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

Promethius Lab Vs Enterolab


MammaW

Recommended Posts

MammaW Newbie

Just wanted to see if anyone had any thoughts about testing....My friend who is a dietician recommends Promethius lab for testing. I asked her what she thought about Enterolab and she just said she was not familiar with it. I see that Prometheus is more expensive, but has anyone had any experience with one or the other being recommended? Any differences besides the cost? I am going to argue with my insurance company to cover the cost for our whole family.

www.prometheus-labs.com

Thanks for the input


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



Celiac.com Sponsor (A8-M):



momandgirls Enthusiast

We had genetic testing done through Promethius. They were very professional on the phone (and I had many questions) and the test results came quickly and were easy to read. My insurance covered the cost (though I did call them before hand to get the cost authorized). Personally, I do not trust Enterolab (never published results, not affiliated with any hospital or medical center, etc.) - others here have used them - I don't believe I've heard of anyone's insurance covering their cost.

MammaW Newbie

Thanks for the info...I think I am going to try to go with Prometheus if I can get my insurance to cover

Piccolo Apprentice

I saw a GI doctor for the first time. He decided to run blood tests. Everything came back normal and I did not carry the gene. I also had been gluten free for a year. The lab was Prometheus. I got stuck with a bill if about $700.00 that I am working on paying off. Tons of fun.

Susan

momandgirls Enthusiast

My insurance had no problem covering the cost of Prometheus for my daughter and I. This is how we did it. I called Prometheus first and they gave me the insurance codes of the genetic tests. Then, I called my insurance company, told them the doctor ordered the tests and told them the codes that Prometheus gave me. She told me over the phone the insurance would cover the test. I wrote down the name of the person, date and time of the call with the insurance company. They must have covered it because I never got a bill and that was over a year ago. Just make sure you get a preauthorization before the test is done and you should have no problems.

Ursa Major Collaborator

I don't believe Prometheus Labs will test for the gluten intolerance genes, only for the 'official' celiac disease genes. If you don't have those, you'll never know if you are non-celiac (according to today's standard) gluten intolerant.

Enterolab tests for all of those genes. I'd go with them any day. Plus, they are less expensive.

I have heard of a few people here who's insurance covered the Enterolab costs, by the way.

mamaloca2 Apprentice

Promethius is the only one that has credibility with any of the doc's I've talked to. Enterolab does not have enough scientific evidence out there to back it up and my gastro specialist called them scam artists. I don't know if that's true, but if you are looking for the offical "proof" of celiac disease, you need to go with prometheus.


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



Celiac.com Sponsor (A8-M):



Ursa Major Collaborator

Enterolab uses the same lab for the gene test as everybody else. Except that they include more genes in it. So, how does that make it less reliable then?

momandgirls Enthusiast

Prometheus uses its own lab. It uses blood for genetic testing. Enterolab uses stool samples. Enterolab has no credibility because Dr. Fine has never published any of his findings and he is not affiliated with any major medical center or hospital. Until he has published his findings or even had some peer reviews, he will never be deemed credible by the medical establishment in this country. I know many on this forum believe them...I am one who does not.

Ursa Major Collaborator
Prometheus uses its own lab. It uses blood for genetic testing. Enterolab uses stool samples. Enterolab has no credibility because Dr. Fine has never published any of his findings and he is not affiliated with any major medical center or hospital. Until he has published his findings or even had some peer reviews, he will never be deemed credible by the medical establishment in this country. I know many on this forum believe them...I am one who does not.

Enterolab uses a cheek swab for genetic testing, as in DNA sample, not a stool sample.

And you know, if we'd all believe only people who have published stuff (and who says that those published findings have any value?), and the conservative medical community, a lot of us would still be sick.

Conventional medicine has completely failed me for more than fifty years. That is why I am as sick as I am right now.

