NationStates Jolt Archive

For those of you that don't know (and that would be almost all of you) my daughters have an autoimmune disorder called Celiac disease. Basically when they eat gluten (a protien found in wheat, rye, barley and oats) their immune system attacks their body. Even a very small amount of gluten can harm them.

The FDA is thinking about making new regulations on what could be labeled gluten free (right now there are basically no restrictions at all, and I have to read the entire ingredient statement on everything they eat and most times I have to call the company) The list of ingredients that may contain gluten is about 90 different ingredients right now and I have to remeber all of them, there are even some ingredients (modified food starch) that may or may not have gluten so I have to call the company every single time (because they can change recipe without notice) This takes up about 15 extra hours a week of my time.(checking out all their food)

Now to the hypocrite part. I wrote just about everyone I could find who would listen speaking out against these new regulations. Why?

The USA is considering the creation of a dual definition for the term "gluten free." For example under 20 ppm for naturally gluten-free ingredients, AND under 200 ppm for ingredients that are rendered "gluten-free," such as Codex Alimentarius quality wheat starch.

The other people in the Celiac support group have called me a hypocrite because any kind of gluten labeling regulations would "further education about the disease"

I am not worried about educating people about the disease, I am worried about people reading that something is gluten free and eating it and getting sick.

There is enough gluten in 1/48 of a slice of bread to seriously damage my daughters intestines, it can take up to 3 months to heal, and during that time they are unable to absorb any nutrients from their food. Basically they starve no matter how much they eat.

So, should I back off from my battle so that there will be publicity for celiac disease? or should I try to get the definition of gluten free to actually mean NO GLUTEN!!!!!!!!!!!

I am just wondering if my crusade is unwarranted...............

*it is important to know that Codex Alimentarius quality wheat starch is not truely gluten free it is just low in gluten and will still harm someone with celiac disease.

Its not hypocritical. It is perfectly natural to assume that if someone labels something "gluten-free" that there might not be any, you know, gluten in it. Thats like mee deciding that it is ok too distribute apples filled with razor blades tomorrow night because most of the apple doesn't have a razor in it.

...Should I try to get the definition of gluten free to actually mean NO GLUTEN!!!!!!!!!!!
Yes. Yes, you should.

I wouldn't have a clue why they'd want to put "gluten free" stickers on stuff other than for people who can't have it - and for those people you'd want there to be no gluten at all.

So I say: Fight! This is probably lobbying groups fighting for money again, and you shouldn't shy away it.

I recently stayed at my gf's place down in Southern Ontario, and her dad's gf has this severe gluten allergy thing. It was totally crazy! I'd never heard of it, but we had to make sure not to contaminate anything that was gluten free, and we always had to make sure the kitchen was REALLY clean, so there was no stray flour around. Even a tiny bit could cause a major reaction.

I don't know how common the condition is... I can't imagine terribly, because I'm betting a lot of people who have it probably die early. If something as common as flour can kill you, I figure it doesn't bode well for chances of survival.

But I certainly agree that Gluten Free should mean NO gluten. At least give these people a chance... if you put Gluten Free on stuff with gluten in it, you're just helping these people to die young.

I think there are good points to both sides of the argument. My Opa is allergic to gluten, and I avoid it, so I can relate to the desire to have it eliminated.

You are definitely not a hypocrite. Whoever accused you of that does not understand the meaning of the word.

There are a lot of foods that have claim to be free of a substance but still have some of it. I think a step in the right direction would be for all labels that say they are gluten free - whatever the cutoff - to specifically state on the label exactly how much gluten is in the product, from 0.1g to whatever. This way, not only do you know for your daughters, but others with mild intolerance to gluten (myself included) would know more too.

Keep up the fight. The FDA needs to be presented with as many views as possible to make the best decision.

I recently stayed at my gf's place down in Southern Ontario, and her dad's gf has this severe gluten allergy thing. It was totally crazy! I'd never heard of it, but we had to make sure not to contaminate anything that was gluten free, and we always had to make sure the kitchen was REALLY clean, so there was no stray flour around. Even a tiny bit could cause a major reaction.

I don't know how common the condition is... I can't imagine terribly, because I'm betting a lot of people who have it probably die early. If something as common as flour can kill you, I figure it doesn't bode well for chances of survival.

