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Holding The Fda Responsible


JodiC

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JodiC Apprentice

I don't know if this is in the right forum but here goes........

I find it interesting that so many people are being diagnosed with Celiac and or other food intolerances. Obviously, the manufactuers of food and products have the ability to alter their ingredients. Just look at Kraft foods. The majority of their foods are gluten free without comprimising taste. Celiac is being diagnosed at a huge rate and the only solution is modifying the diet. I know we can order many foods off the internet but they are expensive. To me it seems like there are alot of people out their getting rich because of our disease. Maybe there's a reason doctors don't "diagnose" Celiac. Unless you get lucky and get a really good doctor, look at the thousands of $$$ people spend to find that diagnosis.

40 years ago the food was alot healthier than it is now. Perhaps our bodies can't accept the "fake" ingredients. Maybe Celiac is a blessing of some sort. There are days when shopping can be a huge pain, but we are forced to buy products with few ingredients on the label. I also read that gluten is a neuro-toxin, an addictive ingredient.... If this is true why would the companies want to omit that from their products. We put a huge amount of faith in the people who make our food and I think they should be help accountable. How many times have you bought one package of seemingly safe food only to buy another and notice gluten in the ingredients? Did they just add that ingredient or was it there the whole time and they just got caught and had to list it?

I found it absurd that smokers were suing the tobacco companies and winning. I mean smoking is a choice and one everyone can live without. (Whether you smoke or not) Eating on the other hand is not a choice. You have to eat to live. Do we not have the right to eat food that is safe. Again, I know we can order food or go to special stores to buy it but the cost is outragous!!! I personally cannot afford to buy the majority of the food.

I believe there has to be a way to get these companies to make safe, affordable food. There are alot of us and if we band together we can make a differance. Gluten and nicotince are not too different. Both can cause cancer, both have an effect on how the brain works, both can cause harm due to secondhand contamination, both are addictive, both can be bought anywhere, etc The only differance is that there are groups protesting smoking. And winning I might add. According to them people have a right to go to any public building and not be subjected to smoke. I feel I have the right to go out and not be subjected to other people's gluten as the substance is harmful to me.

Maybe we need to start a class action lawsuit. Maybe then people who are responsible for the mess they've made of food should have to reimburse us our medical bills. This may sound way out there, but then again so was the first person to sue the tobacco companies.


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blueeyedmanda Community Regular

I am not sure suing is the way to go.....it is not the same as smoking.....

I have celiac, I watch what I eat I do not feel it is a companies fault that I have it.....maybe I missed the whole point of your post but I think you are looking at it in the wrong way.

Many people have food intolerances that make them follow strict diets, we just go and buy different food and go on with life.

So this is not how I wanted my life to turn out...but it did and things are so much better now that I am feeling better. I would never hold a company responsible just because they put wheat in their food.

Maybe I read this wrong....

BRUMI1968 Collaborator

I wonder if it would be more effective to create a special interest group or lobby of sorts, and then work directly with companies, rather than the government. The cynic in me knows that the FDA (under Donald Rumsfield) okayed Aspartame, and that's been nothing but trouble. (Previous to his appointment as the head of the FDA, he was the attorney or on the board for the company that created aspartame). Never mind the whole origin of fluoride in our water. And they are wholly influenced by corporations and pharmaceutical lobbies. Did you know there are more lobbyists for pharmaceutical companies in Washington D.C. than there are congresspersons?

But we could help influence companies. If we organized locally. For example, we have a company in my area that makes Gorilla crunch and Peanut Butter Panda cereal -- good cereals really -- and gluten free. Envirokids maybe they are called. Anyway, they are not a gluten free facility and make maybe two cereals that aren't gluten free. Folks around here could get together and convince this company that there is a GREAT market for their goods, and it would be better still if they were a gluten free facility. It would be best if the local folks could get on the influencing of the local companies, but behind them they had a national organization of celiac sufferers who could be shown as a fine market for a company's goods.

Granted, huge companies would be harder to convince. The whole reason there is gluten in so many foods is because it is used as filler, or as something to keep stuff from sticking together, or whatever. The whole reason they're using it is because whatever it is they are trying to make is slightly unnatural - is it natural to put cookies in a box and have them be good a year later? No. Then on top of that, they go with whatever is cheapest - this is why you see "may contain soy bla bla bla or corn bla bla bla"...whichever bla bla bla is cheaper right then is what is going in the food.

Frankly, the problem seems entirely too huge, because it is partly based on the idea of food as commodity, rather than as food as giver of life, or food as human right, or food as 'you truly are what you eat'.

