Sick after having Gluten

[psawyer 697]

Here is a link to a letter from Alessio Fasano, MD, of the University of Maryland Medical School's Center for Celiac Research regarding gluten-free labeling.

[Skylark 938]

Grrrr.... Time to write the FDA again. Stupid clinical trials studying a self-selected less sensitive population...

[pricklypear1971 355]

Grrrr.... Time to write the FDA again. Stupid clinical trials studying a self-selected less sensitive population...

I'm going to state flat-out I haven't read the above link....

But one study synopsis I read about wheat processed to remove the gluten really ticked me off. I don't remember the exact numbers but since a statistically insignificant number of celiacs were intolerant of the de-glutened wheat product it was deemed safe and non-reactive.

That kinda made me mad.

[psawyer 697]

I'm going to state flat-out I haven't read the above link....

Perhaps it would be a good idea to actually read Dr Fasano's writings before condemning them.

[mushroom 1,209]

Perhaps there is another way for the FDA to proceed. I know, it involves more label-reading for celiacs, but what celiac person doesn't read labels anyway . If a company is going to test anyway, maybe they can label what their testing reveals and let the consumer decide whether they want to buy it or not

[pricklypear1971 355]

Perhaps it would be a good idea to actually read Dr Fasano's writings before condemning them.

I wasn't commenting on the letter. Besides, the letter correlated exactly with what I was discussing. So far

everything I've read "in defense of 20 ppm" says the same thing. Nothing new in his letter. The point is that the defense is almost always based on two things - that it works for most and it's prohibitively expensive to want to reach for lower ppm levels.

That's great for everyone else but not for people who are super sensitive. The hard part is there may not ever be a processed food or product that is safe for super gluten sensitives. Sometimes it's hard to find whole foods that are safe, especially since super sensitivity usually in involves more than one sensitivity, not just gluten (pesticides, waxes, preservatives).

These are just hard facts to face when you struggle to EAT. Kind of gives me a new perspective on things, considering celiacs apparentlyrun this risk, the longer we are gluten-free.

[psawyer 697]

I wasn't commenting on the letter.

Then why did you post here? This topic is about Dr Fasano's letter.

[pricklypear1971 355]

Then why did you post here? This topic is about Dr Fasano's letter.

Because it fits. Dr. Fasano's letter is based in part on scientific studies like the one I mentioned. A statistically insignificant number of people have a problem with 10 ppm. That's fine and dandy unless it's YOU they are talking about, then it becomes amazingly important.

It also adds insult to injury that Dr. Fasano is a leader in celiac research. While I can appreciate his stance, and am not surprised, I do understand the anger and potential problems this causes for those with opposing views.

[Jestgar 716]

That's great for everyone else but not for people who are super sensitive. The hard part is there may not ever be a processed food or product that is safe for super gluten sensitives.

I guess I don't see why you (anyone) needs to eat processed food. Instead of stressing about what some packaged food tests at, why not just make all your own meals from whole foods? It's a different lifestyle, yes, but so much healthier for a lot of reasons.

[pricklypear1971 355]

I guess I don't see why you (anyone) needs to eat processed food. Instead of stressing about what some packaged food tests at, why not just make all your own meals from whole foods? It's a different lifestyle, yes, but so much healthier for a lot of reasons.

Because with today's lifestyle - work, travel, etc. that consistently takes people away from home it is almost impossible to not encounter processed food.

I'm sure we've all encountered something like this when trying to order a simple salad. Order lettuce, tomatoes and receive dressing all over it or croutons or cheese..,. Processed food just seems to magically appear.

As gluten free restaurants and options become more common people with sensitivities will have more options. And quite a few of them will have processed elements to

them.

Ironically, I find quite a bit of ready-made gluten-free food out there at gluten-free friendly restaurants. It seems to be "safer" for them to serve. And they have a point. It prevents cc, I'm sure.