But I certainly agree that Gluten Free should mean NO gluten. At least give these people a chance... if you put Gluten Free on stuff with gluten in it, you're just helping these people to die young.
celiac disease has many degrees and affects about 1 in 133 people
anaphylaxis is very rare something like 1 in 15,000
I still have to worry about cross contamination though, one time my 2 year old accidentally touched a peice of macaroni (with gluten) and she broke out in a rash all over, and had "bathroom problems" for 2 weeks. I felt soo bad.:(

This whole problem depends on whether or not the levels they allow are harmful. If they are, then the FDA has no clue what it's doing, and while you're right to protest the new rules, it would only be a short-term solution as the FDA doesn't know what sort of rules to create. It can't make stuff 100% gluten free as that would most likely be physically impossible, but it can make it up to whatever percentile below that is necessary. It just needs to know what that percentile is.

For those reading this thread who suffers or know someone who suffers from celiac disease, Colitis, Crohn's, or any other form of digestive syndrome/problem, your answer could be in investigating gluten. You can also check out (google) the Specific Carbohydrate Diet, which eliminates difficult-to-digest food and helps the digestive system heal. I cured myself of 8 years of lactose intolerance by following the SCD diet after only 6 months!

This whole problem depends on whether or not the levels they allow are harmful. If they are, then the FDA has no clue what it's doing, and while you're right to protest the new rules, it would only be a short-term solution as the FDA doesn't know what sort of rules to create. It can't make stuff 100% gluten free as that would most likely be physically impossible, but it can make it up to whatever percentile below that is necessary. It just needs to know what that percentile is.
any amount of gluten can harm someone who has celiac disease, the amount of harm varies from person to person. You are right that somethings will never be gluten free (like wheat bread) but many things are or can be. I am not trying to say that companies should make all their food gluten free to cater to us, just that saying something is gluten free when it isn't is harmful and the fact that the FDA would help with this type of lying makes me sick. (and my daughters literally sick)

For those reading this thread who suffers or know someone who suffers from celiac disease, Colitis, Crohn's, or any other form of digestive syndrome/problem, your answer could be in investigating gluten. You can also check out (google) the Specific Carbohydrate Diet, which eliminates difficult-to-digest food and helps the digestive system heal. I cured myself of 8 years of lactose intolerance by following the SCD diet after only 6 months!
my kids are gluten free and my husband is starting the SCD diet tomorrow for his crohn's disease. We really hope he will feel better soon. It is good to know that it has actually worked for someone ;) I was reading books about it and got scared, my girls are GF (gluten free) and that diet is restrictive enough but the SCD diet, gosh it seems like you can't eat anything (but so did the GF diet when we first started and we found lots of food to eat now)

This id your duaghters very lives they're messing with here. There's no pussy footing about it. If you need any help let me know and I'm be more then willing to assist in any way with your fight, as (I am sure) are most of the NationStates community. You can email at mailto:rotovia@rotovia.com

I wouldn't say you're a hypocrite, Smunkeeville. You're showing a reasonable and level head in this matter. I sympathise with you, as I know someone who has the same problem, and it is hard on te family because of their limited income.

my kids are gluten free and my husband is starting the SCD diet tomorrow for his crohn's disease. We really hope he will feel better soon. It is good to know that it has actually worked for someone ;) I was reading books about it and got scared, my girls are GF (gluten free) and that diet is restrictive enough but the SCD diet, gosh it seems like you can't eat anything (but so did the GF diet when we first started and we found lots of food to eat now)
I tried it during research I was doing on sucrose (sugar) and how harmful it is. The first few days were really tough, starch withdrawal is not fun, but I felt awesome after a few days, lost my developing pot belly and about 10 lbs, and never felt better.

It's true that it's restrictive, but after the initial adjustment it's not that hard. Increasing vegetable intake means you're getting more bulk and feeling more full with less food. I didn't lke giving up rice and potatoes, and it was hard giving up toast, but I really did learn to love large servings of carrots, pea, broccoli, and salads without lettuce (just cut up whatever veggies I had and eat them). I would still have milk and cheese from time to time (I disagree with her on milk, as I think moderate amounts ca be healthy). For snacks, fruit, especially dried fruit, and nuts, like cashews and almonds, are great.

My experience can be summed up as follows: Most of what we eat now is crap, empty calories with on nutritional value. When you take in only easy to digest, fibre-rich food, you need less food, get used to it, feel great, lose weight, save money, and still be able to eat steak, chicken, eggs, pork, and other protein.

Good luck to you and your family. Just a suggestion: If you could go on the diet too, your whole family could be in it together and support one another. The more, the merrier!

snip.
I'm just curious, but wouldn't it make more sense for your family (easier, less nerve-racking, more healthy) to just avoid factory-produced and processed foods? You probably have less to worry about if you buy a bag of rice than a package of rice-crackers. Maybe this would mean a larger investment in food-preparation time, but still, its more healthy to start with, and much safer for your daughters; health.