Personally, I'll believe somebody like Dr. Fine over most other researchers any time. What he says makes perfect sense. Lets test where the problem is, rather than waiting until the villi are destroyed and the antibodies show up in the blood because of a leaky gut.

momandgirls Enthusiast

Ursa Major - It's not worth fighting with you...you are certainly entitled to your opinion...just as I am to mine.

Ursa Major Collaborator
Ursa Major - It's not worth fighting with you...you are certainly entitled to your opinion...just as I am to mine.

Yes, that is true. The only reason I bother saying anything is, that people like you will turn people away from the only place who will diagnose them if the medical establishment fails them. If they don't believe Enterolab is valid, they'd have nowhere to go.

Many, many people here tested negative on the conventional tests, and positive with Enterolab. After going gluten-free they got well, completely validating Dr. Fine's testing methods as far as I am concerned.

happygirl Collaborator

I'd go with Prometheus.

confused Community Regular
Yes, that is true. The only reason I bother saying anything is, that people like you will turn people away from the only place who will diagnose them if the medical establishment fails them. If they don't believe Enterolab is valid, they'd have nowhere to go.

Many, many people here tested negative on the conventional tests, and positive with Enterolab. After going gluten-free they got well, completely validating Dr. Fine's testing methods as far as I am concerned.

completely agree, i for one do not think they are unreliable, i tested threw blood and enterolab, so they cant be a scam. I am even one of them that does not have the 2 main celiac genes.

paula

hathor Contributor

Well, I guess I would call those doctors who won't or don't think to test for celiac (the average length of time to diagnosis in this country is 11 years), who just label folks as having IBS or psychological issues, who tell folks with negative tests that they can't be celiac or gluten intolerant (overlooking false negatives and the complete gamut of possible problems), who run tests after a patient has been gluten-free (when such tests are useless), who still think celiac is rare or only has certain classic presentations, and the like are the true scam artists. I have read on this board of so many of them out there.

I don't believe that those on this board who have been told by doctors that they are fine but who then improve on a gluten-free diet -- and happen to have positive Enterolab tests -- are making it up.

Yes, it would be great if Dr. Fine would publish. He has fine credentials and has at least explained his work. In the meantime, those who don't have the "correct" celiac genes or who had positive responses to the diet and are unwilling to go back on gluten and then argue with their doctor to get a test -- that only catches a certain kind of gluten damage and then only once it is well-advanced -- have no other alternative.

I don't care if I have an official diagnosis of celiac or not. I just want to be healthy.

I like peer-reviewed research as much as anybody. But I'm not going to continue to be sick just to be a martyr to the cause.

Let me give you another example outside the realm of gluten. I have a balance disorder (I had to diagnosis it, but my doctor came to agree) that has no treatment in the standard literature. I read that a particular herb can help with balance problems generally. My doctor said "no, no, no, don't take that." I did anyway (after researching for any possible side effects or counterindications), and I eliminated my symptoms, which had been going on for two months, were driving me nuts, and could have proven permanent. Sometimes, you don't have the luxury of all the research you would like and you have to make a decision based on imperfect information. I see now that there is a lot more research on this herb now. Perhaps my doctor would be willing to prescribe it. I would have had years of suffering in the meantime.

Regular doctors do things all the time that are not supported by peer-reviewed literature, and some of it bears serious potential consequences. But if they are doing what most of their peers are doing and especially if it is something lucrative to the profession, they seem to get a free pass. If people test positive with Enterolab, go gluten-free and then don't get better, my guess is that they would just quit the diet. (I haven't heard of such folks, though.) There is no lasting damage or major expense involved. It isn't as if folks who get Enterolab testing are being kept from successful treatment of what ails them or are getting sick because they eliminate gluten.

The medical profession is not unified on this subject. I wish I had saved the link to a discussion I saw about this once. There are a number of schools of thought out there. Some others agree with Dr. Fine. See, e.g., https://www.celiac.com/articles/1101/1/Glut...ewey/Page1.html

There are those who require the "celiac genes," positive blood tests, and positive biopsies to diagnose celiac and don't recognize any other problem other than this. Then there are assorted schools inbetween. I do wonder if those in the stricter schools would change their minds if they were experiencing symptoms and the regular tests did not avail?

