Jump to content
  • 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 Accuracy


JustMe75

Recommended Posts

JustMe75 Enthusiast

Does anyone know how accurate Enterolab results are? I see everyone on here talk pretty highly about them, but I am concerned that everyone seems to test positive. Does everyone with stomach problems test positive because our bodies are reacting to something we eat or is it truly a gluten reaction? I am skeptical about everything not just this. I was about to place my order for the test and thought I'd see if anyone knew how accurate the test is. Also, which test(s) should I order?


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



Celiac.com Sponsor (A8-M):



AndreaB Contributor

I had the whole test panel ordered for my family. If you want to save money just get the gene test and try the diet. If you want something on paper (email) then order the full panel (I think it's $250-$350). I forget the exact amount. It includes the gene test.

I think they are pretty accurate as far as your body's responses. If you have underlying problems causing the intolerances it wouldn't tell you that. (ie, metals, fungal issues, lyme etc)

My family's intolerances are more than likely due to metals. We all have celiac genes so we will in no way be going back to a gluten diet.

mftnchn Explorer

There have been people here who have posted negative results, and your question about this has been asked before here on the forum. You might do a search and see.

I think it is pretty reliable after looking up Dr. Fine's background and record, and reading another poster's comments who works in a laboratory and looked over the whole thing. I think it is important to realize that they pick up sensitivity to gluten and other things they test for, but don't diagnose the cause (such as celiac).

This is the test I had, and I am still on the recovery process, but I think it is proving true.

EBsMom Apprentice
Does anyone know how accurate Enterolab results are?

Well....it's only anecdotal evidence, but in our case, they seemed to be accurate. Everything the tests "said" was supported by what we saw IRL. My dd was getting very sick, with horrible reflux, gas, bloating, D, decreased energy, pallor, dark circles under her eyes. Her pedi wasn't taking it all that seriously....just wanted to put her on meds for the reflux. On the suggestion of a friend, whose child has celiac disease, we eliminated gluten from her diet. She started to improve immediately. A week later (on suggestion of the same friend) I sent for the Enterolab test. Before the results even came back, we figured out that she was having problems with dairy and eliminated that from her diet as well. Then the results came back positive across the board - she's intolerant of gluten/casein, had an elevated fecal tTg and high fecal fat. Those results only supported what we were seeing with our own eyes.

Later, my ds and I were tested also. I never had major symptoms - lots of vague ones - and my ds's symptoms were all neurological. We both tested positive as well (though not with numbers as high as my dd's.) Both of us are doing so much better off the gluten (and off the casein for me) that it's made a believer out of me. When I get accidentally glutened, I have awful stomach pains, head fog, irratability and C that lasts for several days. As I said before - the Enterolab results bear out what we're seeing and living IRL. That's my only "proof" that the Enterolab tests are accurate.

Rho

hathor Contributor

This is what Dr. Fine has written:

Open Original Shared Link

We keep hoping he will publish. Perhaps he is doing long term followup on his patients, is busy, or is dealing with medical journals that have difficulty publishing things that aren't in the regular medical paradigm. (For instance, I just learned about the difficulty getting published that was experienced by the researchers who found that mammograms didn't affect mortality. No one in the US would publish it. So they went to the Lancet finally, which had no problem with the study.)

There are people who test negative. I think we hear more about those who test positive because they are the ones that continue on posting on this board B)

The fact is, you have to look at your alternatives. Blood testing has a rather significant rate of false negatives, plus you have to have been eating gluten for some time for them to be meaningful.

People report here having positive test results, avoiding gluten, and feeling better. I'm another one in that category. Would I prefer to have a diagnosis based upon a test supported by peer-reviewed and replicated research? Yes. But I also want to be well and have to take what is out there now. Given my genes, many doctors would say that I can't have a problem with gluten to begin with, but my body begs to differ.

Puffin Newbie

I had my doubts about the test and the low scores I received but the improvements in my life after finding all my food intolerances has been dramatic. Gluten being the most severe.

I believe elimination of gluten for at least 4 weeks will confirm Enterolab results.

The person who mentored me is the President of the Montana Celiac society; she told me that the diet would be the best test.

I needed more so I did Enterolab and waited seven weeks to start the diet until I got the results back; in retrospect I suffered needlessly and should have started the diet immediately after sending in my test. I went through 8 days of withdrawal and on the 9th day started feeling better.

Archived

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

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,199
    • Most Online (within 30 mins)
      7,748

    Andrea Spencer
    Newest Member
    Andrea Spencer
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Scott Adams
      Celiac disease is the most likely cause, but here are articles about the other possible causes:    
    • xxnonamexx
      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.