Interesting, baz. It certainly is a story I've heard a lot. I go on any patient forum I can find, because I've found them to be such a valuable resource! I'm new here, but so far liking this one because it seems very active - there are current conversations! Seems like it really isn't even necessary to have a lot of testing if you've already found something that helps you - go with what works!

I do find it interesting that there seem to be a lot more people who have problems with wheat/wheat products particularly, people who do not have celiac disease. One theory I've read, that seems plausible is that there is that wheat is processed using a chemical called glyphosate, the same chemical found in Round Up and pesticides, i.e. a poison. I'll try to remember to post it when I'm allowed to post links, but there is really good paper (and others) published in 2013 that discussed the great rise in celiac like symptoms and the use of glyphosate. Of course, I just read another paper criticizing the conclusions of these authors, but it seemed to be more about some other conclusions they were making, not with the GI issues. Anyway, the overall theory is that it is the glyphosate that people are reacting to, not the gluten (which is a particular protein in wheat and other substances). That is why many people test negative for celiac disease but still seem to have problems with wheat etc. On a practical level, it doesn't matter; if eating certain substances makes people sick, and not eating them helps, the mechanism doesn't matter - do what helps.

On a larger population level scale, it does matter. It's hard to argue with the clear data that the rise in patients with gluten/wheat intolerance and use of Round Up are correlated. On the other hand, correlation doesn't imply causation, however there are a lot of theoretical reasons why glyphosate could be toxic, yet food industries in the US and other countries continue to use it more and more. Interestingly, it is also being used to "cure" (I'm not sure what that means, but anyway) sugar cane, so used in the processing of sugar. And, while it is anecdotal, I read about a lot of people having problems with sugar and wheat. And sugar doesn't contain gluten.

Bottom line is I think the best we can do is 'experiment' on ourselves, and do what seems to help. A second theme I've noticed is that sometimes you have to do this despite being told it won't help, or you don't have the right disease, or a test doesn't show you having the right problem. I have been reading another thread here, where a person had a negative test for fructose intolerance, but found eliminating this from her diet made her feel dramatically better.

Anyway, this was a long diatribe, but I find this diet dilemma very interesting, and like to hear people's stories. I have tried gluten free, but probably not long enough to be able to tell if it made a difference. I'm basically tired (maybe lazy) and not very disciplined; but it's beginning to look like diet is about the only thing left that I can manipulate to try to feel better. However, I don't have diarrhea, and it seems that is a symptom that most with gluten intolerance have. Thanks for sharing your experience (and to all the others that have also)