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

Questions About Enterolab


sandsurfgirl

Recommended Posts

sandsurfgirl Collaborator

I really really don't want to start a debate here but I have some questions before I use Enterolab for myself and I haven't found the answers to them when I've searched.

I heard of Enterolab before I came on here. I admit I'm skeptical, but at the same time I'm skeptical of everything used to diagnose celiac and food intolerances because it's all fraught with inconsistencies.

I went back and read a whole bunch of old threads and posts about the letter sent to Dr. Fine a long time ago and him getting his work published.

I'm confused about what that all means. Where are they in terms of being accepted by the mainstream docs? Has his work been peer reviewed yet and what have the conclusions been?

Also, are his study methods considered sound?

I worry that have a pro-celiac bias and that everyone that sends their kit in gets diagnosed with celiac and food intolerances if that makes sense. I want to believe that he is onto something big here and that his method can save people heartache and invasive procedures and confusion forever, but I also have to pay out of pocket for it and I have my reservations. I want to know that it's sound science not my belief because otherwise I won't be able to accept the diagnosis as valid.


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



Celiac.com Sponsor (A8-M):



runningcrazy Contributor

I really really don't want to start a debate here but I have some questions before I use Enterolab for myself and I haven't found the answers to them when I've searched.

I heard of Enterolab before I came on here. I admit I'm skeptical, but at the same time I'm skeptical of everything used to diagnose celiac and food intolerances because it's all fraught with inconsistencies.

I went back and read a whole bunch of old threads and posts about the letter sent to Dr. Fine a long time ago and him getting his work published.

I'm confused about what that all means. Where are they in terms of being accepted by the mainstream docs? Has his work been peer reviewed yet and what have the conclusions been?

Also, are his study methods considered sound?

I worry that have a pro-celiac bias and that everyone that sends their kit in gets diagnosed with celiac and food intolerances if that makes sense. I want to believe that he is onto something big here and that his method can save people heartache and invasive procedures and confusion forever, but I also have to pay out of pocket for it and I have my reservations. I want to know that it's sound science not my belief because otherwise I won't be able to accept the diagnosis as valid.

Well I cant answer all your questions, but.

My mom, sister, and I were all tested thru enterolab. I came back positive for one of the gluten things, negative for casein and high negative for another one for gluten. My fat malabsorption was in normal range. My mom came back positive for EVERYTHING, with her fat malabsorption being about 4x the normal. My sister on the other hand came back negative on everything and it even said that there is no evidence of a gluten issue. (lucky her)

So not everyone who is tested comes back positive, thats not what they are for. We were looking at a celiac book and different methods of testing and it did have a small section about genes and stool testing and it mentioned Dr. Fine. I dont think its a fraud or scam or anything like that, especially since i finally got answers after 3 negative blood tests.

Korwyn Explorer

I really really don't want to start a debate here but I have some questions before I use Enterolab for myself and I haven't found the answers to them when I've searched.

I heard of Enterolab before I came on here. I admit I'm skeptical, but at the same time I'm skeptical of everything used to diagnose celiac and food intolerances because it's all fraught with inconsistencies.

I went back and read a whole bunch of old threads and posts about the letter sent to Dr. Fine a long time ago and him getting his work published.

I'm confused about what that all means. Where are they in terms of being accepted by the mainstream docs? Has his work been peer reviewed yet and what have the conclusions been?

Also, are his study methods considered sound?

I worry that have a pro-celiac bias and that everyone that sends their kit in gets diagnosed with celiac and food intolerances if that makes sense. I want to believe that he is onto something big here and that his method can save people heartache and invasive procedures and confusion forever, but I also have to pay out of pocket for it and I have my reservations. I want to know that it's sound science not my belief because otherwise I won't be able to accept the diagnosis as valid.

I, my wife, my Dad, and one sister have all been tested through Enterolab.

My results were positive for tTG, gliadan IgA, and Casein IgA, no fat malabsorption, DQ8 and DQ2. My Dad showed positive tTG, gliadin IgA, negative Casein (<10), no fat malabsorption, double DQ8. My wife was positive gliadin IgA, negative tTG, positive Casein, negative fat, DQ8 and DQ6. My sister was positive gliadin, tTG,, Casein, fat malabsorption, DQ8 and DQ2.

These were all done at different times (over a 2 month window) and the only common last name on them was my wife and mine.

There is sound science behind it as far as I can determine but I don't know why he hasn't published his paper or research. I have read two other books that refer to fecal antibody testing, including Dr. Green's book.

LJ-Mom Rookie

I, my wife, my Dad, and one sister have all been tested through Enterolab.

My results were positive for tTG, gliadan IgA, and Casein IgA, no fat malabsorption, DQ8 and DQ2. My Dad showed positive tTG, gliadin IgA, negative Casein (<10), no fat malabsorption, double DQ8. My wife was positive gliadin IgA, negative tTG, positive Casein, negative fat, DQ8 and DQ6. My sister was positive gliadin, tTG,, Casein, fat malabsorption, DQ8 and DQ2.

These were all done at different times (over a 2 month window) and the only common last name on them was my wife and mine.

There is sound science behind it as far as I can determine but I don't know why he hasn't published his paper or research. I have read two other books that refer to fecal antibody testing, including Dr. Green's book.

