gluten. It will double me over in intense pain within fifteen or twenty minutes of eating. I have never purchased an item that did not list gluten in the ingredients that made me sick. But I took the time to learn how food is made and what ingredients could be a risk to me. I have no problem passing on products that I'm not a hundred percent sure about.

The issue with labeling gluten is much more complex than a lot of people realize. It's far more than just not wanting to do it or not wanting to spend money on ink. The problem is that the companies are buying whatever fillers and starch they can afford, and sometimes it's wheat and sometimes it's corn and sometimes it's potato. Requiring that they label wheat on the ingredient is a major issue because it would require that the company choose the starch or filler that they will always use, which means they are forced to always buy the same product even if the price becomes far higher. Or they can print different labels for every batch of their food that's created, but that's much more expensive than you would think. It saves everyone (including consumers) a lot of money to allow some of these things to not be marked on the label. It would be great if everything didn't revolve around money, but there's nothing we can do to change that. Pestering the companies will only result in them adding labels to all of their food that it may contain wheat just to be safe from getting hounded by gluten free advocates.

I wish labeling was clearer, but I don't expect companies and the government to cater to my needs. I feel that I am perfectly capable of determining what food is and isn't safe for me, and the only foods I've been really uncertain about were foreign foods or really bizarre ingredients. And then I ask or do research before eating it.

In my opinion, the outrageously high prices of certified gluten free products are much more worth getting up in arms about than the mainstream food producers not labeling gluten in the way we'd prefer. Rice is a cheap crop. I can get rice pasta at the local Asian store for about a dollar a box. The rice pasta in the specialty section at my regular grocery store is five to seven times that cost. That upsets me. But mainstream labeling does not.

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A few words in defense of those who are concerned and cautious:

My problem is that I end up getting really sick every time I eat something that was processed in a facility that processes wheat. For example, Amy's "gluten free" line made me sick. No big surprise, since Amy's "gluten free" products are processed in a facility that processes wheat. Since this labeling is voluntary, I believe the point that we are often taking a risk is a valid point. This is why I like to be extra careful and call the manufacturers, even when I can't find a risky ingredient on the list.

I feel like my life would be much easier if some of that labeling was required. And I don't think there is anything wrong with people wanting those kinds of labels for gluten and significant allergens.

I believe people do have varying degrees of sensitivity, as well. My dad and I are both celiacs and we shared a gluten free pizza. I got really sick; he didn't. (This was in a restaurant that also serves regular pizza.) Therefore, I don't put a lot of stock in arguments like: "A bunch of Celiacs eat it all the time and don't get sick." That doesn't guarantee that it is safe for everyone. Also, the risk of cross-contamination isn't a guaranteed presence of gluten every time. Playing with cross-contamination risks is like playing Russian Roulette. You don't get the bullet every time.

I don't think there is a problem with people erring on the side of caution, even if this means they are unnecessarily afraid of things that won't actually hurt them. This is our health we are talking about, and some people have faced serious, long-term consequences due to the damage caused by gluten consumption.

I believe we do more damage by giving false security than we do by causing people to be "overly" cautious. What does anyone stand to lose by giving up a few highly processed items (like the ones some in this discussion have argued hardly qualify as food)?

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I wish labeling was clearer, but I don't expect companies and the government to cater to my needs. I feel that I am perfectly capable of determining what food is and isn't safe for me, and the only foods I've been really uncertain about were foreign foods or really bizarre ingredients. And then I ask or do research before eating it.

You made some goods points but I think the bottom line is that whether someone has an illmess or not, Everyone deserves to know what is in their food. Everyone in America deserves to know what we are buying. They should cater to us because we are the people buying their products. It is impossible to know whether a food is healthy for anyone if the ingredients and processing method are not disclosed. Mainstream production is the reason why so many people are unhealthy now. People cannot fathom that foods on the shelf could be there if it is truly harmful for their health.

It just depends on how you look at it. I tend to see the bigger picture. If someone taught me about all the chemicals and things in my foods years ago, I may never had gotten so ill.

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Everyone in America deserves to know what we are buying.

If this is the measuring stick of things, you should most likely not buy anything in a box really ;) Whole foods really is the best way to eat.

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If this is the measuring stick of things, you should most likely not buy anything in a box really ;) Whole foods really is the best way to eat.

Yup pretty much. You cannot trust anyone these days it is a shame. You never really know what you are getting. Companies are greedy and lack values. I think the value system as a whole has been depreciated in America. It seems it used to be that you didn't give/sell anything that you would not be willing to use yourself or make something you would not feed your kids.

I believe in self-accountability but I also believe in responsibility for our neighbor, not just because we may get sued but that it is the right thing to do.If I sold a neighbor some lemonade and did not bother to tell them that I chopped the lemons on the same board I made peanut butter on, I would feel responsible if they became ill for giving them something exposed to peanuts while I know they are extremely allergic.

Companies are made up of People who sell things to People and I do not believe they should be excluded of the same values, morals and responsibilities we expect of our neighbors.

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Yup pretty much. You cannot trust anyone these days it is a shame. You never really know what you are getting. Companies are greedy and lack values. I think the value system as a whole has been depreciated in America. It seems it used to be that you didn't give/sell anything that you would not be willing to use yourself or make something you would not feed your kids.