Time will probably help. More and more people are diagnosed, making markets smaller and smaller for those folks who use gluten in their products. i don't know...just my two cents.

tarnalberry Community Regular
I believe there has to be a way to get these companies to make safe, affordable food. There are alot of us and if we band together we can make a differance. Gluten and nicotince are not too different. Both can cause cancer, both have an effect on how the brain works, both can cause harm due to secondhand contamination, both are addictive, both can be bought anywhere, etc The only differance is that there are groups protesting smoking. And winning I might add. According to them people have a right to go to any public building and not be subjected to smoke. I feel I have the right to go out and not be subjected to other people's gluten as the substance is harmful to me.

There is no solid scientific evidence that gluten causes cancer or neurologic effects on 99% of the population. And you are not subjected to it, you can go out and easily not be subjected to it. Aside from the kitchens of bakeries and some restaurants (which are private facilities and aren't 'accessible' anyway), there isn't anywhere I can't go due to celiac. There are plenty of food choices available to me and none that I am subjected to against my will.

For most people, there's nothing wrong with wheat - according to accepted science, and no one is forcing celiacs to eat wheat, or buy expensive gluten free foods. There's nothing to fight.

JodiC Apprentice

For tarnalberry..If there's nothing to fight why do you have over 6000 posts? I think we have to fight everyday for safe food and truth in labeling.

Bully4U..... You saw what I was trying to say. There should be more people fighting for safe food.

Blueeyemanda.... I blame the companies because they know what the problem is and still find loop holes to hide gluten in.

I meant with the post that awareness needs to be raised. Comparing it with smoking is the only radical thinking I have been involved in. I mean a few people have changed the air quality in numerous countries. I feel that if you have a voice and believe in something it is your duty to speak up. There are alot of opinions on this board, all are valid. Please don't attack me cause I posted something.

hayley3 Contributor

I always thought that it was the big food companies who really did in the smokers. Kind of like setting up a fake storefront so that the attention would be off of the real culprit, the tainted food and water supply.

tarnalberry Community Regular
For tarnalberry..If there's nothing to fight why do you have over 6000 posts? I think we have to fight everyday for safe food and truth in labeling.

I have 6000 posts because I've been here for a couple years asking a few questions, posting a lot of recipes, talking about a bunch of research, and offering advice about how to adapt when you're one of the 1% of the population who can't have gluten.

Companies don't have a strong business case to make 99% of their customers follow the restrictions of !% of their customers. We don't, as humans, need that sort of food anyway, so I don't see any need to fight anything, unless it's societies decision to rely on processed/packaged foods that are made for them.


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BRUMI1968 Collaborator

Not to feed the fire - but I don't think it's 99% to 1%. If 1 in 30 folks have Celiac, and even more have gluten intolerance, than the number must be more like 3%. With 290 million people in the US, that's almost 9 million people, more when you consider intolerance. 9 million customers is a lot.

I don't believe I have a right to a food environment free of gluten - mankind developed on wheat, and our country's system is highly dependent on wheat, corn, soy, and then dairy - all high allergen foods of course, in part because we rely on them so heavily -- BUT, a mass of people working toward a healthier food system, one that is not commodity based but health based, could pressure companies to use more holistic ways of producing their foods; they can focus on locally grown foods that don't require preservatives and stretchers and drying agents and the like, and MOST IMPORTANTLY, which is what we do here in the limited framework of gluten avoidance only, work on making the entire system better, instead of just listing what ingredients and foods make us sick or not sick. If someone in my area can help me find local food, or food that has not traveled that far (carbon miles), or ideas for making my own, that is highly valuable. More valuable than trying to change companies or governments or whatever.

Anyway, I'm off to watch a movie - I was just struck by the 1% and 99%, and didn't think that seemed quite right.

tarnalberry Community Regular
...

Anyway, I'm off to watch a movie - I was just struck by the 1% and 99%, and didn't think that seemed quite right.

That's what I've seen in published studies. I'm interested in seeing other references, however.

darlindeb25 Collaborator

To be honest, I think we are ok with foods for now. I think we should place our focus on the drug industry. We need drugs to be gluten free, so we can safely take medication when we need it and not worry that what we need will make us sick. There is very little regulation on the medication we take and that needs government focus for now. Just like Pfizer and Xanax recently. Telling us it is gluten free all this time and all of a sudden, telling us they never said that--THIS HAS TO STOP. There is no reason for there to be gluten in any medication. If a drug can be made just as effective without gluten, then there is no need for there to ever be gluten in any med.

