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Being Celiac In America Is Unacceptable!
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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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    • I just now saw the second reply and I see what you mean. Again, the issue is that I may have to go with the gluten until close to the end of the year.

      However, an idea did just come to mind, and that is, can my primary care doctor do such a test? I had normal blood work done, but they didn't really say anything about testing for celiacs. I can get an appointment with my primary care doctor much sooner than a GI.

      When I was talking to my PCP last, I asked her what I should expect as far as testing goes or what she may have been concerned about. Her reply was about a HIDA scan for the gallbladder but also any test needed in case of IBS or Celiacs. Just the way she threw that in there like an after thought and left me hanging kinda had me worried.
    • I am not a doctor that's for sure.  So, I can't even answer your questions.  If you know you have pre-diabetes, you probably are working with a doctor.  Can you email them and ask for a celiac blood panel?   You can work on the weight loss and diabetes -- that you can handle yourself now and take action.  I have diabetes and my glucose readings are fairly normal now without medication and I'm thin.  Being overweight does not cause diabetes.  It's either autoimmune (type 1) or you become insulin resistant (type 2).  You can cut out all sugar and  processed stuff ASAP to help take action and start walking 10,000 steps (helps with the insulin resistance).    But the prediabetes is not going to kill you in the next year.  Whatever's in your gut is more likely going to get you much sooner.  But heck, I'm not a doctor and I don't even know you!    
    • Hi Steph, Yes, celiac disease can cause a myriad of symptoms and damage to the body,  Have you completed all celiac disease testing?  Usually they do the blood antibodies test first and then do an endoscopy.   You shouldn't go gluten-free until all testing is completed. Gluten is in many processed foods.  But if you stick with whole foods it is not hard to avoid gluten.  Getting used to eating gluten-free may take some time, as we need to adjust our preferences in diet.  But there are many foods that are naturally gluten-free.  Gluten is the protein found in wheat, rye and barley.  Some celiac disease organizations recommend avoiding oats also for the first 18 months of the gluten-free diet. Celiac disease impairs the ability of the body to absorb nutrients (including vitamins).  That can make it hard for the body to maintain itself and heal/repair damage.  So celiac can easily impact any part of the body. Sardines, tuna, mackeral and salmon have good amounts of vitamin D in them.  There are supplements available also, but not all are good.  You can check them at the labdoor website.  Nature Made is a good one and not expensive.  Internal damage from celiac can cause liver issues.  Those will probably clear up after being on the gluten-free diet a while. Recovery from celiac can take  months, and can be a rocky road.  The more you stick with whole foods and avoid cross-contamination issues the sooner you will heal IMHO. You may find that dairy causes problems for your digestion at first.  But it make stop being a problem after you have healed up some. welcome to the forum!
    • Will this be dangerous considering how long I have to wait for any testing? I may not even get a blood test in November but here is hoping. I just worry having to wait so long will cause serious issues, not to mention delay of weight loss which I need for the pre-diabetes. Do ulcers have a chance to cause yellow stools though? I suppose a stool test will be needed for that for any signs of blood in stools but visually it does not seem so. The biggest issue is not knowing what else could be causing the yellow stools as this would not be a diabetic or ulcer thing. And without negative signs on the gallbladder or liver, it is narrowing down the list.

      At the very least this is making me assume I can wait on a final scan of gallbladder and attempt blood tests and endoscopy if they recommend it.
    • The first step is getting a celiac blood panel.   Any medical doctor can order one.  Live near Chicago?  They are do free screenings this month (check their website).  The cost is less than $400 for the complete panel.  If you get a positive on any one of them, then you should be referred to a GI for an endoscopy to obtain intestinal biopsies.   Here's more information from a reliable source and not just some lady on the internet: http://www.cureceliacdisease.org/screening/ Having had my gallbladder removed (probably ruined from undiagnosed celiac disease, but I don't know that for sure), I would recommend a HIDA scan.  I have no idea how expensive that one is.  It's a nuclear test that checks for functionality.  Basically, is your gallbladder squeezing bile into your small intestines when those fries or bacon come down the tube.  Mine happened to actually be rotting (infected).  ER suspected appendicitis, but it was a rotten gallbladder.  I never had any stones (that's what the CT or the ultrasound can find).  I am sorry that you are ill.  Keep eating gluten until all testing is complete.  This is important.  Go gluten free now?  Here's why you shouldn't..... http://theceliacmd.com/2013/04/six-reasons-to-test-for-celiac-disease-before-starting-a-gluten-free-diet/  
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