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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Rejoicephd commented on Scott Adams's article in Origins of Celiac Disease
      8

      Do Antibiotics in Babies Increase Celiac Disease Risk Later in Life? (+Video)

    2. - knitty kitty replied to Known1's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Reverse Osmosis (RO) Water

    3. - Yaya replied to Yaya's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Great Value Veggies cannot be trusted.

    4. - Known1 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Reverse Osmosis (RO) Water

    5. - Known1 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      What would you do - neighbor brought gluten-free pizza from Papa Murphy's

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

    • Total Members
      133,443
    • Most Online (within 30 mins)
      7,748

    Squirrel75
    Newest Member
    Squirrel75
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      I've heard RO water is bad, too.   Distilled water has all the minerals distilled out of it, so it will pull minerals out of your bones, too.  I only use distilled water to fill up my clothes iron so it won't get mineral deposits inside and quit working. I drink mineral or spring water.  
    • Yaya
      Scott.  Thank you for your reply. I'm still having symptoms, but significantly better.  I will go back to batch cooking and freezing vegetables.  I have had success with Pict Sweet frozen, single item (not mixed) vegetables.  My Kroger carries very little Pict Sweet variety. Regards, Yaya
    • Known1
      I am hesitant to post this as I have seen many people here recommending RO water.  With that said, I want to share my experience and how RO water now impacts me.  Three or four years ago a local store installed a RO water refill station.  I had been buying gallons of distilled and spring water prior to that.  I switched over to using the RO water refill station saving money by brining in my own clean empty gallon jugs.  Every 6-months I would replace the jugs by buying new gallons of distilled water.  This RO water is the only water I would drink while at home.  Two huge glasses every morning before work and two more after work.  I would also use the RO water to make coffee and hot coco. This past December, prior to my celiac diagnosis, my gut was making more noise than anything I had ever experienced.  Seriously, it was crazy, almost like fire works going off in my stomach.  I happened to pick up some distilled water for my 6-month jug rotation.  Literally, as soon as I started drinking the distilled water my stomach settled a great deal.  I could honestly feel the difference after the first glass of water.  I thought that maybe the RO water from the store's refill station was contaminated with some sort of cleaning agent.  I swore to myself I would never drink from that RO refill station again.  Instead I went back to buying distilled along with gallon jugs of spring water.  No issues with either of those as far as an upset stomach is concerned.  Cost, well that's a different story all together. After being diagnosed marsh 3c, I went shopping at Aldi's for the first time in my life.  I noticed they also sell water by the gallon.  Over the course of the last few weeks, I have purchased a total of 6-gallons of their water.  (Thankfully they were out on two of my visits.)  After having my stomach starting to make noises similar to mid-December again, it dawned on me, maybe its the Aldi water?  Initially I had contributed my bubble gut to some sort of gluten exposure or cross contamination.  Even though everything I have put into my stomach is naturally gluten-free or has been labeled gluten-free / certified gluten-free.  I had assumed that the Aldi water was spring water.  Come to find out, that was a bad assumption.  Looking close at the label it says purified by RO or distillation (or something like that). Again, I switched to different water.  Just like last December, the non-RO water instantly calmed my stomach and even felt better going down the hatch.  This was earlier today by the way.  Prior to creating this post, I did a few searches via Uncle Google.  I bumped into a thread on Reddit (where I am not a member) that has multiple people complaining of GI issues related to RO water.  So my initial thoughts on a cleaning agent in the refill station RO water were likely not correct.  Unfortunately, it seems the RO water itself causing me problems.  I am not sure if we are allowed to post links to other sites and hopefully I will not get into trouble for doing so.  I did try printing the Reddit thread to a PDF file.  Unfortunately, the file is 2MB in size, which is well over the 500KB file attachment limit here on this amazing forum.  Again, hopefully this is ok.  🤞  Here is the Reddit thread. This may not be a popular opinion here, but personally, I will not willingly drink another glass of RO water for the remainder of my life.  Who knows, maybe drinking RO water for the past several years is part of what activated my celiac?  No proof, but just a thought.  Come to find out RO water is well known to leech minerals from your body.  With people like us often lacking minerals to begin with, RO water does not seem like a wise choice.  As the Reddit thread mentions, there are RO water filtration systems that will inject minerals back into the water.  However, those systems are likely not being used at the grocery store refill stations nor by the bottling companies producing RO water for sale at your local store. Please do not shoot the messenger as I am just sharing my personal experience and letting others know that most RO water will leech minerals from your body. God bless and stay well, Known1
    • Known1
      My neighbor's mom was diagnosed with celiac disease 16 years ago.  She is a very kind person and has shared some info about local grocery stores and daily (soon to expire) meat deals.  This evening she brought over 2 slices of Papa Murphy's gluten-free pizza.  It looks to be topped with chicken and spinach.  I asked, "aren't you concerned with cross contamination"?  She said no and apparently eats it on a somewhat regular basis. I found an old article here along with another thread pertaining to Papa Murphy's gluten-free pizza.  The article is quite old, so I do not think it holds much weight nowadays.  The thread I found was also a bit dated, but certainly more recent and relevant.  The information in the thread I found was a bit inconclusive.  Some said they trust Papa Murphy's gluten-free pizza and others were a big no way.  One person even took time to train their local franchise on how to ensure the pizza remains gluten-free without cross contamination. Anyway, being recently diagnosed as marsh 3c, I am currently working on week 3 or 4 in my new gluten-free journey.  I do not want to be rude and toss the pizza out, but I also do not want to have a reaction.  Since she has celiac and obviously ate much or at least some of the pizza, I am leaning towards eating the two slices for lunch tomorrow.  As this thread's title states, what would you do?  Would you eat it or toss it out?  I suppose I could also just give it back to my neighbor to polish off. I look forward to reading your thoughts. Thanks, Known1
    • Scott Adams
      That must have been really upsetting to discover, especially after relying on a product you believed was safe. Labeling can change at any time due to supplier shifts or shared equipment, so it’s always important to double-check packaging—even on products we’ve trusted for years. A “may contain wheat” statement usually indicates potential cross-contact risk rather than an added ingredient, but for people with celiac disease that risk can still be significant. If you’ve been having symptoms, it may take days to weeks to fully settle, depending on the level and duration of exposure. In the meantime, switching to fresh produce or brands that clearly state gluten-free status is a reasonable step. It may also help to contact the manufacturer directly to ask when the labeling changed and what their current cross-contact controls are.
×
×
  • 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.