Sometimes, The Term 'gluten Free' Makes Me So Frustrated

[T.H.]

This is more an American rant, just to warn ya'll.

I really, really find myself getting more and more frustrated by the term 'gluten free.' I think because it feels like such a deceptive term, honestly.

Most of the doctors I talk to think it means zero gluten. Most of the people who are not Celiacs I talk to think it means zero gluten. About a quarter of the company representatives I talk to about their gluten free products think it means zero gluten. And many of us start out thinking it means zero gluten, too.

We start our diet, we look at our foods, and we always ask: is this gluten free? If it has no gluten, then it must be safe, right? If this is 100% gluten free, then it's fine for us to eat.

And that's so not true.

How differently would we approach going gluten free if we were told this when we were diagnosed with celiac disease: gluten free is a legal term. It is a definition of how much gluten a product is allowed to have and still have the label of gluten free. It is usually defined by law, but we have no law that is in effect in the USA, so all companies who use the term 'gluten free' for their products are on the honor system.

How much more careful would be be, initially, if THAT'S the information we were given, instead of being told 'eat gluten free products and you'll be fine.' Would more celiacs be careful about eating gluten-free processed food in moderation if they were aware that most of it has low levels of gluten? Would more doctors be able to help their patients if they were aware that some gluten-free foods might not be as free from gluten as others?

It just feels like this label, while trying to help us, has also caused potential issues as well.

Now I'm not saying there are not good, careful, conscientious companies out there. We all have favorites that we trust, that do a good job and test their products and are very careful about gluten ingredients and cc. But how many of us absolutely trusted that gluten free label until the first time we got sick on an ostensibly gluten free product?

And how many of us might have made a few more phone calls, or checked with other celiacs about companies they trusts, if we knew more about how a product is labeled gluten free?

Like I said...sometimes, I just get really, really frustrated over this label. Wish it was more accurate (super low gluten food, LOL) so at least new Celiacs and their doctors could get the heads up BEFORE they got sick that first time, ya know?

[mushroom]

Yes, what we really need is less than 20 ppm, less than 10 ppm, less than 5ppm - a scale, instead of this meaningless term "gluten free". That way we would be able to estimate how much gluten we actually consumed in a day and whether it went beyond our own personal threshold (once we have established what that is ) It's not like we have a meter where we can measure our blood glucose and balance things out, we have to know our total gluten consumption. Right now it's just a big guessing game.

[eatmeat4good]

Yeah I agree.

I bet I would have healed faster if I had understood this point.

Now I keep it to one gluten free item a week. A slice of Udi's, a dessert, or a few cookies. Not all three in one week. I don't think they are safe enough to be eating every day. There must be a cumulative effect...the way I figure it...better safe than sorry.

People think they are getting glutened or have other sensitivities when it may be the very gluten free food that they are relying on.

Yikes. Scary.

I'm so glad you guys explain this point because it is difficult to comprehend.

[dilettantesteph]

It really bugs me when things are advertised as 100% gluten free when they may contain almost 20 ppm gluten. That's not what 100% means.

[NateJ]

Yeah I agree.

I bet I would have healed faster if I had understood this point.

Now I keep it to one gluten free item a week. A slice of Udi's, a dessert, or a few cookies. Not all three in one week. I don't think they are safe enough to be eating every day. There must be a cumulative effect...the way I figure it...better safe than sorry.

People think they are getting glutened or have other sensitivities when it may be the very gluten free food that they are relying on.

Yikes. Scary.

I'm so glad you guys explain this point because it is difficult to comprehend.

Whoa. wait a second. Udi's has gluten in it?

[psawyer]

Whoa. wait a second. Udi's has gluten in it?

We don't know. It is scientifically impossible to prove that ANYTHING is 100% gluten-free.

The best available test can detect 5 ppm and it is expensive. ANYTHING could have up to 5 ppm gluten and you could never prove whether it did.

[NateJ]

We don't know. It is scientifically impossible to prove that ANYTHING is 100% gluten-free.