Thanks for the clarification

Korwyn Explorer

Doesn't it make you suspicious that your wife had positive results? (though I don't know exactly what those results mean) You and she are not blood related - and if these types of issues affect ~1% of the population this says to me the test is not legit.

Not really for a couple of reasons: Several other tests she has had done show gluten intolerance and no Celiac (which is consistent with the Enterolab results). Also she has been Elisa/ACT and dietary tested and shown intolerance for gluten and cow's milk (also consistent with the Enterolab). This would possibly be accounted for by both the DQ6 and DQ8. 30% of the North American population carries either DQ8 or DQ2 which is significantly different than the estimated 1% of population afflicted by undiagnosed celiac disease. Additionally her Father has Parkinson's which has been show to have potential linkage in European studies (European Neurology 2003 Vol 50 Issue 2, Lampe, Gossrau, et. al.) to DQ6. There is also some family history in her siblings and her daughter (my stepdaughter) and grandchildren which would indicate a strong likelyhood of active celiac disease. We really wish we could get them to go to the Dr. for testing, esp on both our grandsons. :(

Korwyn Explorer

So not everyone who is tested comes back positive, thats not what they are for. We were looking at a celiac book and different methods of testing and it did have a small section about genes and stool testing and it mentioned Dr. Fine. I dont think its a fraud or scam or anything like that, especially since i finally got answers after 3 negative blood tests.

Also, one of the things you need to think about is that since Enterolab and Prometheus both do not take private insurance by the time people get to this point they are usually fairly certain they have at least Gluten Intolerance, if not Celiac Disease. So you have essentially a self-selecting test group that is already filtered to an abnormally high incident rate.

bluebonnet Explorer

i am waiting to hear back any day now from enterolab on my results. i did my research and had doubts and concerns but i did settle on using them for a couple of reasons. first, my own doctor did bloodwork but also told me celiac just isn't something they look for or suspect until it has been years. plus, bloodwork isn't very accurate no matter how long or how many symptoms you may have. (i have just about every symptom and have for about 14 years that have become worse and done more damage with no firm diagnosis from any doctors i have been to.)

second, i feel like stool testing is way more accurate on detecting what is going on inside the body. stool samples are used to detect other diseases.

i also didn't want to go through the endoscopy if i didn't have to. everyone with these serious and dibilitating health issues that have not discovered the "link" to their cause needs answers. enterolab is another way to confirm a positive or negative. if you've suspected gluten and are having a positive response to going off then that is also a confirmation. since discovering gluten could be my cause of sickness i chose them as my "second opinion". the doctor said my bloodwork came back "at best, okay". i need a more firm diagnosis. a postive diet response is enough for many people, but i want to also put my mind at rest with a genetic test especially after all these years. plus, i have kiddos and would want to know for their sake as well.

after my research, they seem to just want to help people be well. best wishes! :)


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



Celiac.com Sponsor (A8-M):



LJ-Mom Rookie

I, my wife, my Dad, and one sister have all been tested through Enterolab.

My results were positive for tTG, gliadan IgA, and Casein IgA, no fat malabsorption, DQ8 and DQ2. My Dad showed positive tTG, gliadin IgA, negative Casein (<10), no fat malabsorption, double DQ8. My wife was positive gliadin IgA, negative tTG, positive Casein, negative fat, DQ8 and DQ6. My sister was positive gliadin, tTG,, Casein, fat malabsorption, DQ8 and DQ2.

These were all done at different times (over a 2 month window) and the only common last name on them was my wife and mine.

There is sound science behind it as far as I can determine but I don't know why he hasn't published his paper or research. I have read two other books that refer to fecal antibody testing, including Dr. Green's book.

Doesn't it make you suspicious that your wife had positive results? (though I don't know exactly what those results mean) You and she are not blood related - and if these types of issues affect ~1% of the population this says to me the test is not legit.

Korwyn Explorer

Doesn't it make you suspicious that your wife had positive results? (though I don't know exactly what those results mean) You and she are not blood related - and if these types of issues affect ~1% of the population this says to me the test is not legit.

Not really for a couple of reasons: Several other tests she has had done show gluten intolerance and no Celiac (which is consistent with the Enterolab results). Also she has been Elisa/ACT and dietary tested and shown intolerance for gluten and cow's milk (also consistent with the Enterolab). This would possibly be accounted for by both the DQ6 and DQ8. 30% of the North American population carries either DQ8 or DQ2 which is significantly different than the estimated 1% of population afflicted by undiagnosed celiac disease. Additionally her Father has Parkinson's which has been show to have potential linkage in European studies (European Neurology 2003 Vol 50 Issue 2, Lampe, Gossrau, et. al.) to DQ6. There is also some family history in her siblings and her daughter (my stepdaughter) and grandchildren which would indicate a strong likelyhood of active celiac disease. We really wish we could get them to go to the Dr. for testing, esp on both our grandsons.

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

    2. - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

    3. - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    4. - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    5. - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,084
    • Most Online (within 30 mins)
      7,748

    bigwave
    Newest Member
    bigwave
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • AlwaysLearning
      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    • Colleen H
      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
×
×
  • 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.