I guess I'm in the "positive response to the diet plus positive Enterolab tests are sufficient to justify eliminating gluten" camp.

OK, I guess I should get off my soapbox. :lol: If people like their doctors, can get useful information from the regular tests, and can get well, more power to them. It is just nice that there is an alternative out there when these things aren't all true, even if the alternative hasn't been peer-reviewed and replicated.

ShayBraMom Apprentice

Any new treatment, any new way of doing in the medical field is first deemed as uncredible. Many have had very good experiences here and I felt comfortalbe enough to give them a try! We are waiting on results for my daughter of Malnutrition tested through stool. They where very professional (enterolab) and very nice, answered many oft my many questions, prompt and good ( I could read up on them in the net since I got the answeres and knew what to look for), the Testkit came very fast once ordered, when the stoolsampletub was full I sealed it as aksed, freezed it one more time until it was time to go to UPS (or you can call them), put it in the seethrough envelope to seal it and put it back in the box it came. Took my sticker with me adn took it to UPS, she did the rest adn it was, done. The box is prepaid, so all you need to do is give it to UPS or take it there and it'll go there per 24 hour express!

We did test with Prometheus wich was covered by our Insdurance for the Celiac-Gene, the results where back fast all was good! My dd came back DQ2 and DQ8 and my son DQ2 pos.

I can not say a bad thing aobut Prometheus OR EnteroLab! I"d say, find out if your Insurance will cover them, if NOT go with EnteroLab it'll be better on your wallet and the results will be just as accurate!

Well, I guess I would call those doctors who won't or don't think to test for celiac (the average length of time to diagnosis in this country is 11 years), who just label folks as having

IBS or psychological issues, who tell folks with negative tests that they can't be celiac or gluten intolerant (overlooking false negatives and the complete gamut of possible problems), who run tests after a patient has been gluten-free (when such tests are useless), who still think celiac is rare or only has certain classic presentations, and the like are the true scam artists. I have read on this board of so many of them out there.

I don't believe that those on this board who have been told by doctors that they are fine but who then improve on a gluten-free diet -- and happen to have positive Enterolab tests -- are making it up.

Yes, it would be great if Dr. Fine would publish. He has fine credentials and has at least explained his work. In the meantime, those who don't have the "correct" celiac genes or who had positive responses to the diet and are unwilling to go back on gluten and then argue with their doctor to get a test -- that only catches a certain kind of gluten damage and then only once it is well-advanced -- have no other alternative.

I don't care if I have an official diagnosis of celiac or not. I just want to be healthy.

I like peer-reviewed research as much as anybody. But I'm not going to continue to be sick just to be a martyr to the cause.

Let me give you another example outside the realm of gluten. I have a balance disorder (I had to diagnosis it, but my doctor came to agree) that has no treatment in the standard literature. I read that a particular herb can help with balance problems generally. My doctor said "no, no, no, don't take that." I did anyway (after researching for any possible side effects or counterindications), and I eliminated my symptoms, which had been going on for two months, were driving me nuts, and could have proven permanent. Sometimes, you don't have the luxury of all the research you would like and you have to make a decision based on imperfect information. I see now that there is a lot more research on this herb now. Perhaps my doctor would be willing to prescribe it. I would have had years of suffering in the meantime.

Regular doctors do things all the time that are not supported by peer-reviewed literature, and some of it bears serious potential consequences. But if they are doing what most of their peers are doing and especially if it is something lucrative to the profession, they seem to get a free pass. If people test positive with Enterolab, go gluten-free and then don't get better, my guess is that they would just quit the diet. (I haven't heard of such folks, though.) There is no lasting damage or major expense involved. It isn't as if folks who get Enterolab testing are being kept from successful treatment of what ails them or are getting sick because they eliminate gluten.