We need to place our focus in this area for now. We all get sick. Many celiac's have other medical issues, especially if you went undiagnosed for years and years. If you need any kind of surgery, or need to be hospitalized for any reason, it can be a devastating situation. I was terrified of being in the hospital. I came home with a terrible case of hives and no one knows why. They tried to give me medication that they did not verify was gluten free. We need to focus here now.

Deb

blueeyedmanda Community Regular
Blueeyemanda.... I blame the companies because they know what the problem is and still find loop holes to hide gluten in.

I don't think they are looking for loopholes to fill gluten to poison us. Our bodies cannot tolerate the ingredients that others can. Some folks (not just celiac's) cannot tolerate food colorings....they are not blaming companies for using the different dyes in products.

We should look into other ways to raise awareness than to go blaming companies. I can no longer have some of my favorite foods, am I sitting here pointing at Nabisco...no, it is a way of life and I accept that. Besides, between when I got my diagnosis until this point, things have evolved greatly. There are more gluten free options and better (for the most part) tasting gluten free foods, pasta's, cookies, and breads. You see some mainstream brands labeling products with gluten free on it if the product is naturally gluten free. There are companies out there begining to see celiac and the labeling troubles and are starting to help on their own. If we start bashing the big companies, we could be taking a step backwards and who is that going help...No one.

If you want to raise awareness, you should look at other ways to maybe help educate some of these companies, express your feelings, your concerns. If you start to hold them accountable you will get no where.

Fiddle-Faddle Community Regular
I think we should place our focus on the drug industry. We need drugs to be gluten free, so we can safely take medication when we need it and not worry that what we need will make us sick.

I think you are right, but it goes much further than gluten-free meds. Yes, dluten-free meds should be available--but how many meds are really necessary? (Deb, I don't mean to imply that anything you are taking is unnecessary!)

Our whole culture revolves around the drug industry. The whole country thinks that cold medicine is a good thing for colds; many people even believe it's necessary!

The drug industry comes out with a pill or vaccine for everything, and in the blink of an eye, everybody--from doctors to patients--believes that they should take it.

Sure, some vaccines, like the polio vaccine, are most likely necessary (at least, I believe the polio vaccine is necessary), but giving babies 26 vaccines by the age of 18 months?

And giving babies Tylenol for teething, for colds, for every little fever? That's turning OFF a tool of the immune system! (They gave my kids Tylenol WITH the vaccines,even.)

It's insane. And it's all mass marketing.

Look at the flu shot (which may very well have some merit to a specific group). Fifteen years ago, nobody got flu shots. Nobody even thought about them. Then the pharm industry announced that there was a shortage, and that not everyone would be able to get one, and , by the way, this was expected to be a "bad" flu season.

Suddenly people were lining up around the block to get "their" flu shot, which they were convinced that they desperately needed to stay healthy. Nobody asked about side effects, nobody asked about preservatives or adjuvants.

And, boom, just like that, it became an accepted part of a whole country's winter routine.

Brilliant marketing strategy. Convince people first that they WANT something; then you can convince them that they need it.

And you can't watch the news or even read a magazine or newspaper without being BOMBARDED with drug ads. These are drugs which need a doctor's prescription--but they are marketing it to the consumer, who is uneducated about side effects, and uneducated about "first do no harm."

And how many of them are drugs for conditions that might be caused or exacerbated by gluten? Let's see, thyroid, diabetes, rheumatoid arthritis, fibromyalgia, IBS, ADD, ADHD, "upset tummy," "irregularity,"and the current big money-maker, acid reflux.

(And I'm sure I left off a few, so feel free to add whatever I've forgotten!)

cruelshoes Enthusiast
Not to feed the fire - but I don't think it's 99% to 1%. If 1 in 30 folks have Celiac, and even more have gluten intolerance, than the number must be more like 3%. With 290 million people in the US, that's almost 9 million people, more when you consider intolerance. 9 million customers is a lot.

I have never seen statistics that say celiac is as high as 1:30. A more generally accepted statistic is 1:133 for celiac disease, and then they say "even more have gluten intollerance" because it's harder to get a read on that number. I would be interested to see a statistic of 1:30. So it celiac disease affects about 1% of the population and there are 290 million in the US (gonna take your word on that one beause I haven't looked it up ;) ) that means that there are about 3 million. (source: Open Original Shared Link )

On the original topic, truth in labeling is something I am all for. But I'm not sure if a class action lawsuit is the way to go. I think that might do more harm than good. Companies are, however, VERY concerned with the bottom line. I think they would be much more likely to react if people simply refused to buy their products and let them know why. It needs to benefit them financially for them to react. I don't think the class action lawsuits that happened against McDonald's in the last few years regarding the infamous french fries helped those with gluten intollerance at all.