The best available test can detect 5 ppm and it is expensive. ANYTHING could have up to 5 ppm gluten and you could never prove whether it did.

well thats depressing. What is the point of all this then? gluten-free this gluten-free that if no one knows whats really in this food I'm eating. Ugh

[K8ling]

I stick to things made in gluten-free facilities. The reality is, I need bread, I need peanut butter, I need things that may have tiny amounts of gluten in them. I have a toddler and I don't have the option to only eat veggies.

It IS way uncool that no one regulates this though.

[Gemini]

I think that if all the labeled gluten free food out there had that much gluten in it, no one would recover and be well. If you fear the food you eat, then it's a self fulfilling prophesy that you will become sick from it.

Am I saying that people don't react....no, I am not. Buit many Celaics have very sensitive systems to begin with, including myself, and they will react to foods that contian no gluten, for other reasons.

There will always be food that does become contaminated and if you react, don't eat it again. That's what I do.

But to say that naturally gluten free foods like peanut butter and veggies are a risk is incorrect. There are Celiacs who cannot eat grains at all but it has nothing to do with gluten. Their systems do not do well with digesting grains. I think that number is very low.

You do the best you can at remaining gluten free and eat the foods that work well for you. My antibody numbers were almost zero at last testing and I could never have achieved that if the bread I eat or the few processed foods I have found that agree with me contained the amount of gluten discussed here. Sometimes it's difficult to figure out what is making people sick but it isn't always gluten. We need better labeling but if it's going to cost the moon to test it all, no one would be able to afford to buy it. Then having Celiac would be a downright chore.

[mushroom]

I think that if all the labeled gluten free food out there had that much gluten in it, no one would recover and be well. If you fear the food you eat, then it's a self fulfilling prophesy that you will become sick from it.

Am I saying that people don't react....no, I am not. Buit many Celaics have very sensitive systems to begin with, including myself, and they will react to foods that contian no gluten, for other reasons.

There will always be food that does become contaminated and if you react, don't eat it again. That's what I do.

But to say that naturally gluten free foods like peanut butter and veggies are a risk is incorrect. There are Celiacs who cannot eat grains at all but it has nothing to do with gluten. Their systems do not do well with digesting grains. I think that number is very low.

You do the best you can at remaining gluten free and eat the foods that work well for you. My antibody numbers were almost zero at last testing and I could never have achieved that if the bread I eat or the few processed foods I have found that agree with me contained the amount of gluten discussed here. Sometimes it's difficult to figure out what is making people sick but it isn't always gluten. We need better labeling but if it's going to cost the moon to test it all, no one would be able to afford to buy it. Then having Celiac would be a downright chore.

All these are valid points. II was pointing out that for someone like Nate who eats a food labelled gluten free, he does not realize that he is actually ingesting a small percentage of gluten, albeit very small, and that if he eats a lot of processed foods that percentage is going to go up. Even non-processed foods can be contaminated, as with some grains (yes, it is possible you will react to a grain like I do with quinoa, but it is also possible to react to a cc'd grain), and most people new at the game have to learn this the hard way - that a naturally gluten free food can contain gluten. If you don't know there's gluten in what you are eating, you would not be fearful of it but may well be reacting if you eat too much of it. I don't think most newbies realize that this is one of the main reasons we recommend a whole foods diet because to them, gluten free means free of gluten, a free food to have in unlimited amounts.

[NateJ]

All these are valid points. II was pointing out that for someone like Nate who eats a food labelled gluten free, he does not realize that he is actually ingesting a small percentage of gluten, albeit very small, and that if he eats a lot of processed foods that percentage is going to go up. Even non-processed foods can be contaminated, as with some grains (yes, it is possible you will react to a grain like I do with quinoa, but it is also possible to react to a cc'd grain), and most people new at the game have to learn this the hard way - that a naturally gluten free food can contain gluten. If you don't know there's gluten in what you are eating, you would not be fearful of it but may well be reacting if you eat too much of it. I don't think most newbies realize that this is one of the main reasons we recommend a whole foods diet because to them, gluten free means free of gluten, a free food to have in unlimited amounts.

The only thing I've realized from being a newbie is that I cannot do this on my own and I'm not getting any better.

I'm still eating things that make me sick the next day or within hours. So gluten-free may not be my only problem.

