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 Testing


admcs13

Recommended Posts

admcs13 Rookie

I was just wondering if any of you have done it?

I've never had the biopsy done. Back in January I was sent for a blood test where the IGG came back very high. I was told to go for the biopsy, but being personally sensitive to the anesthesia, it would be a problem and I decided not to go for it.

I went gluten-free immediately after the blood test, and after a month, the DH I had my whole life (20 years!) went away along with the other nasty celiac disease symptoms and after 2 months I started to feel like a new person.

However, I would like to go for the Enterolab tests to see if I have any other digestive problems. Has anyone else done it?

Christian


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



Celiac.com Sponsor (A8-M):



celiac3270 Collaborator

I did a bloodtest, then a biopsy.....and came back a positive for both. Although I didn't do the enterolab tests, MANY on the board have, and can probably tell you a lot about them. You don't need to know which tests to do; I believe you're told what would be the best tests to run....and, unlike the biopsy, there are no tubes stuck down your throat :P .

Enterolab tests would be good for you, now, since they work at any time. The biopsy has to be done while on gluten...and having been on gluten for a significant period of time. The same goes for the bloodwork. The great thing about Enterolab testing is that even if you've been gluten-free for years, the tests still work :D ....so your period of gluten-free eating wouldn't screw up the Enterolab test results. Anyway, I hope that I have semi-addressed your question. Someone will come along soon enough who has been tested through Enterolab and I hope they can be of more assistance. :)

-celiac3270

tarnalberry Community Regular

Just FYI, what I have read on the boards is that Enterolab's stool test for antibodies does NOT work if you have been gluten-free for a very long time. (I recall someone posting a response from Dr. Fine (or it was on his website) that he suggests the tests won't pick up antibodies if you've been gluten-free for a year or so.) Of course, if you've only been gluten-free for a month or two, he does say the test will pick it up.

I haven't used them, but I'm one of the boards few big skeptics on the lab. ;-)

Guest jhmom

I am not a teenager but my 8-year-old daughter and me were tested through Enterolab and I FULLY trust Dr. Fine and what he is doing!

I took the conventional route and had blood work and biopsy through a Gastro doc but I guess I was not sick enough or sick long enough for it to show up in my blood. After being told I had IBS and I knew I didn

flagbabyds Collaborator

Personally I don't think you need to have the tests done. i can understand why you want to but they cost a lot and also if you feel better that is a test within itself. I think the diet improment is the best test. It doesn't involve paying and no tubes anywhere or having to do stool tests, Just my opinion.

celiac3270 Collaborator
Personally I don't think you need to have the tests done. i can understand why you want to but they cost a lot and also if you feel better that is a test within itself. I think the diet improment is the best test. It doesn't involve paying and no tubes anywhere or having to do stool tests, Just my opinion.

A good point....you said that you've had a blood test done. If that gives you enough confidence that you have it, that's all that really matters. Some people never get any kind of formal diagnosis, but try the diet out of desperation from their situation. If a bloodtest is already enough evidence in your mind, Molly's correct: you don't need more testing.

-celiac3270

P.S. Thank you for the correction on how long the tests are accurate, Tiffany. I have minimal knowledge of enterolabs....just the little bit I've remembered from others' testimonials. Just out of curiosity, what is it that you most doubt about Enterolabs?

tarnalberry Community Regular

celiac3270, my resistance on Enterolab comes primarily from the fact that Dr. Fine isn't publishing peer-reviewed research on his method and making it available for other researchers to study. I don't particularly question his laboratory method - and his theory of stool testing makes quite a bit of sense, really - but I have an ethical problem (from the point of view of the scientist) with how he behaves with respect to his testing outside of the laboratory. This is based on reading what he's written on his website and what he's written back to people who have posted their email conversations with him - and I get the impression that he doesn't feel he should have to have his theory peer-reviewed, and that there may be some business motive for keeping the work he's done more "secret". I could be totally wrong on this - I do not mean to slander him in any way, and I understand that he has been very responsive talking to people who email or call him with questions. This is merely an impression of the man that I have formed over time. And the scientist in me simply cannot accept capitalistic reasons for hoarding scient. It's idealistic, I know, but there ya have it. ;-)

I do not mean to discourage anyone from using them, and don't question anyone who has relied on his testing for their diagnosis, but as I believe in spending my money where I fully support what I'm spending it on, I'm not willing to spend it there.


