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Enterolab: A Scientist's Viewpoint


Skylark

37,420 views

I often get asked about Enterolab, as I don't hold their anti-gliadin stool testing in high regard.

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Dr. Fine's story is pretty much on his website. He is a published expert on microscopic colitis. He started suspecting that in some patients the colitis was caused by an autoimmune celiac-like reaction. He was disappointed in the inaccurate serum tests so he developed highly sensitive stool tests. The discovery of gluten-caused microscopic colitis was a very nice piece of science.

 

The problem I have isn't with Enterolab isn't Dr. Fine's published work, but that he has never published anything on the the stool tests. When that happens, particularly in someone with a track record of publication, you have to wonder why they aren't publishing. Perhaps he wants to keep the methods proprietary but the other reason might be that he suspects the data he has collected so far won't pass a peer review. Also, most of his customers wouldn't read the paper anyway so it's not going to affect his revenue. He has a nice business going and only occasional scientist skeptics like me saying "hey, waitaminute..."

 

Enterolab runs the test with VERY low sensitivity levels. A staggering 60% of the people who approach Enterolab because they are feeling unwell have anti-gliadin in their stool, as do 29% of healthy volunteers. That means that half the folks with anti-gliadin IgA might be perfectly normal. There is research that IS peer-reviewed suggesting that stool anti-gliadin IgA can come and go as a normal part of immune function supporting this idea. Even serum anti-gliadin IgA can come and go. (That's why you want the newer celiac panel tests along with anti-gliadin.) The stool anti-TTG is a better test for celiac, but I haven't seen many people on the board come up with anti-TTG from Enterolab. One person who did have anti-TTG missed getting treated for Crohn's for over a year because Enterolab said she had celiac and didn't mention that she needed to see a doctor to rule out other GI disorders. Not cool.

 

Fine has his lecture slides posted at Open Original Shared Link (works best with Internet Explorer). The data are interesting and worth a glance if you're curious. It is generous of him to post them for the public. The problem that shows up in his slides and the reason I don't recommend Enterolab testing is because the long-term outcome data show that fecal anti-gliadin IgA is actually a poor predictor of whether someone will feel better on the diet. In other words, you get better information from trying the diet.

 

Also notice from his data that plenty of people without the fecal IgA felt better gluten-free. The testing isn't a substitute for giving the gluten-free diet a good strict try.

 

The genetics are fine if you're happy with only the HLA-DQ beta subunit. Enterolab gets the genetic testing done at Red Cross in case you were curious. Unlike some services, which only tell you if you're DQ2 or DQ8, you will get the full results. It does not test for alpha subunit. The genetic test is not diagnostic but many people find it interesting.

 

Also if you desparately need a piece of paper to wave at somebody, and you're willing to spend a fair amount of money to get it, Enterolab is a good bet. You have a 98% chance of getting at least a gluten-sensitive gene and a 60% chance of getting fecal IgA. Not half bad compared to how hard it is to get a typical GP or GI doctor to admit you're gluten sensitive!

15 Comments


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Korwyn
Hi Skylark. I came up positive from Enterolab on the TTG. My wife came up negative on gliadin and TtG but positive on casein, which also showed up on another IgG/IgE food sensitivey panel from another source.
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RollingAlong
[i]The stool anti-TTG is a better test for celiac, but I haven't seen many people on the board come up with anti-TTG from Enterolab[/i]

Do you mean to say that you haven't seen many positive results from Enterolab on this particular test?

Is this the test you are talking about -
Fecal Antitissue Transglutaminase IGA

Why is this test better; is it more specific for celiac?

I could not agree more when you say that the best thing to do is to try the diet!
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domesticactivist

Thanks for your explanation. I, too, had wondered about the lack of scientific papers published on the stool tests. I considered doing these tests as they are less invasive, but decided I wouldn't be able to figure out how to best interpret the results and didn't want to spend the money.

I got genetic testing done for the kids by [url="http://www.kimballgenetics.com/tests-celiacdisease.html"]Kimball Genetics, a division of Labcorp[/url], who test alpha an beta and report the full results (though you have to request them). Their genetic councilor was very helpful, and our insurance did cover it once I got everyone to do the right paperwork :)

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kareng
I thought about using his services until I saw him in person. He just didn't seem "right". Not a scientific reason - just a feeling. That, paired with the fact that he doesn't publish, makes me leary.

The gluten-free diet made all the difference for me.
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Skylark
Anti-TTG (anti tissue transglutaminase IgA) is a better test for celiac because it is autoimmune. Presence of anti-TTG is definitely abnormal, whereas low levels of anti-gliadin may not be. Yes, I mean I haven't seen that many people on the board post positive anti-TTG results. There are plenty of anti-gliadin as you would expect with a 60% positive rate.

Korwyn, I'm glad you found the testing helpful. It is good to know that Enterolab findings sometimes cross-validate.
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RollingAlong
Thank you very much for clarifying! It sounds like the Anti-TTG could be used for follow-up (where the person's blood work has always been negative) whereas the other test doesn't provide useful info.

They now offer tests for a wider range of foods and I have no idea if those tests make any sense, but if they set the sensitivity too low, they are probably not worth it.
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Skylark
The thing with ANY antibody testing for sensitivity is that you have to follow up with diet. One piece of information that could be useful is absence of antibodies; however, there were people in Fine's data who were negative for anti-gliadin and still felt better gluten-free. It could be because in some people gluten seems to have an innate inflammatory effect. But then you have to wonder if other food intolerances could work the same way. If you don't need antibodies to react to a food the whole idea of blood or fecal antibody testing is thrown into question.

