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Being Celiac In America Is Unacceptable!
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Hey all,

This is long, but I believe it is deeply important. Please consider taking the time.

I've been a constant guest on the boards here since I was diagnosed this last February. I'm 22, and my symptoms are a terrible neuropathy and even worse joint pain. Since I began to use these boards, I've found the encouraging attitude, solid advice, and diversity of experiences to be very helpful in my difficult journey. Thank you for participating in this community, it is a wonderful one. I feel bad that I get so much out and put so little in in terms of posts.

It bothers me that I don't get much of a sense that others see this as an issue of justice, as I do. If 1 in 133 Americans are indeed Celiacs, we deserve the status given to the primary allergens. Every packaged product should have an unambiguous label. And we shouldn't accept anything less. Processing food products on exclusive product lines is not that difficult; companies already do it all the time to avoid contamination with the common allergens, and accurate labeling is even easier. I have been unnecessarily contaminated several times by products that could and should have been gluten-free or at least labeled. I hear from so many Celiacs that "we just have to be totally careful and buy different (almost always much more expensive) versions of all sorts of everyday products," and it's just absurd. No one should have to make phone calls before buying all sorts of standard products in grocery stores. It should be obvious No one should have to suffer for weeks because they made a tiny mistake, and we all know that would happen much more rarely if our labeling wasn't dependent on the voluntarism of corporations, which is a joke. Sure, we should all just eat more vegetables instead, but we have the right to choose, and the right to make informed choices.

Before I was diagnosed, I attended some sessions and volunteered on the anti-GMO issue, and I learned that historically, pressure from only about 10-15% of a given food market has led to major shifts in the past. While we don't represent that much, I think that food companies are in many cases conscientious, and that we could be doing so much more to make ourselves known.

I am committing myself to call two companies, Kraft and Kroger, that have both hurt my body severely, in Kroger's case by having a somewhat (not entirely) deceptive gluten-free list and Kraft by selling gluten-contaminated cottage cheese. I'm furious, and I'll politely let them know every day for awhile that I wish they'd make their products gluten-free or labeled.

I think we should all be doing this. Just trying to struggle through for ourselves leaves us all weaker and vulnerable to the whims of people whose legal responsibility is to maximizing profits, not the welfare of others. Asking the corporations to be nice and always label isn't enough, and asking the government to regulate isn't enough, either. We should work together to call companies and exert pressure. I believe that celiac.com's boards should have an entire section devoted to action to raise awareness and make the world a safer place for us. Thoughts?

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I'm curious. How did you find out that the Kraft cottage cheese was gluten contaminated?

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Hey all,

This is long, but I believe it is deeply important. Please consider taking the time.

I've been a constant guest on the boards here since I was diagnosed this last February. I'm 22, and my symptoms are a terrible neuropathy and even worse joint pain. Since I began to use these boards, I've found the encouraging attitude, solid advice, and diversity of experiences to be very helpful in my difficult journey. Thank you for participating in this community, it is a wonderful one. I feel bad that I get so much out and put so little in in terms of posts.

It bothers me that I don't get much of a sense that others see this as an issue of justice, as I do. If 1 in 133 Americans are indeed Celiacs, we deserve the status given to the primary allergens. Every packaged product should have an unambiguous label. And we shouldn't accept anything less. Processing food products on exclusive product lines is not that difficult; companies already do it all the time to avoid contamination with the common allergens, and accurate labeling is even easier. I have been unnecessarily contaminated several times by products that could and should have been gluten-free or at least labeled. I hear from so many Celiacs that "we just have to be totally careful and buy different (almost always much more expensive) versions of all sorts of everyday products," and it's just absurd. No one should have to make phone calls before buying all sorts of standard products in grocery stores. It should be obvious No one should have to suffer for weeks because they made a tiny mistake, and we all know that would happen much more rarely if our labeling wasn't dependent on the voluntarism of corporations, which is a joke. Sure, we should all just eat more vegetables instead, but we have the right to choose, and the right to make informed choices.

