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I asked a question some time ago and never summarized.  Sorry for the long delay.  I will repeat the original question and give some update on what has happened with me before I summarize.  Thanks for all of your responses!

Original Question:  I'm fairly convinced that I am reacting to some gluten free flours. I'm wondering if anyone tests gluten-free foods to find out if they are really GF - any of the support organizations? Or, are the GF food manufacturers required to report their testing information anywhere?  I'm really very concerned about this problem. I hate to give up everything made with flour, but this is causing increased nerve problems and there's just no more room for error.

Many respondents mentioned the possibility of other foods causing the reactions, but since my problem was primarily an increase in nerve symptoms, I believe gluten was the culprit.  I have been tested several times and have never shown a B-12 deficiency.   One person had nerve symptoms from corn, but I haven’t noticed this myself.  

Since I posted the question, I did cut out all flour products (except Pastariso rice pasta, which I have used repeatedly with no apparent problem) and many non-flour packaged foods.  I got an unexpected bonus when I stopped the flour.  I had been having intermittent bouts of depression, which disappeared immediately and completely!   Also, my nerve symptoms have at least stabilized and the pain level has improved.  I was using all Bob’s Red Mill Flours.  I know that Bob's Red Mill has a separate milling facility and does gluten testing, so I don't understand the problem.  It may just be that I am sensitive to even undetectable levels of gluten.

From my own experience, and from reading the list, it seems that there are really 2 gluten-free diets:  the “conventional” or “less-sensitive” diet, including the GF flours, ready-made products, restaurant visits, and any items that the manufacturer states does not contain gluten ingredients.  There is also a stricter "more-sensitive" version, with no flours (or possibly home-milled flours), very few if any packaged products, fruits, vegetables, and proteins, all fresh and homemade.  Perhaps this idea should be "formally" recognized.  I think the people who educate us on the GF diet – dieticians, authors, and support organizations, would do a great service by giving explicit information that the conventional diet may not be enough.  Perhaps the sickest people should be routinely told to start on the stricter diet.  I guess I was a little dense, but it took me quite a while to realize just how sensitive I really was.  I had a war going on in my head...my body says it's bothering me, but it's supposed to be gluten-free!  As a result, I spent 7 months with more problems than I needed to have, while following the conventional diet to the letter.  
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SUMMARY:

First, this is a response to my original question by Mary Schluckebier from CSA: 

“Your message to the list serve about testing for gluten-free is very interesting. Celiac Sprue Association (CSA) periodically provides packaged food samples to a University based Food Allergy testing lab that uses an ELISA test for gliadin with a sensitivity to 10 ppm. The 
cost of the tests limits the number of items tested. Gliadin also is only one of the fractions of gluten. When products are tested the results are listed in the quarterly publication to the membership of CSA. This is a good test to detect cross contamination. There are 
additional tests on the horizon. 

The Canadian Food Inspection Agency (CFIA), the Canadian counterpart to the US FDA commonly tests for gluten (gliadin) in gf products imported into Canada. They make that information available on their web site.  For information on receiving Canadian recalls by electronic mail, or for other food safety facts, visit the Canadian web site at www.inspection.gc.ca. "

Several others mentioned the fact that Canadian products are tested by the government and that gluten-free means zero gluten in Canada.  I was told by the owner of Kinnikinnick that the government buys their products off the shelf and can test down to 20ppm.   Kinnikinnick hasn’t had a positive result in 11 years.  I have personally had great luck with the (Canadian) Pastariso pasta, but I had a bad reaction to another Canadian product:  Waffle Heaven waffles.  Interestingly, I recently noticed that Waffle Heaven has changed their packaging and no longer says gluten-free.  It now says “no added gluten”.

I’m still a bit confused about what the US standard is.  I’ve seen a Codex standard mentioned but have seen different amounts attributed to it.  Anyway, that’s not a US Government standard, is it?   And as far as I’ve  heard, there is no US government enforcement or testing at all.  One answer I received was: “In the US, the government allows 200 parts per million!!  If you are sensitive you can get very sick on gf products.”   Another answer:  “There are currently no laws governing what constitutes g.f. so anyone can label a product g.f. without much scrutiny.  Canada, however, has a law and everything carrying one (a gf label) is checked for gluten-content by the government. You might want to network with someone in Canada to get a list of US products sold there under g.f. labels. If they don't make the grade there, they can't be sold under a g.f. label. 

Several other answers were:

“There was discussion of this on this list and it seems anyone can claim a product is GF.   As was stated, there may be a world of difference between a product having no ingredients that contain gluten and truly being GF re/to contamination of some type.  Some companies do test for gluten and sometimes will tell you that in their "statement".  Any processed food is a potential problem and ideally should be avoided.  When I was first diagnosed years ago, someone told me to beware of any item with more than 4 ingredients.  Eating in a restaurant is another nightmare......”

”As a rule of thumb, the closer you get to a finished end 
product, the greater the risk of gluten contamination.”

“I have boughten products for my daughter in the U.S. labelled gluten free and she has had a reaction but I do not have any problem here in Canada if it is indeed a labelled gluten free product.”

“It is possible that products may go non-detect for lab tests, but still cause reactions in some celiacs. My wife is exquisitely sensitive and will react to these "trace" amounts of gluten. If it makes you sick, it probably has gluten (or something else that bothers you), regardless of what manufacturer says. She was taking a calcium supplement, on first two calls, company said it was gluten-free. On third call (because "something" was 
causing a reaction), they admitted it could contain gluten (depending on what kind or starch suppliers provided).”

Me again:  Sometimes I wonder if there really is any safe source of flour if you are very sensitive, but if you are going to try it, it sounds like the best solution is to buy flour and gf products from Canada, or to grind your own flour, as described below.  I would still be concerned about finding a safe source of grain:      

“I use an electric grainmill to mill my flours called the Whisper Mill; I love it and when I run out of flour I just get out the rice or corn and mill more. Of the GF flour products I use I try to purchase from companies who mill only GF flours or use suppliers who mill only GF flours. “

“Personally, I grind as much of my own stuff as I can. 
http://waltonfeed.com/kitmill.html  Granted, the whole grain has some potential for contamination, but the probabilities are much less than flour and significantly less than the end product.   Then there is the incredible inflation of the price of specialty flours compared to the whole grain, but that's a whole 'nuther subject.”

”I purchased a Kitchen Mill impact grinder: 
http://waltonfeed.com/kitmill.html to make my own flour and I have been very happy with it.  It grinds grains and beans. Freshly ground lentil flour is great! “

”The only sure way is to grind your own. I have a friend who owns a bread machine, which grinds the flour first. You can get your own chick peas, rice, corn, etc. and grind your own. “

And finally, I received this suggestion and I’ve seen it a number of times on the list.  I’m curious as to how effective it really is.  Any studies?
“Build up your gut [and lessen chances for colon cancer] by taking WITH EACH MEAL one Probiotics capsule and one L-glutamine 500mg ....that combo heals the gut and lessens some of the attacks. “




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