I think it might be better to raise awareness of how harmful highly processed foods are in general. If people really understood how much better whole foods are and how tasty they can be, the market for artificial, MSG laden, salty nacho things might go down.

bluejeangirl Contributor

I know the grain lobbies are among the most powerful in the government. The department of agriculture is devoted to keeping those lobbies happy and is far less interested in the impact of their policies on our nation's health. Look at the food pyramid developed by the USDA, we're told to eat grains more then anything else. You have to wonder why. My suspicious mind says corn and wheat are the two most powerful agricultural lobbies and is continues to grow with corn now being converted into ethanol for automobile.

Your also coming up against the processed food manufactures. They're all about profit margins. They can make virtually anthing out of cheap refined grains and vegetable oils. They taste great and most people can afford them. Unfortunetly people in lower socioeconomic groups buy these foods because they get the most food per dollar. The cost of fresh fruits and vegetable is 100 to 400 times greater per calorie then refined grains, sugars and vegetable oils.

Also the government still provides subsidies to farmers. I don't know alot about it other then they were started to protect the family farm because a significant part of our population worked on farms during the depression era. Today these subsidies are nearly $20 billion per year even though today less then 1 percent of americans work on farms. The two most powerful agricultural lobbies and hence the beneficiaries of these subsidies come from the corn and wheat lobbies. So the USDA food subsidies keep the real prices of grains and starches incredible low and the processed food industry transforms these commodities into extremely palatable, inexpensive foods.

Your also fighting against the medical establishment. They are still convinced dietary fat and cholesterol causes heart disease. The solution in their eyes is to remove sources of colesterol (expecially animal protein) from the diet and replace it with GRAINS and starches. This also fuels the USDA 's famous pyramid even though this recommendation is all wrong according to Walter Willett. In his book Eat, Drink, and Be Healthy. He says "The USDA pyramid is wrong, builted on shady scientific ground,....the USDA pyramid offers wishy-washy, scientifically unfounded advice....nor has it ever been tested to see if it really works" And he's chairman of the Departmant of Public Health at Harvard Medical School.

There is evidence out there that the role of a high glycemic load in your diet produces silent inflammation, obesity, and dype 2 diabeties but any maor change in the status quo would cause a political shake-up and decreased political contribution from the ag industry. This is why you won't get to far with them. They've heard it all before. They've been faced with stronger groups then celiacs with no avail.

The book I just finished was the anti inflammation zone diet by Barry Sears and most of the imformation above is from his book. I hope it helps but also sorry if it discourages you.

Gail

JodiC Apprentice

Okay, maybe the class action lawsuit was the wrong way to put it, but I think you all get what I was trying to say. Maybe we can't hold the "food industry" responsible but I believe the food all of us eat needs to change. There is so much knowledge on this board. I don't think any of us can argue the fact that we know alot about our disease. We are forced to do our own research and then educate the very people we trust with our health. (Alot of us know our doctors need help in this area)

I realize that gluten free foods have come along way, but what about the people who have this disease but can't afford to buy these foods or mainstream foods for that matter. They are the ones who then need the extra medications and supplements because they cannot afford to buy the right foods. Then they are getting glutened from that. It's a very nasty cycle. I realize that there are more non-celiacs than celiacs, but could the fact that more and more are getting diagnosed be a sign of the times? Could it be that there is a massive flaw in the way food is now being produced? I feel I owe it to my children to do all I can to make the food they eat safe. Incidently, they are not Celiacs. There have been times I have had packages of the same food and they have had different ingredients. I did call Malt O Meal once and asked why they added wheat to one of their cereals and was told it was a financial decision. They could produce more. I said that they took another food off the market for Celiacs because of this and she said that "Celiac only effects a few where they market to the majority". It's all about the profit margin and I think that is wrong. If I had another way besides diet to control this disease I don't think I would be as concerned, but all we have is diet modification.

I would love to lobby for Celiacs but don't even have a clue where to start. There may be few of us now, but I think there is going to be more and more of us in the future.

Mango04 Enthusiast
Could it be that there is a massive flaw in the way food is now being produced?