Before I was diagnosed, I attended some sessions and volunteered on the anti-GMO issue, and I learned that historically, pressure from only about 10-15% of a given food market has led to major shifts in the past. While we don't represent that much, I think that food companies are in many cases conscientious, and that we could be doing so much more to make ourselves known.

I am committing myself to call two companies, Kraft and Kroger, that have both hurt my body severely, in Kroger's case by having a somewhat (not entirely) deceptive gluten-free list and Kraft by selling gluten-contaminated cottage cheese. I'm furious, and I'll politely let them know every day for awhile that I wish they'd make their products gluten-free or labeled.

I think we should all be doing this. Just trying to struggle through for ourselves leaves us all weaker and vulnerable to the whims of people whose legal responsibility is to maximizing profits, not the welfare of others. Asking the corporations to be nice and always label isn't enough, and asking the government to regulate isn't enough, either. We should work together to call companies and exert pressure. I believe that celiac.com's boards should have an entire section devoted to action to raise awareness and make the world a safer place for us. Thoughts?

I hear what you are saying but what you expect or want to happen just may not be totally feasible. It all revolves around money and to have the major companies all provide dedicated lines for Celiacs costs money, which in turn would drive up the price of food and make the rest of the population without Celiac pay a lot more for their food......which isn't going to happen. The demand for cheap, non-gluten-free food is far greater than the demands of the Celiac population so you can see where this is going. Unfortunately, the world revolves around money these days and yes, it is aggravating.

I have to wonder why some have so much trouble finding gluten-free foods they can eat when many who have this disease know it's a matter of the learning curve?

I have had no trouble sliding into this diet and the longer I have at it, the better I get at it. You may not have been hit with gluten CC at all. You may have other sensitivities. Cottage cheese is a heavy dairy hit and many, including myself, would have trouble with cottage cheese. It can produce all the same symptoms as a gluten hit so it could be entirely possible that this was your problem with it. I have never heard of any Celiac getting glutened by cottage cheese but I know you can never say never, either.

We may get lucky if many more people are diagnosed and the numbers and demand go up but that may be a long way off. I have to admit that I am having no troubles with finding great food I can eat safely but I also live in a part of the country that caters heavily to Celiac Disease. Awareness is high and I am grateful for that.

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MOST importantly, I'm not suggesting all food that can be be made gluten-free. I'm suggesting labeling! All I think is that I should know. I should have the right to know whether something will poison me without calling every company about every product. On the other end of the line, the Kraft representative had easy, accessible information that his product was poisoning me and hurting my body, and I didn't. I'm not talking about a big expenditure. The cottage cheese should have said "Contains: Milk, Gluten," rather than just "Contains: Milk." The distinction is huge for us.

I don't get CC symptoms, nothing changes. I called Kraft on an impulse even though my dietician and most sources online say not to worry about plain dairy, and they told me it is made with a barely additive. Argh. I know about other sensitivities, and I may have them (though the damage to my digestive system was only moderate, so I doubt it, as do my doctors and other Celiacs I've talked to). Elimination diets haven't helped me yet, though I try them every few months for a few weeks.

Gemini, this is the problem. It isn't easy for people to make the adjustments, which is why so many people on this board complain of CC and the suffering that comes with making small mistakes, and actually, things don't have to be the way they are. Europeans have a far easier time finding gluten-free food, according to everything I've read and the experience of a family I know that does mission work in Italy and has for over a decade with two Celiac children (and plenty of traveling all over Europe).

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MOST importantly, I'm not suggesting all food that can be be made gluten-free. I'm suggesting labeling! All I think is that I should know. I should have the right to know whether something will poison me without calling every company about every product. On the other end of the line, the Kraft representative had easy, accessible information that his product was poisoning me and hurting my body, and I didn't. I'm not talking about a big expenditure. The cottage cheese should have said "Contains: Milk, Gluten," rather than just "Contains: Milk." The distinction is huge for us.

