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. - Scott Adams replied to FannyRD's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Gluten free phosphate binders for dialysis patients

    2. - Scott Adams replied to Cecile's topic in Related Issues & Disorders
      2

      Symptoms

    3. - trents replied to Cecile's topic in Related Issues & Disorders
      2

      Symptoms

    4. - FannyRD posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Gluten free phosphate binders for dialysis patients

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

    • Total Members
      133,180
    • Most Online (within 30 mins)
      7,748

    Eldret419
    Newest Member
    Eldret419
    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

    • FannyRD
      Thanks for the resource! I will check it out!
    • Scott Adams
      You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Living with celiac disease can be especially hard when you’re in a smaller town and don’t have many people around who truly understand it, so you’re definitely not alone in feeling this way. Ongoing fatigue, joint pain, and headaches are unfortunately common in people with celiac disease, even years after diagnosis, and they aren’t always caused by gluten exposure alone. Many people find that issues like low iron, low vitamin D, thyroid problems, other autoimmune conditions, or lingering inflammation can contribute to that deep exhaustion, so it’s reasonable to push your doctor for more thorough blood work beyond just vitamin B. As for eggs, it’s also not unusual for people with celiac disease to develop additional food intolerances over time; tolerating eggs as an ingredient but not on their own can point to sensitivity to the proteins when they’re concentrated. Some people do better avoiding eggs for a while, then carefully testing them again later. Most importantly, trust your body—if something consistently makes you feel awful, it’s okay to avoid it even if it’s technically “allowed.” Many of us have had to advocate hard for ourselves medically, and connecting with other people with celiac disease, even online, can make a huge difference in feeling supported and less isolated.
    • trents
      Welcome to the celiac.com community, @Cecile! It is common for those with celiac disease to develop sensitivity/intolerance to non-gluten containing foods. There is a high incidence of this with particularly with regard to dairy products and oats but soy, eggs and corn are also fairy common offenders. Like you eggs give me problems depending on how they are cooked. I don't do well with them when fried or scrambled but they don't give me an issue when included in baked and cooked food dishes or when poached. I have done some research on this strange phenomenon and it seems that when eggs are cooked with water, there is a hydrolysis process that occurs which alters the egg protein such that it does not trigger the sensitivity/intolerance reaction. Same thing happens when eggs are included in baked goods or other cooked dishes since those recipes provide moisture.  So, let me encourage you to try poaching your eggs when you have them for breakfast. You can buy inexpensive egg poacher devices that make this easy in the microwave. For instance:  https://www.amazon.com/Poacher-Microwave-Nonstick-Specialty-Cookware/dp/B0D72VLFJR/ Crack the eggs into the cups of the poacher and then "spritz" some water on top of them after getting your fingers wet under the faucet. About 1/4 teaspoon on each side seems to work. Sprinkle some salt and pepper on top and then snap the poacher shut. I find that with a 1000 watt microwave, cooking for about 2 minutes or slightly more is about right. I give them about 130 seconds. Fatigue and joint pain are well-established health problems related to celiac disease.  Are you diligent to eat gluten-free? Have you been checked recently for vitamin and mineral deficiencies? Especially iron stores, B12 and D3. Have you had your thyroid enzyme levels checked? Are you taking any vitamin and mineral supplements? If not, you probably should be. Celiac disease is also a nutrient deficiency disease because it reduces the efficiency of nutrient absorption by the small bowel. We routinely recommend celiacs to supplement with a high potency B-complex vitamin, D3, Magnesium glycinate (the "glycinate" is important) and Zinc. Make sure all supplements are gluten-free. Finally, don't rule out other medical problems that may or may be associated with your celiac disease. We celiacs often focus on our celaic disease and assume it is the reason for all other ailments and it may not be. What about chronic fatigue syndrome for instance?
    • FannyRD
      I work as a renal RD and have a Celiac pt which has been rare for me (I might have had 3-4 Celiac pts in 15 years). I wondered if anyone can confirm that these medications are gluten free and safe for Celiac.  Ferric citrate (Auryxia)  Sucroferric oxyhydroxide (Velphoro)  lanthanum carbonate (Fosrenol) sevelamer carbonate (Renvela)   Thank you!
×
×
  • 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.