[psawyer]

Nate, if you are new to the diet, and have damage to your villi, you may experience random reactions to foods that are a result of the damaged villi, not the food. The healing process takes time.

[georgie]

Its not just an American problem

In Australia we have had 5ppm as our standard. So anything reputable and stamped as gluten-free would be required to be tested to that level. Now the standard is being changed to 20ppm. We are being told that 20 ppm does not matter. That we should be happier with a wider selection of cheaper gluten-free food. Yeh right... I react to 20ppm and I know of many that do. There are studies that PROVE 20ppm food is accumulative. So one biscuit with 20ppm ... may.... be 'just OK' but 10 biscuits may send you under.

But 'scientific evidence' says 20ppm does not cause villi damage which is all the Coeliac brokers here seem to think matters. Fogginess, falling asleep at the steering wheel when driving, hives, continued malabsorption..... "must be something else"

[gf-soph]

Its not just an American problem

In Australia we have had 5ppm as our standard. So anything reputable and stamped as gluten-free would be required to be tested to that level. Now the standard is being changed to 20ppm. We are being told that 20 ppm does not matter. That we should be happier with a wider selection of cheaper gluten-free food. Yeh right... I react to 20ppm and I know of many that do. There are studies that PROVE 20ppm food is accumulative. So one biscuit with 20ppm ... may.... be 'just OK' but 10 biscuits may send you under.

But 'scientific evidence' says 20ppm does not cause villi damage which is all the Coeliac brokers here seem to think matters. Fogginess, falling asleep at the steering wheel when driving, hives, continued malabsorption..... "must be something else"

I am another aussie, and I was so upset when I read that the celiac society was going to start endorsing 20ppm. It's a bizarre situation though here, I can understand that they have to make decisions based on evidence but when you are someone who knows that they react to very small amounts of cc it's disheartening to know the standards are being decreased.

I too wish that products would get tested and list their actual amount e.g. 5, 7, 10, 18 ppm etc, and we could make decisions that way. Maybe some day...

[mushroom]

And we here in New Zealand generally follow along like Patsies with the Australian standards - so there it goes for us too!!

[norahsmommy]

I was reading something and it said that in America 20 ppm is not the standard 'yet' for gluten free, that it currently is 100 parts ppm or less. there is a HUGE difference between 20 and 100ppm! Has anyone else heard this yet? Oh and that they can lable something gluten free so long as the ingredients are 'naturally' gluten free, even though the product hasn't been tested. Is that true?

[psawyer]

In the US, there is currently NO regulated definition of "gluten-free". It means whatever the company wants it to mean. There is a proposed regulation that would set the bar at 20 ppm.

This lack of a definition also means that "gluten-free" means whatever a lawyer can convince a jury it SHOULD mean. As a result many companies refuse to describe their products as "gluten-free" even though they are, in fact, gluten-free.

[T.H.]

But 'scientific evidence' says 20ppm does not cause villi damage which is all the Coeliac brokers here seem to think matters.

And that scientific evidence is so....I can't even say without growling - at least not in my mood today. I shouldn't get glutened and then think about this topic, I get too annoyed, heh.

I got curious about the studies that looked at safe gluten levels for Celiacs, so I started checking out what I could find.

I've only found a few. But the ones I found all have this in common:

- the participants are Celiacs

- the participants have all been eating a gluten free diet - which was, in the areas of the study, either 200ppm or 20ppm, depending on the year.

- the participants had to be healed to a certain level to be in the study

So in other words, these studies were all done on people who have healed while eating a diet where either 200ppm or 20ppm was allowed.

And then the researchers conclude that Celiacs don't have villi damage if they eat...the same amount of gluten (or a little more) than all their celiac participants had already healed on.

Of course, anyone who is damaged by this level of gluten wouldn't be in the study, now would they? Because they are diligently eating this much gluten every day in their gluten free food supply, and not healing, so they are excluded.

Although in one case, a more sensitive celiac made it through. I'm guessing he found his own safe diet. But in the study "A prospective, double-blind, placebo-controlled trial to establish a safe gluten threshold for patients with celiac disease," one man was so ill on the test's lowest gluten levels, with vomiting and the runs and all, that he dropped out. So his results aren't included in the final tabulations (or conclusions), since he didn't go all the way through.