I posted this on another thread, but if you're interested in this issue, you might want to check out "The Omnivore's Dillema" by Michael Pollan. It will give you a lot of insight and equip you with knowledge to make better choices and do something about the problem.

kenlove Rising Star

This has to be one of the most interesting topics I've seen on the board. As someone fairly new to the board and celiac,

I can say there is a lot of work to be done. I had never heard of it prior to being diagnosed 2 years ago. I was a chef and teach at a culinary school and had never heard of it. That surprised me the most. Since being diagnosed, I've written a plan that will be adopted in Hawaii next year to educate all the chef students on a variety of food allergies, especially celiac. There are a lot of small actions we can all take that will spread the word. I would not be adverse to a class action suit but dont think we are there yet as celiacs. What I would work for is to support celiac groups joining with others in a suit to force truth in labeling or better labeling laws as well as campaigning for transparency in labeling.

By other groups I mean those currently fighting for better labeling laws. When the USDA permits 28 inorganic chemicals to be used when growing organic foods there is a problem. Not knowing where food comes from, especially fresh produce, is another problem. Food routes, food mileage and all these other issues connect to our issues. Working with Slow Food and other culinary groups who fight some of the large agribusiness restaurant chain concerns would also help with celiac awareness. I think there is strength in numbers and not just the 1:133 or other numbers we read abut our problem but with other groups. Perhaps working to form a coalition with some of the other groups would benefit all. Causing change on a local level in Hawaii was fairly easy once people are made aware of the numbers as well as the problems, especially true in a resort tourist environment like Kona. Building on that nationally takes much more but collectively we can do it.

Ken

Okay, maybe the class action lawsuit was the wrong way to put it, but I think you all get what I was trying to say. Maybe we can't hold the "food industry" responsible but I believe the food all of us eat needs to change. There is so much knowledge on this board. I don't think any of us can argue the fact that we know alot about our disease. We are forced to do our own research and then educate the very people we trust with our health. (Alot of us know our doctors need help in this area)

I realize that gluten free foods have come along way, but what about the people who have this disease but can't afford to buy these foods or mainstream foods for that matter. They are the ones who then need the extra medications and supplements because they cannot afford to buy the right foods. Then they are getting glutened from that. It's a very nasty cycle. I realize that there are more non-celiacs than celiacs, but could the fact that more and more are getting diagnosed be a sign of the times? Could it be that there is a massive flaw in the way food is now being produced? I feel I owe it to my children to do all I can to make the food they eat safe. Incidently, they are not Celiacs. There have been times I have had packages of the same food and they have had different ingredients. I did call Malt O Meal once and asked why they added wheat to one of their cereals and was told it was a financial decision. They could produce more. I said that they took another food off the market for Celiacs because of this and she said that "Celiac only effects a few where they market to the majority". It's all about the profit margin and I think that is wrong. If I had another way besides diet to control this disease I don't think I would be as concerned, but all we have is diet modification.

I would love to lobby for Celiacs but don't even have a clue where to start. There may be few of us now, but I think there is going to be more and more of us in the future.

Offthegrid Explorer

I personally think it should be mandatory for every food product in America to state whether it is gluten-free or not. Wal-Mart and Wegmans have taken huge strides in this effort and should be commended. But there is NO reason that EVERY product in a grocery store can't label whether it is gluten-free, may contain traces because of manufacturing, or definitely contains gluten. Merely labeling wheat does NOT go far enough.

blueeyedmanda Community Regular
I personally think it should be mandatory for every food product in America to state whether it is gluten-free or not. Wal-Mart and Wegmans have taken huge strides in this effort and should be commended. But there is NO reason that EVERY product in a grocery store can't label whether it is gluten-free, may contain traces because of manufacturing, or definitely contains gluten. Merely labeling wheat does NOT go far enough.

I agree! Wegmans is the only grocery store we really shop at, not only for the gluten free reason but their overall attitude towards celiac is always so suuportive whether you ask them about salads in their deli to other help. Love that store!

Tim-n-VA Contributor
I personally think it should be mandatory for every food product in America to state whether it is gluten-free or not. Wal-Mart and Wegmans have taken huge strides in this effort and should be commended. But there is NO reason that EVERY product in a grocery store can't label whether it is gluten-free, may contain traces because of manufacturing, or definitely contains gluten. Merely labeling wheat does NOT go far enough.

Of course that would lead to questions about every other item that someone might be sensitive to. A good start would be a mandatory/standardized grid that lists the 8 major allergens. I sometimes feel as if I need a magnifying glass to go grocery shopping.