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



Celiac.com Sponsor (A8-M):



  • 1 month later...
Racheleona Apprentice

Does anybody know the accuracy percentage of this test? Also, about how much is it? Does any insurance cover it? Thanks

Rachel

burdee Enthusiast

Hey Rachel:

Check out www.enterolab.com which describes various tests, prices and maybe test accuracy. I haven't read their website information in awhile, but I did their tests in June about 2 months after going gluten-free. WARNING: I'm very PRO Enterolabs. :lol: I was suffering sooooo much pain when I first suspected I had celiac disease and was so relieved when going gluten-free took my painful symptoms from excruciating to tolerable, that I would NOT submit myself to 'gluten' loading for a blood or biopsy test. So I was grateful to learn Enterolab's tests did not require gluten loading. I chose E-lab tests because I was still suffering 'symptoms' even after eliminating as much gluten as I could. I ordered the whole package which included a milk sensitivity test. I'm sooooo glad I did, because I knew I had lactose (milk sugar) intolerance but never suspected I had casein (milk protein) intolerance. My gluten reaction symptoms are very painful, but my casein reactions affect more body systems than gluten. I never met such caring, concerned lab personnel as Dr. Fine and his 'crew' at Enterolab. I would highly recommend E-lab testing to anyone who doesn't need their doctor's permission to follow the gluten-free approach, but still wants to test for malabsorption, celiac gene or milk sensitivity. However, I agree that relief from symptoms after going gluten-free is a conclusive test for gluten intolerance.

BURDEE

Alexolua Explorer

Tiffany, he mentioned this to me in an email:

An Italian group has published Fecal testing similar to what we do.

My study is being concluded and written currently.

So maybe that study he mentioned will be published and peer reviewed?

No idea.

I'm kinda pro E-lab too, and they respond quick to emails, least in my experience.

cdobbs Rookie

myself and two children were tested thru enterolab. my 2yr old and myself came back with celiac disease and 5yr old came back with gluten sensitivity. they dont except ins claims but they did say you could file it on your own to your ins company. the cost of ours was around 180.00 a piece. it was very easy and the results came back within 3 weeks. from what i understand is that their tests are very accurate. we chose to go that route after my father was diagnosed with celiac disease. i didnt want my children to go thru the mormal invasive biopsy. also, their pediatrician didnt want them to be tested bc they are to young she said but i wanted it anyways. also, my brother and mother were tested thru enterolab. my mom came back with gluten sensitivity and my brother had nothing. if you want to get the test done, im all for enterolab. plus if you need to speak to dr fine directly all you have to do is email him and he responds. that was impresive to me. i didnt have to make an appt to actually speak to a dr. weel goodluck with all

christi

flagbabyds Collaborator

I actually agree with Tiffany because he has never told people the percentage of people diagnosed. that's just my opinion

tarnalberry Community Regular

Yes, I had heard that he's been working on a study for publishing this year, but I'm still waiting for it to come out. I know from my research experience that it may take a while, and that it doesn't mean a lot (from the scientific research world) until it comes out and other people get to independently confirm it. ;-)

An article about the Italian research came up a few months ago, but without any of the details of exactly what Enterolab's processes are, there's no way to compare them to the published Italian work, and independently say whether or not the tests are similar. They may well be, of course. I'm not trying to say that they're not! :-)

And I've never actually seen a number for the accuracy of their tests, and I think it's because of the way it's been used. Perhaps that will be part of his study. If it's like what I've read of the Italian work, it's probably fairly high. Anecdotal evidence suggests that it's very accurate, but that's just anecdotal.

(My usual disclaimer: I'm not personally against Enterolabs. I completely respect the decision to use them, and suspect that - in time, and with further studies - their laboratory methodology will be verified. But I'm trained as an applied physicist, and merely quibble with their process and the lack of open, shared, peer reviewed and independently verified research. That's all. I'm glad they've given a useful piece of information to so many of the people on the board that has helped their lives so much.)

  • 1 year later...
Cheryl Gainer Newbie

Hello All!

Dr. Fine has posted his slide show from his March 2006 conference and it gives his rates of positives and negatives. I attended and it was a great conference. I am still waiting for the DVD I ordered, but located the lecture slides here:

Open Original Shared Link

Enjoy!

Cheryl

celiacgirls Apprentice

I am another one who is very pro Enterolabs. My youngest daughter was tested several times over the years by blood tests and was always negative. My grandmother had gold standard biopsied celiac so I was never convinced that my daughter didn't have it. She also responded well to the the gluten-free diet. When I read on this board about Enterolab, I decided to do it just to know for sure. She was positive.

I tested myself and my other daugher and we were also positive. For my older daughter, I tested her for casein intolerance and it was also positive. I have since ordered the casein intolerance test for myself and my younger daughter.

My daughter and I did not have symptoms of celiac or gluten intolerance but both of us feel much better, now. I have been able to stop taking an antidepressant and my daughter is much easier to get along with and seems much happier. She has a new sparkle in her eye. She is still taking antidepressants but I am hoping she will be able to get off from them as well.

I would recommend his test to anyone if they have a need for something more than a positive dietary response.

AndreaB Contributor

The slide show is good, thank you Cheryl.

Out of my family thats been tested (no symptoms), my husband and I came back soy intolerant and my daughter, oldest son and I came back gluten intolerant. My youngest son has not been tested yet. I am also pro enterolab and like them for the fact that you can get results before you get really sick and have all the other health problems that come up with a more advanced case of celiac or gluten intolerance.

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. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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

    • Total Members
      133,329
    • Most Online (within 30 mins)
      7,748

    klkarius
    Newest Member
    klkarius
    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
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.