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In Defense Of 20 Parts Per Million


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69 replies to this topic

#1 psawyer

 
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Posted 20 September 2011 - 01:52 PM

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.
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Peter
Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000.
Type 1 (autoimmune) diabetes diagnosed in March 1986
Markham, Ontario (borders on Toronto)

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#2 Skylark

 
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Posted 20 September 2011 - 05:53 PM

Grrrr.... Time to write the FDA again. Stupid clinical trials studying a self-selected less sensitive population...
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#3 pricklypear1971

 
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Posted 20 September 2011 - 07:07 PM

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.
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#4 psawyer

 
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Posted 20 September 2011 - 09:43 PM

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.
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Peter
Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000.
Type 1 (autoimmune) diabetes diagnosed in March 1986
Markham, Ontario (borders on Toronto)

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#5 mushroom

 
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Posted 20 September 2011 - 10:41 PM

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 :rolleyes: . 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 :blink:
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#6 pricklypear1971

 
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Posted 21 September 2011 - 02:25 AM

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.
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#7 psawyer

 
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Posted 21 September 2011 - 03:08 AM

I wasn't commenting on the letter.

Then why did you post here? This topic is about Dr Fasano's letter.
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Peter
Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000.
Type 1 (autoimmune) diabetes diagnosed in March 1986
Markham, Ontario (borders on Toronto)

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#8 pricklypear1971

 
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Posted 21 September 2011 - 04:03 AM

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.
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#9 Jestgar

 
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Posted 21 September 2011 - 04:14 AM

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.
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#10 pricklypear1971

 
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Posted 21 September 2011 - 04:22 AM

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.
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#11 Jestgar

 
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Posted 21 September 2011 - 04:26 AM

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.
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"But then, in all honesty, if scientists don't play god, who will?"
- James Watson

My sources are unreliable, but their information is fascinating.
- Ashleigh Brilliant

Leap, and the net will appear.

#12 pricklypear1971

 
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Posted 21 September 2011 - 04:29 AM

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.
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#13 Jestgar

 
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Posted 21 September 2011 - 04:33 AM

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.
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"But then, in all honesty, if scientists don't play god, who will?"
- James Watson

My sources are unreliable, but their information is fascinating.
- Ashleigh Brilliant

Leap, and the net will appear.

#14 pricklypear1971

 
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Posted 21 September 2011 - 04:37 AM

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.
  • 0
Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#15 weluvgators

 
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Posted 21 September 2011 - 05:10 AM

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.
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My super silly red siren is my guiding light. She has been a tremendous lesson for me in how gluten affects different people in very different ways. She is a super duper silly girl that was simply born that way. I have no idea why I am so blessed to have her guidance.




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