I'm just curious, but wouldn't it make more sense for your family (easier, less nerve-racking, more healthy) to just avoid factory-produced and processed foods? You probably have less to worry about if you buy a bag of rice than a package of rice-crackers. Maybe this would mean a larger investment in food-preparation time, but still, its more healthy to start with, and much safer for your daughters; health.
I avoid it as much as possibe, but there are things that have to be checked that I can't make at home, like shampoo, soap, ect. The fact that we are a very busy family and out of the house a lot makes it difficult for me to make everything from scratch too. I may be a stay at home mom, but I hardly ever get to stay at home. We go on family field trips, I help the elderly people in my family out, I volunteer at church and with other local groups, I have to drive everyone everywhere because we only have one car. I think I am actually out of the house more than I am home. Maybe if I had a travel trailer with a fridge and stove in it that would work:p but think of the gas miliage:(

I am not really worried about being able to find food, the extra 15 hours a week is very much worth it because I don't want my daughters to get sick again. When my 2 year old was 11 months she weighed 24 pounds, we started her on a solid diet and her celiac disease acted up (she wasn't diagnosed yet) she dropped down to 8 lbs by her first birthday during that month she was in and out of the hospital/ER/DR office 13 times, she ended up having complications due to still being undiagnosed and had to have surgery, and ended up on a feeding tube but still wasn't doing well so they had to put in a central line and feed her that way. They told us she was going to die, and were going to send her home to do it. (We had run up about $300,000 in hospital bills that month, a lot of it from them trying to start an IV it costs $15 a time and they stuck her over 100 times that month) I fought to find another doctor who would help her. The new doctor tested her for what she considered a "disease she probably doesn't have" and asked us if we wanted to pay the expense of it. I of course said yes, and we found out that by me putting her on a 100% gluten free diet, she would be fine. I have no problem at all checking every single thing she eats, touches, or breathes around. If it took me 100 hours a week, I still wouldn't mind. Even if this passes I am still going to triple check everything, I am worried about the ones who won't. I don't ever want someone to get as sick as Annika was, much less because of stupid politics. Everyone can't afford to make all their food fresh, they have to eat processed food. My fear is that when they do get sick, they will tell their doctor that everything they eat is gluten free and it will get overlooked and they will just die. :(
I feel that I have to fight for them.

I wouldn't say you're a hypocrite, Smunkeeville. You're showing a reasonable and level head in this matter. I sympathise with you, as I know someone who has the same problem, and it is hard on te family because of their limited income.
I have trouble with it without a limited income. A 10oz bag of gluten free pretzels is $6. (we only get them on special occasions) Tell the family that if they have a brand they really like, that if they call the 800# and tell them they are having trouble affording it a lot of times they will mail you really good cupons (we get $3.00 off our pretzels) and sometimes they will just send you free food.:D It is the store's that over price this stuff, if I ever get enough money I am going to start buying their cereal in bulk from the co. (if you buy 15 boxes you can get it at about 60% off what you would pay in the store.) I have a co-op of sorts that we are starting to buy up things in bulk and then split up our purchases. We plan to donate some to hospitals in the area too. We did a big GF food drive after the hurricanes, so that people with Celiac disease could eat too.

...should I try to get the definition of gluten free to actually mean NO GLUTEN!!!!!!!!!!!


The only difficulty I could see in trying to get such a definition enforced is in being able to understand the sensitivity of tests available for gluten. No test for anything will yield a result of 0, but instead, less than a certain amount. Even going to a doctor's office for a pregnancy test, the test for B-HCG will often be reported out as <25 mIU/ml rather than negative.

Just something to keep in mind. It's one thing to want rules to be a certain way. It's quite another to have them have the capability of living up to such standards.

The only difficulty I could see in trying to get such a definition enforced is in being able to understand the sensitivity of tests available for gluten. No test for anything will yield a result of 0, but instead, less than a certain amount. Even going to a doctor's office for a pregnancy test, the test for B-HCG will often be reported out as <25 mIU/ml rather than negative.

Just something to keep in mind. It's one thing to want rules to be a certain way. It's quite another to have them have the capability of living up to such standards.
true, but they could just label things gluten free that don't have any wheat, rye, barley, oats, or byproducts of those things. That is what I am trying for. ;)

I guess God/genetics/fate has dealt you a very nasty problem. The nature of processed food means anything could be in it with small traces.

They shouldn't use one label to mean several things.
"gluten free" should really mean no gluten.
If it's only less then 100 ppm they can call it "low gluten" or something instead.

I don´t want to jump on the band wagon, but go on for legislation, in allergy like in cancerogenity there are no threshhold values, so what is labelled X-free (substitute X for choice) should be free to the technically measurable level.