[Jestgar 716]

Because with today's lifestyle - work, travel, etc. that consistently takes people away from home it is almost impossible to not encounter processed food.

I'm sure we've all encountered something like this when trying to order a simple salad. Order lettuce, tomatoes and receive dressing all over it or croutons or cheese..,. Processed food just seems to magically appear.

I guess I don't get this. I manage to bring or store my own food for just about everything. Eating out is a choice, not a convenience. Even when traveling I buy whole foods and eat them raw, for the most part. I just skip the stuff that needs cooking.

[pricklypear1971 355]

I guess I don't get this. I manage to bring or store my own food for just about everything. Eating out is a choice, not a convenience. Even when traveling I buy whole foods and eat them raw, for the most part. I just skip the stuff that needs cooking.

It isn't that easy with business affairs. Especially when you have no control over the venue and you are away from home, in a different hotel room every night.

[Jestgar 716]

It isn't that easy with business affairs. Especially when you have no control over the venue and you are away from home, in a different hotel room every night.

I don't travel for business, so I don't have that perspective, but I imagine that I could come up with a solution, if I really had too. Maybe not. I know when I backpack in other countries I hit the market for fresh veggies, and if I'm in a US city with no food, my first choice is the grocery store, not a restaurant. Meals with clients, I suppose, could be an issue.

[pricklypear1971 355]

I guess I don't get this. I manage to bring or store my own food for just about everything. Eating out is a choice, not a convenience. Even when traveling I buy whole foods and eat them raw, for the most part. I just skip the stuff that needs cooking.

I admit, fast food restaurants now are grocery stores. At least that's how I look at it.

It's difficult to be in a work situation - a 4 hour dinner meeting, at a nicecrestaurant in front if executives and whip out your own raw food. At least consistently... Then to

be running out the door into a car for a 2 hour drive to another hotel that may or may not have a kitchenette you requested. Up at 5 to make a breakfast meeting where you probably won't be able to eat the food - and you're running out of food because you couldn't get to a store last night or that morning because none were open en route.

It's exhausting, no?

So, this is the long route around but to make psawyer happy - Celiacs count on being able to find edible, safe food. If you aren't supersensitive you stand a decent chance. While Dr. Fasano's opinion may be conducive to supply, it Is supportive of a food supply that is unsafe for a number if sensitive individuals.

Personally, I'm more supportive of labeling that lists ingredients and derivatives, and tells what kind of facility it was manufactured in. For foods to be gluten free, they should be just that. Gluten free. Does that mean less gluten free labeled foods? Yes. That doesn't mean "no gluten ingredients" along with facility info won't work for most. Tested to 10 ppm is even better. Gluten free is the cherry on top.

[weluvgators 54]

I guess I don't see why you (anyone) needs to eat processed food. Instead of stressing about what some packaged food tests at, why not just make all your own meals from whole foods? It's a different lifestyle, yes, but so much healthier for a lot of reasons.

This can be incredibly problematic. As a celiac mother of three celiac kids, that is ALOT of food prep! SOMEBODY has to process the food that we eat, even if it is just washing it. Usually some additional form of processing is desireable for a fair chunk of it too, even if it is just cutting, dicing, grating it. And if you are a family with two working parents, trying to manage ALL of your own food processing - WOW - please share all of the tips and tricks that you have found to work. While I aspire for my kids to pull more of their own weight in food sourcing, processing and prep - they remain very young and are not yet skilled to do "their fair share" of this work.

And then there are the school issues. Schools want very much for you to be able to provide processed foods for your children. We need to maintain a shelf stable supply of food and drink at the school for unexpected events. There are several instances during the school year when processed foods really are a more reasonable answer to the school's requests. And I am simply overlooking the idea that celiac children deserve equal opportunity in our schools, including free and reduced breakfast and lunch. It simply isn't safe for my kids, and I leave it at that. But not every celiac child has that luxury of declining free/reduced food from school, and the schools rely very much on processed foods - how many pounds of processed food would a celiac child eating from our schools eat in a given day?

