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Member Since 08 Apr 2009
Offline Last Active Jan 16 2013 04:28 PM

#632936 Are Enterolab Tests Reliable?

Posted by on 19 August 2010 - 03:51 AM

I think maybe I understand why Dr. Fine is not publishing. He has a little data on his website showing that he has sacrificed specificity in order to have high sensitivity on his tests, and he pretty much says as much in the accompanying test. I'm not sure the way he has defined the reference ranges would survive a peer review.

Skylarks's point is a good one. If by "reliable" you mean "truthful", no test will be reliable. Even serologic tests for celiac have what I consider to be a high false negative rate (report negative results when subject has celiac). However, if by "reliable" you mean "helpful in decisionmaking", I consider the test reliable.

I don't believe my Enterolab test was dead on truthful, but it aided me in deciding to give up gluten. Other factors that aided the decision included family history, children diagnosed by biopsy, the subsequent dietary response, and response when gluten is unexpectedly reintroduced (i.e. "glutened").

Untimately, the preponderance of evidence is what counted for me. For someone who is a silent celiac, however, the answer may be different.
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#621539 Walt Disney World Resort

Posted by on 04 July 2010 - 05:52 AM

If you plan on eating in the WDW restaurants, bear in mind these two things:

1) WDW generally has an excellent reputation, and in many ways is simply awesome for gluten-free dining, and

2) I got glutened there. But only once in a week.

Although my story may be an anomaly, here it is: a few months ago I stayed in one of resort hotels. My first night I went to the general restaurant; it's set up with various stations that make food to order. I told the server I was gluten free, and she got a chef to speak to me. He was awesome, leading me around to all of the food stations, explaining what I could and could not have, and how things were made. He made me feel perfectly comfortable. I chose to eat a steak sandwich without the bun. He spoke to the grill superintendent, who spoke to the griller, went in back to cook my fries in clean oil, and we were off to the races. Unfortunately, I came at a high traffic time and many orders were being prepared at once.

It was only after I got back to my room and felt the usual menagerie of symptoms developing that I recalled a glimpse of my speak being prepared a grill shared with buns and tostadas, being flipped by a spatula that just flipped a tostada. The results were entirely predictable.

I should have been more aware and less trusting.

Moral: It's an amazing place and does an outstanding job, but mistakes do occur. Like everywhere else, stay alert.
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#616696 Enterolab Testing & Validity?

Posted by on 14 June 2010 - 04:55 AM

I think it is important to keep medical tests in perspective. As much as some may look at medicine as a science, much is guesswork. For example, many studies show a correlation between celiac and other diseases, but no one has yet proved the connection. Another example is the current dispute over celiac being primarily a gut disease or a neurological disease with gastrointestinal issues only in some patients. Not surprisingly, there are no firm definitions of gluten intolerance, and no generally accepted tests.

Against this backdrop we should keep the goal of health firmly in focus. If a test indicates a gluten intolerance, and dietary change brings improved health, the test was beneficial.

Maybe those who evidently believe that only "proven" tests be used can tell us what someone should do when serologic and biopsy are negative, but symptoms go away when gluten is removed from the diet? Maybe they could also explain the validity of the "normal" range for serologic tests, why different labs have different ranges, and why ranges from the same lab change over time. And the relationship between the range and health in any particular patient.

Our scientific knowledge has limits. We have to recognize those limits and still do what we can to stay healthy.
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#614764 Neuro Symptoms

Posted by on 04 June 2010 - 05:22 PM

I read an interesting story in The Lancet on the neurological manifestations of celiac disease. The article said that an autoimmune reaction in the gut has a marker of TTG2; that's the marker in nearly all celiac panels. For an autoimmune reaction in the brain, however, the marker is TTG6. Apparently few labs can check for that marker, and few doctors know about it. See http://www.ncbi.nlm....pubmed/20170845

So yes, you could have celiac disease with a negative celiac panel. Or you could be one of the handful out of a hundred that has a negative serologic test and a positive gut biopsy. Or you could be gluten intolerant, with a negative blood test.
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