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Enterolab Testing & Validity?


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#1 vbecton

 
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Posted 27 May 2010 - 09:14 AM

Hey guys! I'm still very new to this whole celiac disease thing, but I've just received my Enterolab box to gene test & test for gluten sensitivity...plus other things. I ordered this out of desperation for some sort of answers after all my blood work has repeatedly come back negative. As with so many people on here, I just want some answers. I'm currently gluten free, so I refuse to do a gluten challenge just for a biopsy.

So here's my question. My local Celiac support group isn't keen on Enterolab and said his testing methods were antiquated. From what I've read about Enterolab, it seems his testing methods are progressive and he seems to be able to find far more info about gluten intolerance than any other lab out there. What are your thoughts about my Celiac group not supporting Enterolab's testing?
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Diagnosed with Celiac Disease, July 2010, after 20 years of chronic low blood sugar and GI issues. I blame undiagnosed Celiac Disease for not becoming a professional marathon runner and being such a pathetic athlete in college. I was robbed :)

Gluten Free 04/2010
Dairy Free 06/2010
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#2 Skylark

 
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Posted 27 May 2010 - 10:10 AM

If you look in the biomedical literature, there is virtually nothing about stool antibody diagnostic testing. Enterolab has made the decision to only patent their tests, rather than doing proper controlled studies and publishing in the peer-reviewed scientific literature. This means that anyone with good scientific training (like me) will regard Enterolab with deep suspicion.

It is entirely possible that Eneterolab is onto something useful, but without controlled, peer-reviewed studies that address the reliability of the stool testing, the tests are scientifically meaningless. The genetic testing is known to have a very high false positive rate. 30% of the population is DQ2 or DQ8, while only an estimated 1-2% is celiac. Similarly, anti-gliadin IgA in both blood and stool are known to have very high false positive rates. The anti-tTA is entirely unstudied, so no conclusions can be made about the presence of antibodies. Notice that there is absolutely nothing on Enterolab's site about the false positive rate of their antibody tests.

IMO $350 is a ridiculous amount of money to pay for tests that cannot currently be considered diagnostic.
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#3 Lisa

 
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Posted 27 May 2010 - 10:17 AM

Hey guys! I'm still very new to this whole celiac disease thing, but I've just received my Enterolab box to gene test & test for gluten sensitivity...plus other things. I ordered this out of desperation for some sort of answers after all my blood work has repeatedly come back negative. As with so many people on here, I just want some answers. I'm currently gluten free, so I refuse to do a gluten challenge just for a biopsy.

So here's my question. My local Celiac support group isn't keen on Enterolab and said his testing methods were antiquated. From what I've read about Enterolab, it seems his testing methods are progressive and he seems to be able to find far more info about gluten intolerance than any other lab out there. What are your thoughts about my Celiac group not supporting Enterolab's testing?


Many people here rave about Enterolabs. Sometime Enterolabs may be a piece of the puzzle. I don't share their enthusiasm, due to the fact that I have never seen any independent research to the validity/accuracy of their testing. Nor has Dr. Kenneth Fine published his research, after almost a decade of promising.

The summary results that I have seen, from others, often indicate that "a sensitivity or genes were found and everyone in the family should be tested" ...um, at about $300.00+ a pop. :blink: That bothers me, and that's why Enterolabs was not my road of choice. As you are aware, they state that they can test for sensitivities, not for Celiac Disease.

There is a great deal of discussion on Dr. Fine and Enterolabs in the archives here. Some, very emotions. Educate yourself and make the best choice based on what you learn. :)
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Lisa

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"Not all who wander are lost" - JRR Tolkien

#4 vbecton

 
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Posted 27 May 2010 - 03:05 PM

Yikes! I wish I had asked this question before I bought the test. Oh well, might as well do the test and cross it off the list. I think there are so many of us that feel so frustrated with being sick that we will try anything for an answer. My real answer came when I went gluten free and my dibilitating low blood sugar (<50 / 10x per day) was totally cured. My endo doctor said I would be diabetic within a matter of years, so I had to do something drastic. I knew that my GI symptoms and hypoglycemia were connected. Every doctor I've seen so far said there was no way these two issues were connected...bozo doctors! However, I do have 2 children and one is following in my footsteps. I'm keeping him on gluten so he can have the proper tests conducted at the hospital.