Please post the actual product that you think has a barley additive as I have never come across this in the 7 years I have been gluten free. I want you to know I am not trying to be argumentative but I think your problem has more to do with the learning curve and understanding what is feasible for a company to do. Once you educate yourself to the intricacies of the gluten-free diet (I admit, for some, this is going to be difficult if they don't have much of a food background) you should not be making small mistakes very often at all. I go a year or 2 without being glutened and I am using the same system as you are. You should also not have to call a company on every food, once you learn the ropes. Kraft foods will not guarantee that their products are 100% gluten-free and no one else will either, unless they go the extra mile and source all their products to be gluten-free and have a dedicated, certified facility. It's a liability problem in the US but it also does not mean there is gluten in the food. Cottage cheese is naturally gluten-free but if there are additives that make it a non-gluten-free product, please enlighten me because I really would like to know what you found.

I don't get CC symptoms, nothing changes. I called Kraft on an impulse even though my dietician and most sources online say not to worry about plain dairy, and they told me it is made with a barely additive. Argh. I know about other sensitivities, and I may have them (though the damage to my digestive system was only moderate, so I doubt it, as do my doctors and other Celiacs I've talked to). Elimination diets haven't helped me yet, though I try them every few months for a few weeks.

When were you diagnosed? If you have not been gluten-free long, then your digestive issues may be just a matter of more healing time. You do not heal overnight and many foods can and will bother people, whether they contain a gluten component or not. Yes, I agree, this can be a royal pain in the butt trying to figure it all out.

Gemini, this is the problem. It isn't easy for people to make the adjustments, which is why so many people on this board complain of CC and the suffering that comes with making small mistakes, and actually, things don't have to be the way they are. Europeans have a far easier time finding gluten-free food, according to everything I've read and the experience of a family I know that does mission work in Italy and has for over a decade with two Celiac children (and plenty of traveling all over Europe).

I have been to Europe about 12 times over the past 20 years and I know the gluten-free food situation there.......at least for the past 7. To be honest, I don't find their labeling that different than ours. They have some foods that are labeled gluten-free, like here in the States but they also allow wheat starch to be used in the gluten-free diet and that is not allowed in the States. I still have to read labels in Europe to see if I can eat something. I have yet to see any label in Europe that warns of CC but I haven't seen every label in Europe. What Italy does better is they have the best gluten-free pasta going and I actually buy it from an importer here in the States. I still use the same practices in Europe that I do in the States. I think the availability and knowledge of Celiac differs greatly depending on where you live in the States and that may be the problem.

You will figure this all out with time and it does take time for everyone. I have to admit you are talking to someone who slid very easily into the diet and never had a problem sticking to it. But I nearly died from Celiac by the time I was diagnosed so, quite frankly, I am just happy to be here still.

I have horrific symptoms when glutened so that does make it easier for me to be good. Maye if you are looking for a specific product, ask here so we can help you make good choices. But, please, tell me which cottage cheese contains a barley additive because you would be doing everyone a favor if it's true!

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This is from Kraft's website: http://www.kraftrecipes.com/healthy-living-ideas/Articles/food-allergies/glutenfreefoods.aspx

I have never had any problems with Kraft products and I trust them completely.

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Kraft clearly lists any gluten if they know it has it. Kroger has been very conscientious for many years. You're actually complaining about two pretty good companies.

richard

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The worst is yet to come.

Fox News ran an article on their website this week regarding gluten free.

The tenor of the article was that gluten free is just a fad, a trend. Meanwhile testing in the UK has produced gluten intolerance levels at 1 in 4.

I looked on Fox News to see if I could grab that article and didn't see it, but I noticed other articles that can be traced back as frequent symptoms by many celiacs.

My doctors never suggested testing for celiac. I had all the symptoms and saw the same doctors for years.

What we are up against is companies like Conagra, ADM, Tyson's, and a dozen others. These companies own the political system.

I feel lucky. I know these companies are poisoning their customers. I'm no longer one of the lemmings.