My general concern is that if the theat of legal action becomes too great, it will become most cost effective for companies to just put "not gluten-free" on everything. Sure they'd lose some sales but face it, the 1 in 133 that is most commonly accepted is those who have it, the ones who know they have it are an even smaller percentage. Spread those across the population and it can easily cease to be cost effective to deliver to most areas.

Fiddle-Faddle Community Regular
Since being diagnosed, I've written a plan that will be adopted in Hawaii next year to educate all the chef students on a variety of food allergies, especially celiac.

Ken

Woo-HOO!!! You are WONDERFUL!!!!

Can we clone you 49 times for all the other states??????

happygirl Collaborator

There actually already is a coalition working to improve things for Celiacs. They are one of the main reasons that the Food Allergen Labeling Law was passed. Open Original Shared Link They have a huge advocacy presence, with many different groups represented.

The problem with labeling something gluten free is that we don't currently have standards for what defines gluten free.

More of course needs to be done; however, I think we should give a lot of credit to the national advocacy groups for getting the first step enacted. The proposal that was made included further looking into defining gluten free and what gluten free means. I think that the various groups are working hard. I'm amazed at how much easier it is to be a Celiac now compared to 3+ years ago when I was diagnosed...there is a lot more awareness, more companies and restaurants recognize it, and the Food Allergen Labeling law was passed. I think its pretty darn impressive.

kenlove Rising Star

Thanks! Make it 55 times, I could use the help (^_^)

Woo-HOO!!! You are WONDERFUL!!!!

Can we clone you 49 times for all the other states??????

kenlove Rising Star

Nice to know some collaborative work has been done and the food allergen law passed. Things take sometime to filter down though, especially to this island where 10 to 15% still dont have indoor plumbing and 35% or so are on catchment water systems.

I would like to see celiac / gluten-free and the related movements join forces with other food labeling initiatives that involve truth in labeling, product sources and country of origin. This is especially true for fresh produce which is seldom labeled by origin. It is, potentially a major problem for many of us with allergies/intolerance's. For example, I was glutened by a small amount of buttermilk in one of my wife's recipes. Turned out they add it to some milk in Hawaii. Sure it was on the label (ultra tiny fine print!) but the change was never announced or documented. We have a lot of labeling issues in Hawaii regarding imported produce from China being sold as locally grown. I know this happens in Chicago and other locations too. How about 100% Kona coffee from Maui Hawaii. Its also sold but cant possibly be true as we are different islands. Sure these things are illegal but without enforced blanket labeling laws nothing will change these abuses.

When all produce has to be labeled for origin or content we may gain a foothold of sorts. Guess I should say that my job for the university is to help farmers make money and become more sustainable. Many laws exist but are not enforced regarding allergies and we need to make it tougher for the abuses. Perhaps its just a more proactive awareness program which I think will come in time, especially when the rest of the around 60 year olds get diagnosed.

Sorry for running on -- its been one of those days -- make that daze..

Ken

There actually already is a coalition working to improve things for Celiacs. They are one of the main reasons that the Food Allergen Labeling Law was passed. Open Original Shared Link They have a huge advocacy presence, with many different groups represented.

The problem with labeling something gluten free is that we don't currently have standards for what defines gluten free.

More of course needs to be done; however, I think we should give a lot of credit to the national advocacy groups for getting the first step enacted. The proposal that was made included further looking into defining gluten free and what gluten free means. I think that the various groups are working hard. I'm amazed at how much easier it is to be a Celiac now compared to 3+ years ago when I was diagnosed...there is a lot more awareness, more companies and restaurants recognize it, and the Food Allergen Labeling law was passed. I think its pretty darn impressive.

ravenwoodglass Mentor

"Maybe we can't hold the "food industry" responsible but I believe the food all of us eat needs to change. "

The main issue I have with the food industry is 'truth in labeling'. I want food that is gluten free to either be gluten free by ingredients and manufacturing or to be labeled as 'made in a factory'. If it contains any gluten ingredients even below the level the government says we can take they should have to tell us and not allow the company to just leave it off the label and call it gluten-free. Personally I don't think that is too much to ask, they do it with peanuts.

I do wonder if something can be done about that. Companies should not be able to have copious lists of gluten free foods that are in reality a literal crap shoot for us to consume. Give us the info and let us choose whether to take the risk or not. Having had more than one GI bleed from a stupid bag of chips I can't say lawsuit has never crossed my mind.