Thanks for the info. This forum has been an invaluable resource!
  • 0
Diagnosed with Celiac Disease, July 2010, after 20 years of chronic low blood sugar and GI issues. I blame undiagnosed Celiac Disease for not becoming a professional marathon runner and being such a pathetic athlete in college. I was robbed :)

Gluten Free 04/2010
Dairy Free 06/2010
Soy Free 05/2010
Legume Free 05/2010
Caffeine Free 05/2007

#5 Mari

 
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Posted 27 May 2010 - 06:01 PM

Check out Dr. Fines CV at www.finerhealth.com/About/CV. He has published extensively in the field of gastroenterology. I read some time ago that he is preparing to publish on his more recent research but have not seen it yet.
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#6 Mari

 
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Posted 27 May 2010 - 06:21 PM

I decided to have the test for the DQ markers at Enterolab instead of having the biopsy. It cost about $200 four years ago and I have not regretted spending the money. I have read that Dr. Fine sends out the samples for DNA markers to a reference lab (I think it's the US National Blood Bank lab but you can check it out on the website). I would suspect that the problems your group has is has more to do with intrepreting the test results than with their accuracy. I have a background in molecular genetics and biochemistry and it took me a while and lots of reading to understand what the test meant.
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DQ6/DQ8
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Gluten free and Cow Dairy free since 2006

#7 Skylark

 
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Posted 27 May 2010 - 06:50 PM

Check out Dr. Fines CV at www.finerhealth.com/About/CV. He has published extensively in the field of gastroenterology. I read some time ago that he is preparing to publish on his more recent research but have not seen it yet.

I've looked at that CV. It's on the Enterolabs website as well. Don't you find the total and complete absence of any attempt to validate his position on fecal antibodies and celiac disease worrisome?
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#8 WheatChef

 
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Posted 28 May 2010 - 01:45 PM

I've looked at that CV. It's on the Enterolabs website as well. Don't you find the total and complete absence of any attempt to validate his position on fecal antibodies and celiac disease worrisome?


No, mainly because I don't think intestinal biopsies are the best standard to judge the presence or absence of a gluten problem. Many testing methods live or die based on whether they can accurately predict measurable microvilli damage but this is a pointless standard because that damage is nothing more than another symptom of a larger problem.

Fecal antibody tests for IgA issues is not a novel medicine technique, the mucous membranes contain the majority of the IgA in your body and these are built to survive the digestive system.
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Receiving a qualified diagnosis of Irritable Bowel Syndrome is as useful as a Psychiatrist giving you a diagnosis of "Doesn't Think Right".

#9 sunnybabi1986

 
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Posted 28 May 2010 - 03:32 PM

Ordering the test from Enterolab was probably the best thing I've ever done in my life. I was sick for months and months, worried sick because I had no health insurance. I read a lot online and celiac/gluten intolerance seemed to match my symptoms well. Still, I was skeptical that I had a problem with gluten and put off going gluten free for awhile. I finally got intensely ill and made the leap to go gluten free. I didn't feel a lot better at first and cheated a few times.

Then, when I got the test back from Enterolab, I saw that I was, in fact, created antibodies to gluten and to my own tissue. That did it for me. I've never cheated since the day I got those results back. I stuck to the diet like glue (no pun intended :)) and sure enough, within a couple months, I started feeling immensely better. I am LOADS better than I was this time last year, and were it not for the testing I did with Enterolab, I'm not sure I would have gone through with the 100% gluten free diet.

I have a lot of gratitude for what Enterolab does. It may not be accepted in the mainstream, and there will be skeptics, I completely understand that, but for me, personally, they were such a blessing.
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#10 ravenwoodglass

 
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Posted 13 June 2010 - 10:09 AM

I also am very happy that I had Enterolab testing done. I didn't have it done until 5 years after diagnosis. It solved the mystery of why my DD was told she would never be celiac despite her previously positive diagnosis based on positive blood work and biopsy. It turns out I carry two copies of a gene that is not recognized as a celiac associated gene (at least at the time), by the US doctors. Their instance that only DQ2 and DQ8 are celiac associated genes, (the ones DD's doctors tested) resulted in her going into denial about her diagnosis. Unfortunately those wonderful doctors convinced her to go back to gluten and to think all her issues are now 'stress' related.
Enterolab also pinpointed my intolerance to soy. Eliminating that has allowed me to much more fully heal.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

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

#11 ravenwoodglass

 
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Posted 13 June 2010 - 10:15 AM

I have a lot of gratitude for what Enterolab does. It may not be accepted in the mainstream, and there will be skeptics, I completely understand that, but for me, personally, they were such a blessing.