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Ron, there are many of us who consume products made by these companies without a problem. Since you are a fairly new member, perhaps you have intolerances to ingredients in some of these products. When we first go gluten-free, our bodies can be pretty wonky and it's hard to pinpoint exactly what zapped us.

I do get pretty tired of hearing of celebs who are getting on the gluten-free bandwagon thereby making it seem like it's the latest fad diet when we have no choice. Perhaps you would be better off right now by sticking with whole foods that you prepare yourself. I know it's a pain in the butt, but at least you could control the ingredients you use to prepare foods. Just a thought...

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There are so many levels of sensitivity to differing amounts of gluten. There are so many different levels of severity of reaction. It makes it very difficult to come to a consensus about what is safe and what isn't. Add to that the fact that there is a lot of money to be made by the food industry, and we have a complicated equation.

I don't know the answer. I have managed to figure out what works to keep my family and me healthy. I'm glad of that.

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There are so many levels of sensitivity to differing amounts of gluten. There are so many different levels of severity of reaction. It makes it very difficult to come to a consensus about what is safe and what isn't. Add to that the fact that there is a lot of money to be made by the food industry, and we have a complicated equation.

I don't know the answer. I have managed to figure out what works to keep my family and me healthy. I'm glad of that.

While I don't completely disagree with what you say, if the vast majority of Celiacs can use products from these companies with no problems, then we can safely assume there isn't gluten in the food. This has been overblown. Many people have additional problems

that will cause a reaction that has nothing to do with Celiac and we don't need people erroneously saying there is gluten in cottage cheese. I am pretty damn sensitive myself and have eaten foods from these companies with no reaction. So haven't many, many other Celiacs. Let's not confuse people with this again. If there are those waiting for a certified, written guarantee from companies, it isn't going to happen. That doesn't mean there is gluten in the food.

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This is a problem that has plagued me as well and I support your view mennoknight, I believe what you do, the companies should respect this as an allergy that holds as much importance as any other. Considering that it is in the top 5 of allergies worldwide this should not be too much to ask for.

There is no real reason behind using wheat in any product and not disclosing it to the public. I do not care if it is considered "gluten-free" because there are less than 20 parts per million, I want to know if there is any in it at all. Just 2 examples,companies do not list on their products if the caramel color that they use is one of the 5 processes that use gluten, or what their "spices" include. Having a Culinary background, I feel that I can say without a doubt that it is poor choice to not keep the consumer informed, since they know exactly what is going into their products. We do not put arsenic in our bodies because even the tiniest amount does significant damage, and most likely death. Botulism is another, when you are so sensative that even the certified "gluten-free" (less than 20 parts per million) still gives you a reaction, It is VERY important to know all sources in your food.

Gluten does bodily harm every time you introduce it into your body, and that is the information that needs to become common knowledge. Right now I am going through a reaction because of poor labeling on a package, so I feel for you MEN... When the food industry recieves the same level of serious testing as the pharmacutical companies, and is required to disclose all ingredients, additives, derivitives, that will be the only time that people with any allergy will be free of the chance of becoming ill. Make no mistake there are rules set forth in the industry about how many people can become ill before a problem is resolved, look up sometime how many bugs are allowed to be in your cereal!

The thing is that until the gluten free community makes a stand and forces the issue, we all will have this problem. I was born with this disease, and will die with it, but by no means will I allow a company to poison me thereby shortening my life, because they want to save their secret recipe or a few dollars a year in ink. We should not be so complaiscent, we gluten intolerant and celiacs are a much much larger group than the information out there suggests, since the only way to get a true positive is to be tested during a reaction, or to have a biopsy. Stay Strong!!! Keep others informed!

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I wish the moderators on this board would clarify what the official editorial stance is here towards improved labeling laws in the United States.

Either, Yes, they would like to see them, or No, you are wasting your time here if you expect advocacy for less deceptive labeling.

My definition of "improved" is different than what the Codex stuff is in Europe, and different than what I have seen the FDA toying with as they thing about "getting a round tuit" .... someday, which is taking Codex and actually messing up our voluntary system so it's worse.

