Posted: Tue Jan 08, 2008 9:13 am
Wow, thanks for the info, Jeff.
Since I am a gluten intolerant person, I would like to expand upon what you say on the subject.
The 1 in 133 figure is the estimated incidence of celiac disease in the population. (As I recall, a large number of blood donors were tested and this was the frequency they found. Of course, real sick folk probably wouldn't feel like donating blood, so I've always thought that this figure may be a bit low. In Italy, all children are tested and I believe the incidence is a straight 1%). However, what I've heard is that 97% of those people in the US have not been diagnosed.
Unfortunately, many doctors in the US still think that celiac is rare or that there are certain classic symptoms. So among those who have managed to be diagnosed, the average time it takes is 11 years. People report having great difficulty in getting tested, having come up with the possibility of celiac from their own research.
But this is just celiac we are talking about. Celiac is when gluten causes damage to the villi in the small intestine and that damage is observable. (At least this seems to be the most common approach -- some doctors will diagnose from some combo of blood testing, gene tests, and dietary response.) That leaves uncovered those people who react poorly to gluten but the villi haven't been damaged enough for diagnosis AND those who react but the damage is not primarily to the villi.
I've certainly run across many people who get very sick eating gluten but can't get the "celiac" label for any number of reasons. They may have tried going gluten-free, found their symptoms improved, and so don't want to go back on gluten heavily for months so that the blood and biopsy testing would be valid. There are those who don't have the supposedly right genes (although some doubt that all the relevant genes have been identified and there are some diagnosed with celiac that don't have one of the "celiac genes"). There are those who get false negatives because the damage hasn't gotten bad enough for antibodies to show up in the blood or villi damage to be found (false negative rate for the blood test is something like 30% and this is for people who actually have celiac, rather than a preceliac condition). There are those who get negative test results, are told to stop being silly and eat their gluten, for Pete's sake, and then finally, many painful years later, they DO get positive test results and so an official blessing to going gluten-free.
It is like telling a smoker not to quit until lung cancer is diagnosed.
I wouldn't put this category, which probably includes far more people than the classically "celiac," as having a milder form. They can get just as sick from eating gluten and they have to avoid it every bit as much. So I have to quibble with you on that one, Jeff.
Here are a couple articles by gastroenterologists about celiac as merely the tip of the iceberg or a subset of the larger problem of gluten intolerance. I recognize that some doctors disagree. (For them, it is classic celiac, with one of the two recognized genes and a positive biopsy, or nothing.)
http://www.celiac.com/articles/1101/1/G ... Page1.html
http://www.celiac.com/articles/759/1/Ea ... Page1.html
Since I am a gluten intolerant person, I would like to expand upon what you say on the subject.
The 1 in 133 figure is the estimated incidence of celiac disease in the population. (As I recall, a large number of blood donors were tested and this was the frequency they found. Of course, real sick folk probably wouldn't feel like donating blood, so I've always thought that this figure may be a bit low. In Italy, all children are tested and I believe the incidence is a straight 1%). However, what I've heard is that 97% of those people in the US have not been diagnosed.
Unfortunately, many doctors in the US still think that celiac is rare or that there are certain classic symptoms. So among those who have managed to be diagnosed, the average time it takes is 11 years. People report having great difficulty in getting tested, having come up with the possibility of celiac from their own research.
But this is just celiac we are talking about. Celiac is when gluten causes damage to the villi in the small intestine and that damage is observable. (At least this seems to be the most common approach -- some doctors will diagnose from some combo of blood testing, gene tests, and dietary response.) That leaves uncovered those people who react poorly to gluten but the villi haven't been damaged enough for diagnosis AND those who react but the damage is not primarily to the villi.
I've certainly run across many people who get very sick eating gluten but can't get the "celiac" label for any number of reasons. They may have tried going gluten-free, found their symptoms improved, and so don't want to go back on gluten heavily for months so that the blood and biopsy testing would be valid. There are those who don't have the supposedly right genes (although some doubt that all the relevant genes have been identified and there are some diagnosed with celiac that don't have one of the "celiac genes"). There are those who get false negatives because the damage hasn't gotten bad enough for antibodies to show up in the blood or villi damage to be found (false negative rate for the blood test is something like 30% and this is for people who actually have celiac, rather than a preceliac condition). There are those who get negative test results, are told to stop being silly and eat their gluten, for Pete's sake, and then finally, many painful years later, they DO get positive test results and so an official blessing to going gluten-free.
It is like telling a smoker not to quit until lung cancer is diagnosed.
I wouldn't put this category, which probably includes far more people than the classically "celiac," as having a milder form. They can get just as sick from eating gluten and they have to avoid it every bit as much. So I have to quibble with you on that one, Jeff.
Here are a couple articles by gastroenterologists about celiac as merely the tip of the iceberg or a subset of the larger problem of gluten intolerance. I recognize that some doctors disagree. (For them, it is classic celiac, with one of the two recognized genes and a positive biopsy, or nothing.)
http://www.celiac.com/articles/1101/1/G ... Page1.html
http://www.celiac.com/articles/759/1/Ea ... Page1.html