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Enterolab - I'M Skeptical


LJ-Mom

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LJ-Mom Rookie

Can anyone tell me if they know anyone who's gotten (correctly) negative celiac results from Enterolab? I've read some posts that people think it is a scam, that testing gives too many false positives - and that it is generally confirming what people want to hear.

If this is a legitimate way of testing that is better than what is out there today, why don't doctors refer for this testing? why don't insurance companies cover it?

Any experts at Colombia or Maryland to believe in this test?


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Jestgar Rising Star

If you do a search on the forum you'll see that this subject has come up before and many people have had spouses that return a negative result. Since most people who send off for a test are symptomatic, it's not unusual that most of them would get a positive result.

Sunshine24 Rookie

Not sure if this helps, but I was first diagnoised via a bloodtest at my GP's office and right away went to Columbia's center. I had already done the Entero test and came clutching those results to show my doctor. She didn't even look, as she said it doesn't help her, since it is a private lab and basically the main doctor there determines his own standards and since he doesn't share his findings, how can she know what my results are compared to a test subject, a subject with celiac disease, etc etc. She then took her own blood sample and did a follow-up endoscopy. (For what it's worth, the endoscopy and biopsies all came back postive, and my levels from Entero were all in the 300's and their "normal range" for each test was "less than ten." No clue what that means.) For me it was a waste of $400 since I ended up at Columbia, anyway.... Hope this helps....

sandsurfgirl Collaborator

At this point we just can't know. I went back and researched a lot of old threads. There are people who have followed his recommendations with no improvement but others who swear by him.

Until he gets his work fully published and goes through all the regular scientific protocol we just don't know.

I'm not sure I want to spend all that money for the reasons already stated. At this point it's a matter of whether you believe in his work and what he says enough to accept the results you get and act on them.

If you have the money then go for it. I mean it's not like the GI docs are doing all that great with the blood tests and biopsies that have all these false negatives and problems for various reasons. If Enterolab's work does prove to be the cutting edge thing for these issues it could be a miracle. The work must stand up to scrutiny though.

happygirl Collaborator

Keep in mind it doesn't diagnose Celiac, but can indicate a gluten sensitivity.

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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
    • Seaperky
      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
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