This thing with the unlabeled gluten in prescription medications (esp. those taken by celiacs frequently, such as thyroid meds) has just got to stop, for example.

I can get no clear answer from anyone in the GMO/scientific world that they would ban putting barley or something else with triticum family gluten into rice, which is absolute insanity, from a safety standpoint for the food supply for up to 1/3 of the world which COULD go celiac. Organics have already been seriously compromised by the rules for letting certain animal feeds become GMO's, so now "organic" has been redefined by the GMO breeders, by stealth.

I am literally sick of just one or two people announcing that just because they can consume a product, it must be gluten free enough for everyone else. I have been trying to avoid gluten for far longer than some of the people saying this, I believe I'm more familiar with my personal reactions to it than they are, and there is nothing more miserable than getting randomly hammered badly by an item that previously was passable and supposedly naturally gluten free, according to the manufacturer's own online and label FAQ on the last package. And it does happen.

I'm not into bashing Kraft or Kroger here, why should I, they are not manufacturing for our specialty market, and they seem to do a pretty good job, but of course, are not perfect. But there are plenty of examples of other foods that bear some sort of American 'gluten free' label that turn out to have significant amounts of cross contamination or just what could be called "labeling lapses." For one example, I had to switch from a supposedly gluten free labeled peanut butter to one which does not have the label, but which is much more likely gluten free, because I was reacting to the "gluten free" one, which, of course, turned out to have "issues" with shared line contamination. I was using a jelly at one point, that ended up recalled because the dextrose in it had undeclared wheat. Yes, even PB&J can be screwed up. :angry:

We do have other participants from other countries here, said countries which have somehow managed to cope with labeling foods as gluten free. Would you also advocate that they just turn their rules off, and descend into the free- market chaos we are being told to accept ?

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I am literally sick of just one or two people announcing that just because they can consume a product, it must be gluten free enough for everyone else. I have been trying to avoid gluten for far longer than some of the people saying this, I believe I'm more familiar with my personal reactions to it than they are, and there is nothing more miserable than getting randomly hammered badly by an item that previously was passable and supposedly naturally gluten free, according to the manufacturer's own online and label FAQ on the last package. And it does happen.

And I am literally sick of people who come onto this forum and proclaim that the whole food industry is trying to poison them with imaginary gluten. That they cannot figure out what is safe to eat and what is not, after years of being gluten free. This is not rocket science. Good God, people, it's a wonder you leave your house everyday!

No one is stating on here that just because they eat something, it must be safe for everyone else. But it's nice that you try and accuse them of that. Keep it up and you'll have all the newbies thinking they can't trust any food and everything is contaminated with gluten, which is nonsense. You have to learn to navigate the gluten-free world without requiring that everything be labeled for your convenience, just because you don't want to use your brain. It isn't going to happen any time soon because it's a money and liability issue and that's reality, whether you like it or not.

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I wish the moderators on this board would clarify what the official editorial stance is here towards improved labeling laws in the United States.

Okay, here you are:

There is no official editorial stance regarding improved labeling laws in the United States. This not an advocacy board with a political agenda. The board is to educate and inform. Our sole agenda is celiac disease awareness.

Each individual moderator, like every other board member, may have and may express a personal opinion.

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Everyone may have and express an opinion, but let's keep in mind Rule #1 please.

Rule #1-Do not be abusive or otherwise out of line towards other board members.

Show respect for each board member, no matter what you think of their views. This is not a place to quarrel.

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Our family moved from America to Australia, and it has been fabulous. I appreciate the more stringent labelling and inspections in Australia. And best of all is the abundance of "no detectable gluten" food that can be found in so many places here. I really hope that Australia maintains their current standards and that other countries follow their lead.

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I just wanted to add that if x-con is your major complaint, it isn't any better for people with allergies. The "May contains" and the "processed in a facility" label is voluntary. 100% voluntary. People with allergies have to call all the tie so this isn't just a Celiac issue.