I believe in self-accountability but I also believe in responsibility for our neighbor, not just because we may get sued but that it is the right thing to do.If I sold a neighbor some lemonade and did not bother to tell them that I chopped the lemons on the same board I made peanut butter on, I would feel responsible if they became ill for giving them something exposed to peanuts while I know they are extremely allergic.

Companies are made up of People who sell things to People and I do not believe they should be excluded of the same values, morals and responsibilities we expect of our neighbors.

The thing that sticks out, to me, with your example is that "you would know of your neighbor's peanut allergy"...how can companies "know" about the individual needs of their consumers?

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The thing that sticks out, to me, with your example is that "you would know of your neighbor's peanut allergy"...how can companies "know" about the individual needs of their consumers?

Exactly! :) That is precisely the point in full disclosure. That is why they should list everything on the label or otherwise make the ingredients, processing method and so on attainable in some way.

Even in many schools there are rules about using scented lotions or distributing foods. It is to protect against people having allergic reactions.

In high school, some of these things were banned and others were allowed but with requirement to tell that the fundraising candybar has nuts and so on.

And of course it is worth mentioning that companies Do know that there are people who are allergic to wheat or have celiac or nut allergies and such.

Edited by Razzle Dazzle Brazell
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I just wanted to say that I understand your frustration. Undisclosed gluten sources have been plaguing my life for the last year or so. I agree that food companies cannot always produce gluten-free products (and I'm not even suggesting that they change their manufacturing processes or ingredient lists), but there really does need to be better labeling of this serious allergen for those of us who are super-sensitive!

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I, like Gemini, have not really had any trouble finding safe foods. I always read every single ingredient every time I purchase a product, even if I've purchased it a hundred times before - this has saved me from a number of glutonings. I buy all of my food from the regular store aisles, not from the "specialty" aisles, with the exception of two products that I order online (bread and pretzels). I have been doing this for years with no problems, and I am severely sensitive to gluten. It will double me over in intense pain within fifteen or twenty minutes of eating. I have never purchased an item that did not list gluten in the ingredients that made me sick. But I took the time to learn how food is made and what ingredients could be a risk to me. I have no problem passing on products that I'm not a hundred percent sure about.

The issue with labeling gluten is much more complex than a lot of people realize. It's far more than just not wanting to do it or not wanting to spend money on ink. The problem is that the companies are buying whatever fillers and starch they can afford, and sometimes it's wheat and sometimes it's corn and sometimes it's potato. Requiring that they label wheat on the ingredient is a major issue because it would require that the company choose the starch or filler that they will always use, which means they are forced to always buy the same product even if the price becomes far higher. Or they can print different labels for every batch of their food that's created, but that's much more expensive than you would think. It saves everyone (including consumers) a lot of money to allow some of these things to not be marked on the label. It would be great if everything didn't revolve around money, but there's nothing we can do to change that. Pestering the companies will only result in them adding labels to all of their food that it may contain wheat just to be safe from getting hounded by gluten free advocates.

I wish labeling was clearer, but I don't expect companies and the government to cater to my needs. I feel that I am perfectly capable of determining what food is and isn't safe for me, and the only foods I've been really uncertain about were foreign foods or really bizarre ingredients. And then I ask or do research before eating it.

In my opinion, the outrageously high prices of certified gluten free products are much more worth getting up in arms about than the mainstream food producers not labeling gluten in the way we'd prefer. Rice is a cheap crop. I can get rice pasta at the local Asian store for about a dollar a box. The rice pasta in the specialty section at my regular grocery store is five to seven times that cost. That upsets me. But mainstream labeling does not.

Finally! Someone else who takes responsibility for what they eat and figuring it out for themselves, not expecting the government to babysit us and tell us how to think. ;)

Food companies are giving people in this country what they want....cheap food. Americans eat what is sold because it's cheap and tastes good to them. Having wheat so heavily subsidized in this country ensures that. So, as long as mainstream America eats the way they do, this is what will be offered. It is up to each and every individual to figure out what is healthy or not and choose accordingly. You are going to have to pay more to eat this way but I always feel it's an investment in health.

Gluten is not undisclosed in foods, unless it happens to be barley as a sweetener and then you have to learn how that is represented on the label. If I can figure all this out myself, anyone can. American Celiacs, for the most part, are not being poisoned by food companies due to hidden gluten. Sure, there are CC risks but that is going to happen in any country where food is prepared outside the home. I don't eat the vast majority of mainstream food and that is why I recovered so well. Educate yourselves and you'll be far better off than expecting the government to do it for you.

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Educate yourselves and you'll be far better off than expecting the government to do it for you.

But what happens if companies start to deliberately hide what is in our food, and the government does nothing about it? They're already doing it with GMOs. It's no secret that the FDA is controlled by corporations, and not the consumers it's supposed to represent. The ONLY reason the USA doesn't have the same stringent standards as the EU is because of corporate control over the government. Without speaking up about it, it may only get worse.

Sorry to sound like a conspiracy theorist, but after growing up in Europe I'm disgusted with the food labeling standards in this country. There is no legitimate reason why they can't be improved.

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Well said, kittty. ;)

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really don't see that is that big a deal changing the labels on food to include a statement about gluten "this food contains gluten", "this food may contain traces of gluten". I for one am very thankful that I live in a place that has labels like that on all food made in this country.

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