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    • trents
      Thanks for sharing, Karen. Certainly a needed reminder what we already knew (and I've posted many times on this forum) but sometimes forget, namely, autoimmune disorders tend to cluster. Where one is found, you can look for others to show up eventually. The thing that is unusual in your son's case is the onset of several of them at such a young age. My sister in law, who is in her early 60's has Crohn's and struggles with constipation so I don't think that is unusual with Crohn's. If nothing else, it's the outcome of not eating much because of the pain. Now that you know what is going on with your son and the Crohn's, we hope he is beginning to improve.
    • Nathan.
      Hi there. My son is turning 16 this month. He had an endoscopy and biopsy to confirm celiac. He went gluten-free and his pain never got any better. I think it got worse. Months went by. The pain started around 7th grade. He missed a lot of school in 8th grade, and a whole lot in 9th grade. He couldn't go to school in 10th grade. All along the gastroenterologist prescribed Hyoscyamine, didn't help at all. Cyproheptadine, no less pain. Peppermint oil, ginger, Miralax, Senna. Doc said he was constipated, but I couldn't get him to have Miralax daily. Eventually he went on Linzess and no senna or Miralax. Sorry this is long, there will be a point.  We gave his school not just a doctors not, but everything, and U of M makes a lot of notes. They still turned us in for Truancy.  I didn't get him enrolled in online school fast enough.  The school would not recommend an online school and i didn't know which one to choose.  Doc thought it was nerve pain and mental. He recommended the u of m my pain program.  Nathan did so good, 3 days a week supposed to be for 4 weeks.  Never missed, always on time.   After two weeks, they discharged him. Said it was not  benefitting him.  Pain went on. I had been asking if there were any other test they could do. Ultrasound, colonoscopy. Doc said we can do it, but I don't think we'll find anything.  Finally he had a colonoscopy and another endoscopy.  Guess what, they did find something. They found a ton of tiny ulcers everywhere, from the esophagus to his rectum. They think Crohn's. I understand they didn't check for that because he was more constipated, not much diarrhea. He is getting an MRI with contrast on Sunday. Also they want him to do a cal-protectin (give a poop sample). Then an appointment on the 16th to talk about treatment. Then the probation officer on the 17th. In the meantime he is taking Budesonide extended release.  $276.00 for 30 pills, and that's with insurance. Also he was diagnosed with hyperthyroidism, Graves disease a few months ago. If it is for sure Crohn's,  it will be three autoimmune diseases. If someone is gluten-free for a month or more, and the pain is no better, don't stop looking. I was beside myself. Did they think he was exaggerating, lying? I was considering taking him to a holistic doctor, who would probably recommend Peppermint oil and ginger.  He's such a good kid. Kind of an introvert. He was on the 9th grade soccer team. He would try to go to practice and kept having to stop, the pain was that bad. Every time he ate, it didn't matter what, gluten-free chicken tenders, mac and cheese, pizza, ice cream, all gluten-free, he would eat a normal amount but stop and say, I can't eat anymore, my stomach hurts.  If anyone reads all this, thank you. I had a gut feeling, no pun intended, that he had an additional problem. They found celiac and stopped looking. If you don't feel better, keep on your doctor to check further, keep looking.   Take care, Karen  
    • Scott Adams
      Most likely cross-contamination I believe.
    • cristiana
      I think it takes different people different amounts of time, but in my own case I had pain,  bloating and loose stools for some time, exacerbated by a lactose intolerance, which eventually went.  I would say the really bad diarrhea got better quite quickly, but the bloating pain carried on for a few months, until I was told to give up lactose for a few weeks.  That helped enormously and once I realised milk and yoghurt was the cause, after a short break I went back to lactose very gradually and felt a lot better.  Now I can tolerate it well. From Coeliac UK "The enzyme lactase is found in the brush border of the small intestine. This is why people with coeliac disease can be deficient in lactase at diagnosis. Once established on a gluten free diet, the gut is able to heal and lactose digestion returns to normal. Lactose intolerance is therefore usually temporary." So if this helps your daughter, this doesn't mean you have to give up lactose forever, especially as dairy is such a good source of calcium for growing kids.   Bear in mind you should be able to reintroduce it. As for fatigue, this can be due to vitamin and mineral deficiencies,such as iron, vitamin D and B12.  Were these levels tested?  If not, I would suggest you get them done.  If your daughter is deficient in these, it is vital you address the deficiencies, and get the tests redone in a few months, particularly the iron, because too much can be dangerous.