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Interesting thread...

Personally, I get far "more" out of these discussions than I do with the nicey-nice-politically-correct ones (I don't feel like I can really trust what's being said in the latter)...

While I agree that better labeling would help some people, it would not others... I wouldn't trust it... Being knowledgeable is the best, imo.

Standardized/generalized is part of the problem, isn't it? Isn't that why the medical community is struggling so hard with understanding and dx gluten intolerance?

Btw, I'm going to agree with Gemini on the liability issue... If regulation mandates are implemented that are too restrictive (etc), you're, often, likely to find that companies will back off....even from processes that were being done voluntarily...mandates can become cost prohibitive...

Easy isn't always easy...nor is it safe, imo...

With all of that said, I think the food industry has come a long way...others, not so much (i.e. pharmaceuticals, body products, etc)...

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I think so much is the "diversification" of the food industry. If XYZ ONLY made Food A, there wouldn't be all the x-con issues. You would buy X from one place, Y from another and Z from the other.

It is one of the reasons I like companies who "specialize" in one or two things, less risk. We deal with far more than just gluten though.

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I have an entirely different take on this.

I think much of what's on the supermarket shelves today should not be labeled "food". I pulled up the ingredients for a couple Oroweat products. Just bread...right? Whole grain goodness...right?

Whole Grain & Flax

Ingredients:

WHOLE WHEAT FLOUR, WATER, SUGAR, WHOLE FLAXSEED, CRACKED WHEAT, WHEAT GLUTEN, RYE, YEAST, SALT, YELLOW CORN GRITS, SOYBEAN OIL, MOLASSES, EXTRACT OF RAISINS, BROWN RICE, OATS, CALCIUM PROPIONATE (2) (PRESERVATIVE), SODIUM STEAROYL LACTYLATE (4), MENHADEN OIL (3), TRITICALE, MONO- AND DIGLYCERIDES, CALCIUM SULFATE, BARLEY, FLAXSEED, MILLET, MODIFIED CORNSTARCH, SOY PROTEIN, SOY LECITHIN, AZODICARBONAMIDE(1).

Hamburger Buns (8 CT)

Ingredients:

WHOLE WHEAT FLOUR, WATER, SUGAR, WHEAT GLUTEN, YEAST, WHEAT BRAN, SOYBEAN OIL, SALT, CALCIUM PROPIONATE (PRESERVATIVE), SODIUM STEAROYL LACTYLATE, CALCIUM SULFATE (5), MONOGLYCERIDES (6), ASCORBIC ACID (DOUGH CONDITIONER), SOY LECITHIN, AZODICARBONAMIDE, DEGERMED YELLOW CORNMEAL, SESAME SEEDS

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

(1)

(2)

(3) fish oil

(4) (keeps 'em soft)

(5) - gypsum, drierite

(6)

Doritos? mmmm. Their website doesn't even let you copy the ingredient list.

Cheetos? Zoiks!

Are Pringles food? Or a synthetic conglomerate?

Velveeta?

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. If everything labeled "food" contained only ingredients recognizable as food, I think we'd have a lot less trouble with things like contamination, and hidden gluten.

Climbing off the soap box now.

Carry on.

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

Boy, do I agree with you there Jess. Just because we are able to consume something and not keel over doesn't mean our bodies know what to do with it.

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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. If everything labeled "food" contained only ingredients recognizable as food, I think we'd have a lot less trouble with things like contamination, and hidden gluten.

You're very right with this one, I hardly ever checked out the ingredients list until my diagnosis. Once I was forced to look at everything I was ingesting, I realized just what crap I had been putting in my body. That was an eye opener, who wants to ingest things they can't pronounce? Not me! 😃😃Amazing the things you can learn when you're forced to pay attention! 😃😃

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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. If everything labeled "food" contained only ingredients recognizable as food, I think we'd have a lot less trouble with things like contamination, and hidden gluten.