The medical profession is not unified on this subject. I wish I had saved the link to a discussion I saw about this once. There are a number of schools of thought out there. Some others agree with Dr. Fine. See, e.g., <a href="https://www.celiac.com/articles/1101/1/Glut...ewey/Page1.html" target="external ugc nofollow">https://www.celiac.com/articles/1101/1/Glut...ewey/Page1.html</a>

There are those who require the "celiac genes," positive blood tests, and positive biopsies to diagnose celiac and don't recognize any other problem other than this. Then there are assorted schools inbetween. I do wonder if those in the stricter schools would change their minds if they were experiencing symptoms and the regular tests did not avail?

I guess I'm in the "positive response to the diet plus positive Enterolab tests are sufficient to justify eliminating gluten" camp.

OK, I guess I should get off my soapbox. :lol: If people like their doctors, can get useful information from the regular tests, and can get well, more power to them. It is just nice that there is an alternative out there when these things aren't all true, even if the alternative hasn't been peer-reviewed and replicated.

Nic Collaborator
Thanks for the info...I think I am going to try to go with Prometheus if I can get my insurance to cover

My son's gi sent his blood to Prometheus. I was also worried about insurance because Prometheus was not in my network. The doctor told me not to worry about it because he never had a patient complain about getting a bill from them (apparently they accept what ever the insurance happens to pay out, I believe it was 70% of what my insurance company felt was appropriate). I never got a bill from them and that was over 2 years ago.

Nicole

mama2two Enthusiast
Just wanted to see if anyone had any thoughts about testing....My friend who is a dietician recommends Promethius lab for testing. I asked her what she thought about Enterolab and she just said she was not familiar with it. I see that Prometheus is more expensive, but has anyone had any experience with one or the other being recommended? Any differences besides the cost? I am going to argue with my insurance company to cover the cost for our whole family.

www.prometheus-labs.com

Thanks for the input

My daughter was first tested through prometheus, by serum celiac panel, I did not choose them, we just had the lab work drawn and it was sent there. It cost us $700, we have insurance, it did not pay and i'm not sure why, her results came back as probable, it said that she required further testing, the pedi told us the results were inconclusive and that to run genetic tests like prometheus was suggesting would cost lots of money and may still not tell us anything, he suggested I put my daughter on the gluten free diet during the summer when I could control what she was eating and if her symptoms improved assume she needed to be on it. I put her on the diet and her symptoms greatly improved, at first if she had any gluten her symptoms would show up again a couple days later, I told this to her pedi and she said that she figures she has celiac disease, despite what tests show, just from her response to diet. We decided to test with enterolab, b/c my daughter did not like being on the diet, and we felt we needed some sort of proof that she did indeed need to be gluten-free, I guess we were just in denial. Enterolab was much cheaper and we discovered that both my husband and I have genes that predispose us to be celiac/gluten sensitive, one gave the celiac gene and one gave the gluten sensitive gene to her, now we are all gluten free and feeling pretty good physically, but my daughter is a wreck emotionally, she was so hoping that this test would have told us that she could be on a regular diet, but we are dealing with this and I know we will get through it.

  • 2 weeks later...
MammaW Newbie

So thanks for everyone's thoughts on the lab issue. I am still trying to get my insurance to pay for the testing....I have submitted a "medical necessity" letter in hopes that they will pay. My doctor had no real opinion re Enterolab, but actually uses Prometheus regularly. I think my plan will be to see what my insurance will pay for and go from there as it would be impossible to have testing done if we have to pay out of pocket. what a wild ride this has been. We have been gluten-free, then back on g, then gluten-free again. not sure what is really helping. i guess if i had seen a really amazing response to gluten-free, i may be more likely to forego the testing all together and just keep on the diet. but since i really am not seeing a wonderful response and it is so difficult for my 1 year old to eat anything at all especially gluten-free i guess it would be worth it to know if we have to keep up the fight or not. so i will keep everyone posted. I am goign to start a new thread and post this response as well because i think this thread has long worn out it's usefullness!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,857
    • Most Online (within 30 mins)
      7,748