    • knitty kitty
      Hello,   The medication in these inhalers can cause a thiamine deficiency if used by someone already low in thiamine.  We don't absorb sufficient amounts of vitamins and minerals due to the inflammation and damage done to our villi in Celiac Disease.  Even a long term strict gluten free diet may not provide sufficient amounts of vitamins and minerals.  There are eight B vitamins that all work together.  Thiamine deficiency often shows up first because our bodies use so much of it and it can't be stored very long. Thiamine deficiency symptoms can appear in as little as three days.  Without thiamine, the other B vitamins may not be able to function properly.   Thiamine is needed to clear lactic acid accumulation caused by the inhalers: Shoshin beriberi provoked by the inhalation of salbutamol https://pubmed.ncbi.nlm.nih.gov/12951730/    Significant Lactic Acidosis from Albuterol https://pmc.ncbi.nlm.nih.gov/articles/PMC5965110/ Albuterol-Induced Type B Lactic Acidosis: Not an Uncommon Finding https://pmc.ncbi.nlm.nih.gov/articles/PMC7263006/ Lessons of the month 1: Salbutamol induced lactic acidosis: clinically recognised but often forgotten https://pmc.ncbi.nlm.nih.gov/articles/PMC6964186/ An Overview of Type B Lactic Acidosis Due to Thiamine (B1) Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC10731935/   Thiamine has antifungal and antibacterial properties.  Thiamine helps keep Candida in check.  Thiamine helps keep SIBO in check.  Thiamine helps with black mold, Aspergillis infection.  Riboflavin helps fight Candida infection in the mouth. Riboflavin Targets the Cellular Metabolic and Ribosomal Pathways of Candida albicans In Vitro and Exhibits Efficacy against Oropharyngeal Candidiasis https://pubmed.ncbi.nlm.nih.gov/36625571/   Thiamine deficiency can make ones voice hoarse and can cause localized edema.  Niacin deficiency can make ones voice hoarse.  (Niacin deficiency and Thiamine deficiency can each cause irritability, agitation, and lability.) Hoarseness in pellagra https://pubmed.ncbi.nlm.nih.gov/21507655/ Hidden Hunger: A Pellagra Case Report https://pmc.ncbi.nlm.nih.gov/articles/PMC8152714/   Anesthesia can cause B12 deficiency.  B12 deficiency can show up as mouth sores and geographic tongue, diarrhea, and dementia. Vitamin deficiency, a neglected risk factor for post-anesthesia complications: a systematic review https://pmc.ncbi.nlm.nih.gov/articles/PMC11823251/ Neurologic degeneration associated with nitrous oxide anesthesia in patients with vitamin B12 deficiency https://pubmed.ncbi.nlm.nih.gov/8250714/ Subacute combined degeneration of the spinal cord following nitrous oxide anesthesia: A systematic review of cases https://pubmed.ncbi.nlm.nih.gov/30144777/ The Effect of Vitamin B12 Infusion on Prevention of Nitrous Oxide-induced Homocysteine Increase: A Double-blind Randomized Controlled Trial https://pmc.ncbi.nlm.nih.gov/articles/PMC4052402/     Eating a diet that is heavy in carbohydrates can precipitate a thiamine deficiency.  As the amount of carbohydrates consumed increases, additional thiamine is needed, otherwise the carbs will be stored as fat.   Thiamine deficiency disorders: a clinical perspective https://pmc.ncbi.nlm.nih.gov/articles/PMC8451766/   Hiding in Plain Sight: Modern Thiamine Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/   The deficiency symptoms of some of the B vitamins cause gastrointestinal symptoms that resemble the same symptoms as when being glutened.   Thiamine deficiency can present as vomiting, diarrhea and abdominal pain (Gastrointestinal Beriberi).  Niacin deficiency can present as diarrhea (Pellagra = diarrhea, dermatitis, dementia, then death ).  B12 deficiency can present as diarrhea or dementia.  Not everything is caused by hidden gluten.  Gluten free processed foods are not required to be enriched with vitamins lost in processing like gluten containing foods are. Blood tests are not accurate measurements of vitamin levels, but do talk to your doctor and nutritionist about supplementing with the eight B vitamins, Vitamin C, the four fat soluble vitamins and minerals like magnesium.  Your physician can give you a shot of B12 before anesthesia administration.   By the way, Celiac Disease genes have been traced back to having originated in Neanderthals.  I'm not a singing teacher on the net.  I earned a degree in Microbiology after studying nutrition because I wanted to know what vitamins are doing inside the body.  I've experienced nutritional deficiencies myself. Hope this helps!  Keep us posted on your progress!
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