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Before I plunk down all this money, I am wondering whether anyone has gotten a false positive with Enterolab - like the results say no soy and then you tolerate soy well. I just don't want to give up anything I don't have to at this point - my food options are dwindling every day!
Thanks all.
Lisa
enterolab question - has anyone gotten a false positive?
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That's a difficult question, and there are several ways to answer it. Technically, it has to be possible, because responses to ELISA-type tests cover a fairly broad spectrum, requiring the cut-off points to be established by statistical analysis. IOW, they follow the famous Bell Curve, and a certain number of responses will always be outside the "normal" range that is established by statistical analysis algorithms. The closer to the limits that a response falls, the greater the likelihood of a false positive, or false negative result.
So, over the years, there have been a handful of individuals here who feel that they may have received a false positive result on one of their tests. On the other hand, there are a few individuals who feel that they are sensitive to certain foods for which they had received a negative result on an Enterolab test. Since 100% accuracy is never possible with any testing procedure, Dr. Fine himself explains with every test result discussion, that if you feel that a negative result is incorrect, you should avoid the food, anyway, because for one thing, it's possible that someone can be sensitive to a certain protein in that food which is not a part of the test.
Along with this, be aware that many people with MC are asymptomatic, and even though they are sensitive to certain foods, (based on labatory antibody tests), they show no clinical symptoms. That's true of celiac disease, also. A surprising number of celiacs are asymptomatic, even though damage continues to accrue to their small intestine, as long as they continue to ingest gluten. The only way that these cases are ever diagnosed, is incidentally, while they are being biopsied for some other reason.
Frankly, I've never been concerned about the risk of unnecessarily cutting a food out of my diet, even though it might be safe for me to eat - I'm only concerned about the possibility of not avoiding a food that shouldn't be in my diet, because those are the ones that will damage my health. The ones that I cut out unnecessarily, don't hurt a thing, (other than my unrealistic expectation that I should somehow be able to eat anything I want).
I will say this: Based on the total number of tests done by the members of this board, the results of the Enterolab tests seem to be extremely accurate - far, far more accurate than any other food sensitivity tests that are available. That said, no test is perfect.
If I had to make a guess, based on the methods of statistical analysis, and considering the results received by the members here, over the years, I would guess that the Enterolab test results are probably in the range of 97 to 98% accurate. Remember, that's strictly a guess, so please don't quote me as if it were a fact. As medical lab tests go, though, Enterolab has a very, very impressive record.
Tex
So, over the years, there have been a handful of individuals here who feel that they may have received a false positive result on one of their tests. On the other hand, there are a few individuals who feel that they are sensitive to certain foods for which they had received a negative result on an Enterolab test. Since 100% accuracy is never possible with any testing procedure, Dr. Fine himself explains with every test result discussion, that if you feel that a negative result is incorrect, you should avoid the food, anyway, because for one thing, it's possible that someone can be sensitive to a certain protein in that food which is not a part of the test.
Along with this, be aware that many people with MC are asymptomatic, and even though they are sensitive to certain foods, (based on labatory antibody tests), they show no clinical symptoms. That's true of celiac disease, also. A surprising number of celiacs are asymptomatic, even though damage continues to accrue to their small intestine, as long as they continue to ingest gluten. The only way that these cases are ever diagnosed, is incidentally, while they are being biopsied for some other reason.
Frankly, I've never been concerned about the risk of unnecessarily cutting a food out of my diet, even though it might be safe for me to eat - I'm only concerned about the possibility of not avoiding a food that shouldn't be in my diet, because those are the ones that will damage my health. The ones that I cut out unnecessarily, don't hurt a thing, (other than my unrealistic expectation that I should somehow be able to eat anything I want).
I will say this: Based on the total number of tests done by the members of this board, the results of the Enterolab tests seem to be extremely accurate - far, far more accurate than any other food sensitivity tests that are available. That said, no test is perfect.
If I had to make a guess, based on the methods of statistical analysis, and considering the results received by the members here, over the years, I would guess that the Enterolab test results are probably in the range of 97 to 98% accurate. Remember, that's strictly a guess, so please don't quote me as if it were a fact. As medical lab tests go, though, Enterolab has a very, very impressive record.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
I would agree with Tex.