From Dr. Fasano's letter:

The three-month trial showed that a daily intake of 10 mg of gluten (that, translated in ppms, would be equivalent to the daily ingestion of more than a pound of gluten free products containing 20 ppm of gluten!) for three months by adults with celiac disease caused no intestinal damage.

And what concerns me about this is that it can be quite easy to eat a pound of "gluten free" food when looking at some celiac populations. What about celiac teenage boys? Don't they deserve adequate protection? What about a celiac family with three teenage boys?

And it goes well beyond "processed food"! Have you tried finding truly gluten free grains? So is our "gluten free" grain supply going to be "safe" at 20 PPM too? Now how easy is it to eat more than a pound of "gluten free" food on a daily basis?

So, really, what is wrong with at least aiming for 10 PPM (seems to be working well for GFCO certification, a gluten intolerant population recommendation! and only for now, as I truly think <5 ppm, and lower, is in the best interests of ALL celiacs) in our testing and giving more of these populations the ability to safely eat 2 pounds of "gluten free" food in a day??

For reference, I found that humans typically eat 3-5 pounds of food each day.

[Skylark 938]

You all are missing the biggest problem. Only volunteers enter clinical trials. If you're super-sensitive, there is no incentive Faesano's clinic could offer that would make you participate in a trial where you eat 10 mg of gluten a day. They are probably paying on the order of $100-$150 to compensate people for the discomfort of being scoped. That means the study group is what we call "self selected". They are people who don't expect to get sick from the 10 mg of gluten. Even worse for the data, clinical trial participants are allowed to drop the trial at any time for any reason. Someone who feels ill after a couple days will simply drop and forego the cash.

This is an absolute necessity to run human trials fairly and safely, but it means the data from a trial like these gluten challenges is not necessarily a representative sample of celiacs.

[pricklypear1971 355]

You all are missing the biggest problem. Only volunteers enter clinical trials. If you're super-sensitive, there is no incentive Faesano's clinic could offer that would make you participate in a trial where you eat 10 mg of gluten a day. They are probably paying on the order of $100-$150 to compensate people for the discomfort of being scoped. That means the study group is what we call "self selected". They are people who don't expect to get sick from the 10 mg of gluten. Even worse for the data, clinical trial participants are allowed to drop the trial at any time for any reason. Someone who feels ill after a couple days will simply drop and forego the cash.

This is an absolute necessity to run human trials fairly and safely, but it means the data from a trial like these gluten challenges is not necessarily a representative sample of

celiacs.

I agree, this is a potential problem. However, I haven't read his methodology.

[T.H. 406]

I thought some of the points about testing and 20 ppm that this couple made were pretty pertinent to the subject, actually.

http://ultimateglutenfree.com/2011/08/fda-20-ppm-regulation-gluten-free-food-celiac-disease/

They're knowledgeable about testing, and have some good points on the limitations. Their ideas made more sense to me than Fasano's, in part because while they acknowledge the financial and testing limitations, their proposal was that, at the very least, the FDA make a label that ensures ALL celiac's safety.

As a gluten free label's only purpose is the safety of people who react to gluten, that doesn't seem unreasonable to me.

Considering the statistics on unhealed celiacs, super-sensitives are not the only ones who seem to be getting sick on a 20 ppm diet. Maybe for different reasons (eating too many gluten-free products vs. eating them at all, at a guess), but it's still an issue.

So the above couple proposes to not call a food gluten free if it's not. Let us know the ppm, let us know it's safe for most celiacs, if need be, even. But at least that way, all celiacs have the opportunity to stay safe.

Yes, Fasano is a celiac expert. He's the one who got people to look at the biopsy as the gold standard for celiac diagnosis, which was great. He's also the one who, after more research, is trying to get the changed, because he's admitted he was incorrect.