I'm wrestling with this issue myself, as I am wondering about dairy, soy, and corn. Testing by elimination diet is a pain but I don't trust any of the various IgG or IgA test results well enough to bother to pay for them.
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Lori2
A year ago, when my celiac panel came back negative, I did the Enterolab stool testing. My anti-gliaden was positive (219, normal less than 10) but I do not have the DQ2 or DQ8 gene. Since I could find no understandable information about anti-TTG, I had to ignore it. How significant is my anti-TTG score of 86 (normal less than 10)? I’m wondering now just what that signifies.

Skylark, I want to thank you for the time you spend helping us understand these things. It’s really appreciated.
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Skylark

You're welcome. :) Fine hasn't put any data about his anti-TTG tests on his website. If I had your results I would try gluten-free and ask my Dr. to rule out inflammatory bowel diseases (like Crohn's or microscopic colitis) if it didn't help.

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TJSpin
but what if the 29% of the healthy volunteers actually had atypical symptoms...those that are unnoticeable. dr, Tom O'Bryan says that only 1 of 8 actually feel the "typical" symptoms of bloating and other tummy problems. What if those 29% had issues that weren't noticed yet. Also, how is someone supposed to do a gluten removal test when they have these symptoms. My daughter has tooth enamel issues and geographic tongue. These will not just go away after a week off gluten.
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TJSpin
[quote name='Lori2' timestamp='1309641256']
A year ago, when my celiac panel came back negative, I did the Enterolab stool testing. My anti-gliaden was positive (219, normal less than 10) but I do not have the DQ2 or DQ8 gene. Since I could find no understandable information about anti-TTG, I had to ignore it. How significant is my anti-TTG score of 86 (normal less than 10)? I’m wondering now just what that signifies.Skylark, I want to thank you for the time you spend helping us understand these things. It’s really appreciated.
[/quote]

Dr. Fasano stated in [url="http://www.glutenfreeliving.com/Browse/file/GFL_Fasano_interview.pdf"]this interview[/url] that "It’s rare, but 2 to 3 percent of the people who are diagnosed with celiac disease are HLA-DQ2/DQ8 negative."
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TJSpin
Just to add another positive anti-tTTG test from Enterolabs. My 6 year old daughter's test read 19 units with <10 being normal.
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TJSpin
[quote name='Skylark' timestamp='1307861997']
... there were people in Fine's data who were negative for anti-gliadin and still felt better gluten-free.
[/quote]

Also, Dr. O'Bryan states that up tp 50% of those tested will test negative with anti-gliadin. That is why they have their new test which test for about 9 or 10 other peptides of gluten. So, he states that even with the saliva test through Cyrex, only those who have a positive test can rely on it. Those with a negative still have to take the blood test because it test for the other peptides.
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brigala

Anti-TTG (anti tissue transglutaminase IgA) is a better test for celiac because it is autoimmune. Presence of anti-TTG is definitely abnormal, whereas low levels of anti-gliadin may not be. Yes, I mean I haven't seen that many people on the board post positive anti-TTG results. There are plenty of anti-gliadin as you would expect with a 60% positive rate.

I had my son tested back in 2009, primarily as a response to his declaration that "I'm never eating gluten again." He was 14 at the time. We had been eating gluten-free at home for a couple of years already due to my extreme gluten sensitivity (I never was tested for Celiac, although my doctor is convinced I have it), and he had trialed a gluten free diet previously but had given it up after a couple of months, declaring that it wasn't making a difference in his health issues.

We had already had a blood test run some time earlier (routine because other family members had been diagnosed with Celiac), but with no positive results, and I wanted something for my son to look at as confirmation of what was already obvious to me - that he needed to be eating gluten free.

Anyway, he tested positive for both the Anti-giladin IgA (28 units) and the Anti-tissue Transglutaminase IgA (26 units). His genetic results make no sense to me but are as follows:
HLA-DQB1 Molecular analysis, Allele 1: 0303

HLA-DQB1 Molecular analysis, Allele 2: 0501

Serologic equivalent: HLA-DQ 3,1 (Subtype 9,5)

Dr. Fine's interpretation of this was that he has two genes known to be associated with gluten sensitivity, but none associated with Celiac. Which is interesting, since we do have other family members (my mom and my sister) who have official Celiac diagnoses through traditional lab tests. Nobody but my son has had any genetic testing done.

The upshot of it is that my son has been gluten free since 2009 and, other than accidental exposure here and there, has been able to maintain the gluten free diet all this time. He gets obvious GI symptoms when he eats gluten (which we already knew before the test) so for us the Enterolab results were helpful. They also were useful for distributing among extended family members, including my son's father, and I feel pretty strongly that it helped us avoid a lot of the "why do you have him on this horrible diet when his blood test came back normal" backlash we could have otherwise received from that end of the family. In addition, the gene test alerted his father to the fact that he apparently also carries a gluten-sensitivity gene, and in the intervening years between then and now several of my son's cousins on that side of the family have jumped on the gluten-free bandwagon. I can't help but think that the awareness that the gene was lurking among them might have helped some of those kids avoid years of misdiagnosis of troublesome symptoms.

Overall, I feel it was money well spent. I'm not sure I'd go the same direction again with any other family members, especially since there are apparently some newer blood tests which are more widely accepted. Even though this blog post is super old, I just wanted to share what my experience with Enterolab was. I do wish he would publish something peer-reviewed on the subject of fecal testing, though.

Link to comment
RollingAlong

Here's a study talking about TTG and intestinal titers

Open Original Shared Link

Open Original Shared Link 2014 Apr 28. doi: 10.1111/cei.12366. [Epub ahead of print]
In celiac disease intestinal titers of anti-tissue transglutaminase2 antibodies positively correlate with the mucosal damage degree and inversely with the gluten-free diet duration.
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