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. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      results from 13 day gluten challenge - does this mean I can't have celiac?

    2. - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      results from 13 day gluten challenge - does this mean I can't have celiac?

    3. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      results from 13 day gluten challenge - does this mean I can't have celiac?

    4. - Wheatwacked replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      13

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

    5. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      My journey is it gluten or fiber?

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

    • Total Members
      133,368
    • Most Online (within 30 mins)
      7,748

    Helen1984
    Newest Member
    Helen1984
    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

    • catnapt
      during the gluten challenge I did not consume any wheat germ   the wheat germ is TOASTED - it's the only way it is sold now afiak doesn't matter I consume vast amounts of lectin containing foods PROPERLY prepared and have for well over a decade. They do not bother me in the least.    no anemia however the endo who ordered the celiac panel is the one who suggested the 2 week gluten challenge of eating at least 2 slices of bread per day or a serving of pasta- ALSO put me on a new drug at the same time (not a good idea)  I ate 4 slices because they were thin, or 2 English muffins, and just once some lasagna that someone else made since I stopped eating wheat pasta years ago. The English muffins caused some of the worst symptoms but that pc of lasagna almost killed me ( not literally but the pain was extreme) during those 12 days there were at least 3 times I considered going to Urgent Care.   This entire process was a waste of time TBH due to being on that new drug at the exact same time. it is impossible to tell if the drug I am taking for the possible renal calcium leak is working or not- given the dramatic response to the gluten challenge and resulting nausea (no vomiting) and eventually a loss of appetite and lower intake of foods so now I have a dangerously low potassium level   I don't have a simple case of celiac or no- I have an extremely complicated case with multiple variables I am seeing an endocrinologist for a problem with the calcium sensing glands - that system is very complicated and she has been unable to give me a firm diagnosis after many tests with confusing and often alarming results. She also appears to be inexperienced and unsure of herself. but I don't have the luxury of finding a new endo due to multiple issues of insurance, lack of drs in my area, money and transportation. so I'm stuck with her At least she hasn't given up    in any case I can assure you that lectins are not and never were the problem. I know they are a favorite villain in some circles to point to, but I have ZERO symptoms from my NORMAL diet which DOES NOT contain gluten. The longer I went without bread or foods with wheat like raisin bran cereal, the better I have felt. my body had been telling me for several years that wheat was the problem- or maybe specifically gluten, that remains to be seen- and stopping eating it was the best thing I could have done   I almost had unnecessary MAJOR SURGERY due to joint pain that I ONLY have if I am eating bread or related products I assumed it was the refined grains - never really suspected gluten but it does not matter I won't put that poison in my body ever again not that it is literally poison but it is def toxic to me        
    • knitty kitty
      @catnapt,  I'm sorry you're having such a rough time.   How much wheat germ and how much gluten were you eating? Lectins in beans can be broken down by pressure cooking them.  Do you pressure cook your beans?  Were you pressure cooking your wheat germ? What drugs are you taking?  Some immunosuppressive drugs affect IgA production.  Do you have anemia?
    • catnapt
      oops my gluten challenge was only 12 days It started Jan 21s and ended Feb 1st   worst 12 days of my life   Does not help that I also started on a thiazide-like drug for rule in/out renal calcium leak at the exact same time No clue if that could have been symptoms worse 🤔
    • Wheatwacked
      Welcome to the forum @Known1, What reaction were you expecting? Pipingrock.com High Potency Vitamin D3, 2000 IU, 250 Quick Release Softgels $6.89 I've have been taking the 10,000 IU for close to 10 years. When I started with vitamin D I worked my way up to 10000 over several weeks.  Even at 8000 I felt no noticeable difference.  Then after a few days at 10000 it hit Whoa, sunshine in a bottle.  celiac disease causes malabsorption of dietary D and you've poor UV access.  It took me from 2015 to 2019 to get my 25(OH)D just to 47 ng/ml.  Another two years to get to 80.  70 to 100 ng/ml seems to be the body's natural upper homeostasis  based on lifeguard studies.  Dr. Holick has observed the average lifeguard population usually has a vitamin D 3 level of around 100 ng/ml. Could it be that our normal range is too low given the fact that ¾ or more of the American population is vitamin D deficient? Your Calcium will increase with the vitamin D so don't supplement calcium unless you really need it.  Monitor with PTH  and 25(OH)D tests. Because of your Marsh 3 damage you need to ingest way more than the RDA of any supplement to undo your specific deficiencies. I believe you are in the goiter belt.  Unless you have reason not to, I recommend pipingrock's Liquid Iodine for price and quality.  The RDA is 150 to 1100 mcg.  In Japan the safe upper level is set at 3000 mcg.  Start with one drop 50 mcg to test for adverse response and build up.  I found 600 mcg (12 drops) a day is helping repair my body.  Iodine is necessary to healing.  90% of daily iodine intake is excreted in urine.  A Urine Iodine Concentration (UIC) can tell how much Iodine you got that day.  The thyroid TSH test will not show iodine deficiency unless it is really bad.  
    • xxnonamexx
      I don't know if I am getting sufficient Omega Threes. I read about  phosphotidyl choline may cause heart issues. I will have o do further research on heathy Omega 3 supplements or from foods. Is there a blood test that can tell you everything level in your system such as Thiamine, Benfotiamine levels etc? Thanks
×
×
  • 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.