I hope that a few years from now, he's going to have the same reaction to his pushing for a 20 ppm standard as safe and desirable. Because I've contacted his research center before and asked about any information they have on sensitive celiacs, or on unhealed celiacs trying a lower than 20 ppm diet, and I was told that the studies I was inquiring about didn't exist, to their knowledge.

With no studies on less ppm than this, how can any expert claim that they've investigated it fully, enough to make it a national standard?

[Skylark 938]

I agree, this is a potential problem. However, I haven't read his methodology.

It is a problem with every clinical trial that has ever been run. Period. There is no way to both do ethical research AND get a truly representative sample of people.

[Jestgar 716]

I guess I don't see why you need a label to choose your food. For the majority of people, the 20ppm will work. Most won't react, some won't care. For those that do react at that level, would you believe a lower level stamp anyway? Wouldn't you make your choices based on previous experience with that food?

Has your experience with government labeling been so good that you believe companies wouldn't find a way to skirt the truth even with proper testing? You could add water to something to get it below the acceptable threshold, or dust it with sugar or something.

And even if it's completely legit and accurate, your dose totally depends on how much you eat. You can take the "gluten-free" label as 20ppm and only eat 1/4 of the serving size. Now you've ingested the same amount of gluten as you would have had you eaten something tested at 5ppm. For how many of you would this work?

Ultimately, your health is up to you. It doesn't really matter what a company puts on a box.

[sariesue 27]

I think that there is a need for a testing standard because than it can be enforced and universally applied to products. And if there is a standard you can still make the decision to not eat/buy a product. Just like it is now only it would be safer for a majority of people. If the super sensitive population want's their needs to be met than they need to sign up for clinical studies. You can't expect that your exact needs to be met if you won't volunteer to be part of a study. Plus, many people who are considered super sensitive have allergies or intolerances with other food which makes a national standard useless because even if the product was completely gluten-free they'd still have to look for other ingredients. Personally, I'd like to be able to look at a package and know that the gluten free label means that it was tested to a specific standard, not the companies best guess that they don't use gluten so their product should be gluten free.

For those who complain that it's too difficult for them to have food based meetings or to travel for business, use the American with Disabilities Act to get the accommodations that you need like that your meetings not be food based, that you can only travel for 2 night in a row, or that you need access to a grocery store during your stay and a room with a kitchenette. Plus keep a jar of peanut butter and some gluten-free pretzels and keep them in your bag. That way you always have a high protein snack regardless of what's around you.

[Gemini 836]

I guess I don't see why you need a label to choose your food. For the majority of people, the 20ppm will work. Most won't react, some won't care. For those that do react at that level, would you believe a lower level stamp anyway? Wouldn't you make your choices based on previous experience with that food?

Has your experience with government labeling been so good that you believe companies wouldn't find a way to skirt the truth even with proper testing? You could add water to something to get it below the acceptable threshold, or dust it with sugar or something.

And even if it's completely legit and accurate, your dose totally depends on how much you eat. You can take the "gluten-free" label as 20ppm and only eat 1/4 of the serving size. Now you've ingested the same amount of gluten as you would have had you eaten something tested at 5ppm. For how many of you would this work?

Ultimately, your health is up to you. It doesn't really matter what a company puts on a box.

This is a very good point and one I pretty much follow. If you eat a diet based heavily on whole foods and use gluten-free treats and baked goods as such...a treat and not part of your daily diet, then you should not have a problem. All this obsession with ppm doesn't mean you will be eating a completely gluten-free diet...but there is no way to prove that anyway. Super sensitivity usually means other food intolerances also so many times it's a guess to try and figure it out.

I find I cannot eat the vast majority of items made in shared facilities. So I pretty much stick with stuff from dedicated facilities and have never been glutened from one and I am a fairly sensitive, full blown Celiac who has healed well. I eat a mostly whole foods diet with treats thrown in and this has worked very well for the majority of Celiacs I know. Some will take longer to heal, that's pretty normal. If you are that sensitive, why would

this suggested standard bother you? You probably don't eat the stuff anyway. Most companies worth their salt test to a certain standard, and yes, it can vary, but most Celiacs do just fine with that. If you are unsure of a product or have become ill from it, don't eat it again.