Since budget is (always) a consideration, I would recommend skipping the one with '11 additional foods' - additional grains, meats, nuts, potatoes. It doesn't give a definitive number for each food within the group, so you could save $$ and figure out those foods via your own careful experimenting, by keeping a food diary.
I did the gene test with my brother & his kids in mind, but I am glad I learned that I have a celiac gene and another DQ2 allele that also is associated with gluten sensitivity.
I believe false negatives are more likely than false positives, because of Tex's point, that a reaction can be caused by a protein in the food other than the one they're testing for, and also we can have reactions via another immune mechanism other than IgA. (T-cells, for example?)
I am considering my positive results definitive - I already knew from horrible experience about gluten and dairy, but was still eating eggs. And I feel better now that I've stopped.
I hope this helps. (We used to eat out much more often... I figured that I had already saved most of the money I spent on Enterolab just in the first month when I was so sick
)
Keep us posted on what you decide,
Sara
Since budget is (always) a consideration, I would recommend skipping the one with '11 additional foods' - additional grains, meats, nuts, potatoes. It doesn't give a definitive number for each food within the group, so you could save $$ and figure out those foods via your own careful experimenting, by keeping a food diary.
I did the gene test with my brother & his kids in mind, but I am glad I learned that I have a celiac gene and another DQ2 allele that also is associated with gluten sensitivity.
I believe false negatives are more likely than false positives, because of Tex's point, that a reaction can be caused by a protein in the food other than the one they're testing for, and also we can have reactions via another immune mechanism other than IgA. (T-cells, for example?)
I am considering my positive results definitive - I already knew from horrible experience about gluten and dairy, but was still eating eggs. And I feel better now that I've stopped.
I hope this helps. (We used to eat out much more often... I figured that I had already saved most of the money I spent on Enterolab just in the first month when I was so sick
)Keep us posted on what you decide,
Sara
Lisa,
The safest way to go about it is to cut out whatever the lab tests show to be a problem, and then after you are able to reach remission, and your intestines have had some time to heal, you can always experiment with adding back any food that you think you might not actually be sensitive to. Your body will tell you pretty quickly whether or not you can tolerate it, (it's so much easier to detect less-than-severe symptoms, when we're in remission).
I believe you made a good choice. I hope the tests give you definitive scores, so that there's no question about "borderline" test results.
Good luck, and thanks for keeping us updated.
Tex
The safest way to go about it is to cut out whatever the lab tests show to be a problem, and then after you are able to reach remission, and your intestines have had some time to heal, you can always experiment with adding back any food that you think you might not actually be sensitive to. Your body will tell you pretty quickly whether or not you can tolerate it, (it's so much easier to detect less-than-severe symptoms, when we're in remission).
I believe you made a good choice. I hope the tests give you definitive scores, so that there's no question about "borderline" test results.
Good luck, and thanks for keeping us updated.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Lisa - my Enterolab results showed extremely high antibodies to gluten. It was 500 which is the upper limit of the test, so I'm sure it was higher than that. It also showed that I am sensitive to soy, dairy and eggs. My internal medicine dr. (not my gastro dr.) suggested that maybe because my intestines were so inflamed from the gluten, that I was reacting to the other things. I don't think he was basing that on any evidence or research. I think he was just throwing it out as an idea. He suggested the same thing that Tex said...to eliminate gluten, soy, milk and eggs and then when things have settled down to try adding them back.
I also tested positive for one of the celiac genes and also a gluten intolerance gene. Know the thought of giving up all those things is daunting, but once you wrap your brain around it, it isn't that difficult. There are still lots of great tasting things at I can eat.
Hugs,
I also tested positive for one of the celiac genes and also a gluten intolerance gene. Know the thought of giving up all those things is daunting, but once you wrap your brain around it, it isn't that difficult. There are still lots of great tasting things at I can eat.
Hugs,
Denise
"Be the change you want to see in this world."
Mahatma Gandhi
"Be the change you want to see in this world."
Mahatma Gandhi