I second that.
There is much that is still to be learned about celiac. It is only recently that we have started seeing doctors accepting the relationship between mental illness and celiac, for one example. That adults can develop celiac and that is not just a childhood illness is another. The children don't outgrow celiac is another. I am thankful for Dr. Fine and his research, the patients who have the tests done, get the results and recover are, IMHO validating also.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

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

#12 Skylark

 
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Posted 13 June 2010 - 02:12 PM

I am thankful for Dr. Fine and his research, the patients who have the tests done, get the results and recover are, IMHO validating also.

People who have positive test results and recover do not validate a clinical test. Making that assumption is what statisticians call a Type I error.

Can you please provide a link to Dr. Fine's research on fecal antibodies for which you are grateful? I have searched PubMed pretty carefully and I can't find anything.
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#13 stef_the_kicking_cuty

 
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Posted 13 June 2010 - 09:36 PM

Just because you can't see God, do you believe, he's not there? Just because they don't have proof, you do believe, their tests are not valid?

I personally heard a lot of good stuff about them. I don't have health insurance either. And when I get my new job in September, I will get some tests done over them, cause I will still not have health insurance then.
  • 0
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#14 bluebonnet

 
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Posted 14 June 2010 - 03:46 AM

i'm healing because of the decision to use enterolab. it got the ball rolling so to speak. if you get the negative blood work you get discouraged again especially when you *know* gluten is the problem. not everyone gets the positive biopsy via endoscopy either. in one book/research site it will say 1 test is not conclusive. in another, endoscopy is golden. yet another you are told to combine them along with dietary response and you get your diagnosis.
enterolab is out there to help. i had a great experience with them. they answered questions for me without weeks of waiting and leaving messages. celiac is very misunderstood by many doctors out there. mine included ... just didn't know much about it. as with any illness, you have to be proactive and work with the doctors to find out what's going on ... unless you are comfortable putting your health into their hands.
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#15 ravenwoodglass

 
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Posted 14 June 2010 - 04:01 AM

People who have positive test results and recover do not validate a clinical test. Making that assumption is what statisticians call a Type I error.

Can you please provide a link to Dr. Fine's research on fecal antibodies for which you are grateful? I have searched PubMed pretty carefully and I can't find anything.


Skylark, You are certainly entititled to your opinion. Those of us who have had the tests and acted on those findings are entitleded to ours. Each are opinions.
I did not use Enterolab for my celiac diagnosis I took the tests 5 years after diagnosis because my DD had her biopsy and blood positive celiac diagnosis recinded because of a gene test. She now attributes her symptoms to the stress of first school and now her job. Because of her test results I wanted to find out what genes we did carry. I also was still having some occasional issues and his tests pinpointed a reaction to soy and casien. After eliminating both I then progressed to as complete of a recovery as I will have.
I still have some neuro damage but doctors relied on the test forms that you consider to be the only valid ones, blood tests and biopsy. They wouldn't do a biopsy since my blood work was negative and a later challenge demanded by my GI after I had been gluten-free as ordered my my allergist, a well respected physician, almost killed me so I finally got my doctor derived diagnosis. I am seronegative and I suffered for years while my brain and body continued to be under attack.
Dr Fine, as you seem aware, applied for a patent for the testing in 2001 and recieved it in 2003. There is much info in that patent application, you can do a search for it if you like I don't have time this morning.
Celiac research is continueing and they are 'discovering' more and more everyday. In some countries they use a rectal or oral challenge where gluten in used by injection or suppository and the tissue is biopsied hours later. In those countries that form of testing is considered valid and celiacs get diagnosed an average of 2 weeks after first symptoms are seen. In the US those tests are not used because they are considered too sensitive and diagnose before the villi are gone. In some countries MRI's are used to diagnose neuro impact celiac by the findings of UBO's on the scan. Here those same UBO's seen on my scans had my neuro shrug his shoulders and say 'lot's of people have those, they mean nothing, here's a script for prozac.
There is still much to learn about celiac. I, for one, can't wait until we start to diagnose people sooner rather than later. It sure would have been nice to not have lost years of my life. It would have made a great difference in my childrens lives also.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

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




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