I third you on that. We would not be eating mutated or genetically engineered foods that just mess up our immune systems. I am like Caselynn in that I always thought people who ate only organic were just nut cases. I never read labels until I developed sensitivities and allergies. I agree that most of our food is not food.

It is no wonder we are badly nourished and overweight in this country. It is no wonder we are developing cancer at higher rates and autoimmune conditions. Alzheimer's, ADD/ADHD, autism has become an epidemic. Yet we trust the FDA to inform and protect us from all this. These guys know artificial foods are killing us but do not reflect these things. Ultimately it is up to us to insist on healthy living and exposing the hidden poisons that have become like date rape drugs to our health.

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As for the dedicated lines, that is often just not feasible! Gluten is not an issue for me but I do have multiple food intolerances as does my daughter. We can no longer eat things that are the Walmart brand and most of the Trader Joe's things are out for us too. These things are made on shared lines. It is a ton cheaper for these companies to have their food made like this. And people want cheap food. Most people wouldn't care if there was maybe some gluten or peanut residue in their tomato sauce or canned peas. But it's not a chance we can take.

As for declaring the gluten, I do wish they would do that but... That could create additonal problems. More and more companies could just slap a "may contain" warning on their products. Even though they may be safe for a celiac to eat, there would be no way they could be sued or whatever by putting that statement on there.

We mostly eat whole foods and cook things ourselves. The few processed foods that we do eat are ones that are clearly labeled. We take no chances.

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    • This is EXACTLY what happens to me. It has twice now and both times was after both glutening episodes but once it was the day after and the other time it was a week and a half. So I'm still not sure if it's related or strange bug bites...

      Did they stop happening when she stopped being glutened? Did you decide they were definitely related? I'm really confused by this and would love to know whether to insecticide my house or....
    • Thankyou both! I was wondering if my high levels left much doubt on the diagnosis. I don't see the GI until the 15th Sep and I don't think I can stand to eat gluten in that time. If he tells me to I will do so after then. After 25 years of symptoms I don't think there is much chance of healing my bowel In a couple of weeks. I'm actually terrified of the damage they might find. But I think I will need the endo since there may be other things going on with me. So great they didn't put your son through the biopsy! Once I have a formal diagnosis I have my kids to worry about also. I can't even stand the thought of my daughter having a blood test. I think she would need to be sedated as she is so fearful and pain sensitive. My son is not yet 2 so I don't think they will test him. I'm feeling so off at the moment. I think I have some anxiety and reflux going on complicating things quite a bit.
    • My son's antibodies were 300. Based on his extremely high levels, his pediatric GI suggested genetic testing instead of the biopsy. Genetic testing can't diagnose celiac on its own but combined with such high levels, the gi dr was confident a positive genetic test would confidently diagnose celiac. He warned that biopsies are small snapshots of the intestine and can miss damage. He said this is an approach used very often in Europe but not as much in the US. What sold me on that approach was the ability to put my son directly on a gluten free diet instead of waiting three weeks for the biopsy, during which time he would continue to eat gluten and feel terrible. I'm not sure if this is more common with younger patients though (our son is two), based on the idea that he's had less time to inflict damage that would show in a biopsy? We are very happy that we immediately started the gluten free diet and chose the genetic testing. Our son got the proper diagnosis and his recent number shows a drop to 71 after only 4.5 months gluten free! Not sure if this helps. Good luck and I hope you feel better soon!
    • We have been off gluten for a while now, and symptoms return when I've allowed gluten full meals… so something still isn't sitting right with me.  Checking with her doc about seeing a pediactric GI although I'm not sure how long that will take since we live in small town America. I know she didn't get at least one of the recommended full panel tests but maybe two, can someone help clarify, or is she missing two? DGP for sure and possibly EMA? And if I understand what I'm reading in other posts that the DGP can be more accurate? Thanks Her blood panel results: Ttg ab iga <.5u/ml ttg igg <.8u/ml aga ab iga <.2 u/ml aga an igg <.7u/ml iga 61mg/dL  
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