....but the amount the study concluded was safe for all Celiacs (50mg/d) was 5 times the amount that sent this man into clinical remission.

Seriously, I have no idea why this problematic bias in study participant selection is never looked at, because it's something that should be examined (as this one man mentioned above makes pretty clear, IMHO). I rather wish they could take some patients into a study and look at both those who are healed and those who are NOT healed. Have them all go really low in their gluten consumption and see how they heal on THAT, and then slowly work their way up. Then you'd have a better idea, and less shaky foundation, to make a conclusion about safe gluten levels.

I think that if all the labeled gluten free food out there had that much gluten in it, no one would recover and be well.

I agree, which is why I made sure to say that there are some good, conscientious companies out there that are keeping their gluten levels lower. But if we don't know that these products have any gluten at all, many of us would never fully understand our bodies, what they are reacting to, or what keeps them healthy or makes them ill. Eating too much of something gluten-free, or eating some of the gluten-free products that aren't even tested, can really cause us trouble. And getting sick from these things, we'd be looking for other ways to have ingested gluten, and we might miss that it was the gluten-free food that we just ate.

Because it's 'gluten free,' which means it 'couldn't possibly have gluten.'

Not that this is always the case, obviously, as cc is a real issue. We CAN have other allergies and intolerances. It's not always gluten. But assuming all gluten-free food is safe, and that it's almost never gluten if it's 'gluten free,' isn't good for our health, either.

But to say that naturally gluten free foods like peanut butter and veggies are a risk is incorrect.

I would respectfully disagree with that. Truly, I don't mention things like veggies in an attempt to make us afraid. I think we need to be aware and prepared, not afraid. Awareness is good.

It's the difference between being afraid I'll be attacked in a dark alley, and being aware that it's a possibility where I live so I go and take self-defense classes and I pay more attention to my surroundings.

I think we need to be aware of where the potential problems are with gluten, so we can ask more questions ahead of time, and be more aware while we're eating. Yes, gluten levels may be low in many plain or natural foods, but that doesn't mean they aren't there, and they add up. And if we never consider where they can be, we don't take the proper precautions, and we can't stay as healthy as we should be.

I'm gonna take the veggie one, first.

Let's say I'm buying organic lettuce. And the organic farmer is using cornmeal over the ground as a weed prevention method - which is done, on some organic farms. And let's say the cornmeal has a little gluten contamination, say 1,000 ppm of gluten. Which is within the realm of possibility, considering that Open Original Shared Link on gluten-free grains found quite a number that were gluten contaminated. The highest level of gluten contamination found in the study was almost 3,000 ppm, so I think 1,000 ppm gluten cc is not unreasonable.

So now my lettuce has a little bit of gluten contamination just growing on the cornmeal covered ground. Not a lot, but just a smidge. Then the farmer has farm workers picking his lettuce, and most of them eat their lunch while in the field and don't wash their hands before they touch the lettuce (This is a gluten cc risk a couple of farmers have mentioned to me when I was asking about their farming practices. Their farm workers preferred granola bars and power bars that they could eat at the same time they picked, without stopping, so they got paid more).

So there's another bit of gluten cc.

And then ignoring shipping completely, just look at the store, where people are touching the produce before you and may not have washed their hands. Where kids may have touched the produce, and in a lot of grocery stores they get this free gluten cookie to help mom make it through the grocery trip, so they have lots of gluten on their hands just before they touch the fruit, the nuts...or your lettuce.

That's where the gluten cc can come in, without even looking at chemicals or things that a super-sensitive person might have an issue with, or an allergic person, etc.... I mean, if we watched someone eat a gluten filled powerbar, wipe their hand on the back of their jeans, and pick up a bell pepper to hand to us, what would we do? Would we rinse it? Wash it with soap and water and eat it? Not eat it at all?

I think most of the time, we'd either avoid it or wash with soap and water. With modern food, we can't exactly avoid everything we didn't pick ourselves, so we NEED to be aware so we can take appropriate measures: wash our produce with soap and water to get any gluten cc off. Because honestly, how many of us just rinse our produce rather than use soap on it?