I guess God/genetics/fate has dealt you a very nasty problem. The nature of processed food means anything could be in it with small traces.
yeah, the only processed food I buy is made on dedicated gluten free lines. I worry though about the people who can't afford that food. It is hard to tell someone on food stamps to only get fresh food and never processed food. The food I get comes from stores that don't take food stamps. These people don't have the time/money to follow the diet without just getting processed foods. They are even less likely to have the time to read everything like I do, they may see gluten free and logically assume that it is gluten free. Dealing with cross-contamination is way different to me than dealing with food that contains wheat starch and saying that it doesn't contain wheat. That is lying to the consumer, and it is a lie that could prove deadly.

yeah, the only processed food I buy is made on dedicated gluten free lines. I worry though about the people who can't afford that food. It is hard to tell someone on food stamps to only get fresh food and never processed food. The food I get comes from stores that don't take food stamps. These people don't have the time/money to follow the diet without just getting processed foods. They are even less likely to have the time to read everything like I do, they may see gluten free and logically assume that it is gluten free. Dealing with cross-contamination is way different to me than dealing with food that contains wheat starch and saying that it doesn't contain wheat. That is lying to the consumer, and it is a lie that could prove deadly.

Adding to that, your food is also GM modified as well ...

your fight is definately just... i went to spend a weekend with my friend over the summer, and her father is allergic to gluten... it took us about 2 hrs to do the food shoppin (and it wasnt a particularly big shoppin trip)... sayin this it did end up being very expencive... they dont hav ne food in the house that contains gluten, which is hard on the whole family, as they all hav to check everything they buy... it seems to me that if something is said to be gluten free then it should be, and to change this in the way they wish, is the only thing hipocritical about this issue... as they will technically be going against their own advertising laws.

So, what's going on here is that the FDA is attempting to redefine "gluten free" to mean "not gluten free". Or more likely, the food industry is attempting to get the FDA to do it. After all, it's expensive to actually make gluten-free food, and that cuts in to profits, which are more important than your daughter's health to the food industry. I'd be willing to bet that the regulations also shield the food industry against lawsuits if anyone has a reaction to their non-gluten-free "gluten free" foods, so that if they make your daughter sick, you can't sue them.

This is all too common a scenario. The FDA is not in this to make sure that food is safe for your daughter to eat, but to make sure that it is safe for the food industry to claim that food is safe for your daughter to eat. This is what happens when you turn control of a regulatory agency over to the industry that it is supposed to regulate.

And people then have the nerve to call you a hypocrite. This is what our once-proud nation has been reduced to: "honesty" has been redefined to mean "hypocrisy", so that hypocrites are considered honest, and honest people are considered hypocrites. It's only a matter of time before they start accusing you of hating America.

Sorry for the cynicism so early in the morning, but at least it's honest cynicism.

:rolleyes:

They should set the standard at the lowest level at which harm can be demonstrated in humans. Period.

Oh, let this go through, the chance of getting "gluten free" to actually mean "gluten free" at the get go is slim to none. However, once the lawsuits start rolling in from relatives and Celiac sufferers about Celiac sufferers dieing or being seriously hurt by "gluten free" products, "gluten free" will be free of gluten quick, fast, and in a hurry.

Oh, let this go through, the chance of getting "gluten free" to actually mean "gluten free" at the get go is slime to none. However, once the lawsuits start rolling in from relatives and Celiac sufferers about Celiac sufferers dieing or being seriously hurt by "gluten free" products, "gluten free" will be free of gluten quick, fast, and in a hurry.

That would work also, but it means that someone gets harmed first.

And I'm sure the manufacturers will put a lot of ass-covering doublespeak in fine print somewhere on the package that says, "may contain a small amount of gluten" somewhere, so you won't be able to sue them under "failure to warn".

That would work also, but it means that someone gets harmed first.

And I'm sure the manufacturers will put a lot of ass-covering doublespeak in fine print somewhere on the package that says, "may contain a small amount of gluten" somewhere, so you won't be able to sue them under "failure to warn".
I don't think the gluten free lobby is a big monster that means some one must be harmed first, and not just some one but lots and lots of people must be seriously harmed first.

I don't think the gluten free lobby is a big monster that means some one must be harmed first, and not just some one but lots and lots of people must be seriously harmed first.

Like this:

"If a new car built by my company leaves Chicago traveling west at 60 miles per hour, and the rear differential locks up, and the car crashes and burns with everyone trapped inside, does my company initiate a recall?

You take the population of vehicles in the field (A) and multiply it by the probable rate of failure (B), then multiply the result by the average cost of an out-of-court settlement (C).

A times B times C equals X. This is what it will cost if we don't initiate a recall.

If X is greater than the cost of a recall, we recall the cars and no one gets hurt.

If X is less than the cost of a recall, then we don't recall."