Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Enterolab - I'M Skeptical

LJ-Mom

By LJ-Mom
in Coping with Celiac Disease

Recommended Posts

LJ-Mom Rookie
LJ-Mom
Posted

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?

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Jestgar Rising Star
Jestgar
Posted

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
Sunshine24
Posted

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
sandsurfgirl
Posted

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
happygirl
Posted

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

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      130,330
    • Most Online (within 30 mins)
      7,748
    TamSta214
    Newest Member
    TamSta214
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • somethinglikeolivia
      Am I celiac or not?

      By somethinglikeolivia · Posted

      Responding to both of your replies: thank you so much!! That makes a lot of sense and helps me feel better about it - I really appreciate the clarification and recommendations. You guys have been very helpful and this site is a gift. Thanks again! 
    • trents
      Am I celiac or not?

      By trents · Posted

      I think giving attention to the main sources of exposure such as direct consumption of gluten and gross cross contamination with reasonable attention to handwashing and thorough counter top cleaning and dishwashing should cover cross contamination issues. The biggest precautions would be eating in restaurants and at other's homes. Don't get paranoia over it and don't make trouble where there is none. As far a what you communicate with your physicians, just tell them what you know. Strongly positive antibody tests, negative biopsy, positive symptoms when consuming gluten with clearing of symptoms when gluten free.  
    • trents
      Am I celiac or not?

      By trents · Posted

      Occasionally we do see anomalies where celiac antibody tests are positive but biopsies are negative, and even visa versa. Sometimes, damage to the small bowel lining is patchy and unless numerous samples are taken from various areas, the damage can be missed. So, there's that issue as well. I think in your situation, the tell-tale indicator is the difference in symptoms between when you were off gluten and when you were consuming it.   
    • somethinglikeolivia
      Am I celiac or not?

      By somethinglikeolivia · Posted

      Okay, that makes sense - so based off of the 90% odds that it is positive, it’s worth switching to fully gluten-free? How strict do I need to be with cross-contamination, handling, etc. Is it something that can go by feel, for instance if I feel okay making my family sandwiches and handling the bread as opposed to eating it, or is it something that is causing silent damage even if I feel fine? Also, do I make it clear to my rheumatologist and other medical providers that I am celiac? Or will they veto that due to negative endoscopy? Thanks again for the help!
    • Scott Adams
      Am I celiac or not?

      By Scott Adams · Posted

      If you look at the article that I shared you will notice that "The test is estimated to have a sensitivity of approximately 90%, which means that it correctly identifies 90% of people with celiac disease. It also has a high specificity of around 95%, which means that it correctly identifies 95% of people who do not have celiac disease," so your results indicate that you very likely have celiac disease, especially if you also have symptoms while eating gluten that go away when you stop eating it (although many celiacs don't have obvious symptoms).
×
×
  • Create New...