And to contrast, how many of us make sure to USE soap when we're thinking about gluten cc?

As for the peanutbutter - it's got a lot more steps along the way from the farm to us, which simply means more chances for cc. That doesn't mean there IS more cc, just that there is more potential there. Which means a little more research, a little more care, a little more paying attention when we eat it, that's all I'm saying.

I guess in the end, the biggest part of my beef with 'gluten free' is that I think the gluten free label has created a blind spot in our awareness of gluten in our food supply. Which means it hampers our ability to figure out how best to enjoy our food, stay sane, and still stay healthy.

[T.H.]

Oh and that they can lable something gluten free so long as the ingredients are 'naturally' gluten free, even though the product hasn't been tested. Is that true?

I think there are some restrictions on that. If I recall correctly - someone correct me if I'm wrong, please! - this applies to essentially one ingredient foods, like rice, quinoa, sugar, cocoa powder, that sort of thing. Sugar and cocoa powder might have anti-caking agents and such added, but they're still essentially one thing, legally, anyway.

However, yeah, anything labeled naturally gluten free can take that label without being tested, and unless the wording is changed, that will be in the law when it is put into effect.

There are groups trying to change that, however. The study I mentioned in my post just above this, on contaminated gluten-free grains, was actually done for the purpose of trying to show how many 'naturally' gluten-free grains are actually not gluten-free.

[mushroom]

And then ignoring shipping completely, just look at the store, where people are touching the produce before you and may not have washed their hands. Where kids may have touched the produce, and in a lot of grocery stores they get this free gluten cookie to help mom make it through the grocery trip, so they have lots of gluten on their hands just before they touch the fruit, the nuts...or your lettuce.

I just had ah ah-ha moment, reading this part of your post. When in Italy we were shopping in the Florence produce market. I was examining something, don't recall want, when I was tapped quite severely on the arm and the woman (having obviously heard our accents) pointed to the rubber gloves that were prominently displayed above the produce, and indicated to me that if I wanted to touch it I should put them on. Now we all know how advanced Italy is about celiac (I was not gluten free then ) but now this interaction makes much more sense to me than it did at the time, though at the time I was mortified because I did not know the custom and did think it was a good idea.

Mi dispiace!

[FooGirlsMom]

Hi

I do know what you mean. The labeling is tricky and not allowing people the most accurate information so that they can make informed choices about their health. I like the idea of certified at <20ppm, <10ppm etc.

Looking back to last October and how sick I was then...I think I was dying...I don't know if I would have been able to cope/get through the gluten to gluten-free lifestyle without those gluten-free support products. I lived on a Paleo/Atkins diet for years and felt wonderful. 2 years into glutening I was so sick I almost couldn't function. I tried going Atkins/Paleo a month into gluten-free and my body revolted. It's taken me five months of strict gluten-free eating to be able to tolerate it again and really feel good.

Back between October and January, when I went from feeling like I was dying to being human again, I relied heavily on Udi's, certified gluten-free grains etc. It was a transitional alternative I'm grateful to have had. Would I have healed faster grain-free? Maybe. But until my body could handle it, the highly diminished glutens gave me a chance to get better.

The people I feel for most in the bad labeling arena are those who react to gluten violently. I will feel like I have the flu because it's an antibody attack much like you feel you're coming down with something but my reactions aren't as bad as some.

Unfortunately, food labeling is just one thing that stick in my "craw" so to speak. The additives, colorings & chemicals that they allow (when there are safer alternatives) & people have NO idea what they are eating are almost criminal. One thing about gluten-free eating...the simplicity of the food HAS to be better for health whether a person needs gluten-free or not. For proof, just compare labels. Compare a box of Betty Crocker or Pamela's gluten-free cake mix to the normal Betty Crocker cake mix...amazing.

FooGirlsMom

[anabananakins]

Ugh, I had not heard about australia changing the levels. Grrr.

I don't really eat any pre-packaged gluten free products, because they are all too refined. But I'd like to think they were at least safe.