All I know is I have found certain staples like bread that are quite good and don't want them to cost $20.00 per loaf. I have never become ill from the bread and have no doubt if there is any gluten in it, it's well below what this standard would be or I'd get sick. I trust what my body tells me and don't heavily rely on what the package says other than "dedicated facility". The same would apply when I make my own bread...if the flours come from dedicated facilities and I have zero reaction from it, it's not something I worry about.

[Scott Adams 225]

There is a lot more scientific research posted on this site about this topic at:

http://www.celiac.com/categories/Gluten%252dFree-Diet%2C-Celiac-Disease-%26-Codex-Alimentarius-Wheat-Starch/

The problem with a lower level, say 5ppm, is that many companies will no longer put "gluten-free" on their labels due to the vastly increased liability factor, and the huge expense of trying to maintain such levels in all batches. While the idea of being more strict sounds like it would make you more safe--this might not actually be the case. More strict could mean less choice and more cost.

I am aware of at least one manufacturer who have already removed "gluten-free" from their labels due to the new 5ppm Canadian laws. Their products haven't changed a bit, and are still gluten-free according to the 20ppm standard and they regularly test below 5ppm, however, they occasionally get a batch that is slightly above 5ppm. Such a test would, under current Canadian standards, set of a nationwide recall of their products, the cost of which could put them out of business.

Additionally, it is my understanding (correct me if I am wrong here), that Schar products are not available in Canada. I have heard that if you contact them they will tell you it is because they don't have French/English labels, however, I suspect that the 5ppm regulation might be the real culprit.

In any case, the "zero tolerance" position expressed by some on this board and in the celiac community would actually backfire and create less choices, and more expensive products. Additionally I doubt the super-sensitive folks would eat them anyway, as they could contain up to 5ppm...right?

Take care,

Scott

[jerseyangel 412]

This is a very good point and one I pretty much follow. If you eat a diet based heavily on whole foods and use gluten-free treats and baked goods as such...a treat and not part of your daily diet, then you should not have a problem. All this obsession with ppm doesn't mean you will be eating a completely gluten-free diet...but there is no way to prove that anyway. Super sensitivity usually means other food intolerances also so many times it's a guess to try and figure it out.

I find I cannot eat the vast majority of items made in shared facilities. So I pretty much stick with stuff from dedicated facilities and have never been glutened from one and I am a fairly sensitive, full blown Celiac who has healed well. I eat a mostly whole foods diet with treats thrown in and this has worked very well for the majority of Celiacs I know. Some will take longer to heal, that's pretty normal. If you are that sensitive, why would

this suggested standard bother you? You probably don't eat the stuff anyway. Most companies worth their salt test to a certain standard, and yes, it can vary, but most Celiacs do just fine with that. If you are unsure of a product or have become ill from it, don't eat it again.

All I know is I have found certain staples like bread that are quite good and don't want them to cost $20.00 per loaf. I have never become ill from the bread and have no doubt if there is any gluten in it, it's well below what this standard would be or I'd get sick. I trust what my body tells me and don't heavily rely on what the package says other than "dedicated facility". The same would apply when I make my own bread...if the flours come from dedicated facilities and I have zero reaction from it, it's not something I worry about.

I agree. I'm very sensitive and find that I do best to start with whole foods and make meals from scratch. I do use some mixes and flours from dedicated facilities (for treats as well) and find it works very well for me.

[Skylark 938]

What I'd like to see is the 10 ppm standard as applied by GFCO. I get sick from Amy's, who is putatively manufacturing to 20 ppm. I have never gotten sick from a GFCO certified food, and plenty of companies seem perfectly capable of manufacturing to those standards. I told the FDA this, and am praying they'll listen.