    LowellFrancis
    Newest Member
    LowellFrancis
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Rogol72
      Some interesting articles regarding the use of Zinc Carnosine to help heal gastric ulcers, gastritis and intestinal permeability. I would consult a medical professional about it's use. https://www.nature.com/articles/ncpgasthep0778 https://www.rupahealth.com/post/clinical-applications-of-zinc-carnosine---evidence-review https://pmc.ncbi.nlm.nih.gov/articles/PMC7146259/ https://www.fallbrookmedicalcenter.com/zinc-l-carnosine-benefits-dosage-and-safety/
    • Jillian83
      He is. Which makes everything even more difficult. I’m not a believer in “staying for the kids” but I have nowhere to go and it’s not just me, it’s me plus my babies. We live in a beautiful place, lots of land in the country and me and the kids love the place we’ve called home for their entire lives. But Im seeing that he’ll never change, that my kids deserve a happy healthy Momma, and that staying in this as is will be the early death of me. Then I look at the scars covering my entire body…this disease and the chronic stress I’ve been enduring for years that tell me I’m no longer beautiful and no one will ever look at me with interest again. I try self care, try to give myself grace so I can just start loving myself enough to gain strength but the slightest sparkle in my eye and skip in my step attracts his wrath and it all comes crashing ten fold. Life is just absolutely railing me from every single direction leaving me wanting to wave that white flag bc I don’t feel like there’s much hope no matter what happens. 
    • trents
    • Jillian83
      Hi, I was recently diagnosed with Celiac and dermatitis herpetiformis after years of suffering without answers. I lost my mind. I lost my job. I lost so much time. I lost Me. Conventional doctors are opulent come near me and the one who did sat across the room, misdiagnosed me, pumped me full of steroids which collapsed my entire hip for 6 months. So without answers I began my holistic journey. Fast forward a couple of years and still struggling with a mysterious whole body itchy, crawling “skin hell”, perfect teeth now deteriorating, thick hair now thinning rapidly and no more than a day or 2 at most relief….An acquaintance opened up a functional medicine practice. Cash only, I found a way. Within a month tests clearly showing my off the charts gluten allergy/sensitivity as well as the depletion of vital nutrients due to leaky gut and intestinal damage. dermatitis herpetiformis was more than likely what I was experiencing with my skin. I was happy. I thought this is easy, eat healthy Whole Foods, follow the diet restrictions and I finally get to heal and feel confident and like myself again very soon! 😔 Supplements are very pricey but I got them and began my healing. Which leads to the other major issue: not working, stay at home Mom of young kids, entirely financially dependent on my man of 7 plus years. He’s never been supportive of anything I’ve ever done or been thru. He controls everything. I’m not given much money ever at a time and when he does leave money it’s only enough to possibly get gas. His excuse is that I’ll spend it on other things. So my “allowance” is inconsistent and has conditions. He withholds money from me as punishment for anything he wants. Since being diagnosed, he’s gained a new control tactic to use as punishment. He now is in control of when I get to eat. He asked for proof of my diagnosis and diet bc he said I made it up just to be able to eat expensive organic foods. Then after I sent him my file from my doctor he then said she wasn’t a real doctor. 😡. I go days upon days starving, sometimes breaking down and eating things I shouldn’t bc I’m so sick then I pay horribly while he gets annoyed and angry bc I’m not keeping up with all the duties I’m supposed to be doing. His abuse turns full on when I’m down and it’s in these desperate times when I need his support and care the most that I’m punished with silence, being starved, ignored, belittled. He will create more of a mess just bc I’m unable to get up and clean so that when I am better, I’m so overwhelmed with chores to catch up that the stress causes me to go right back into a flare from hell and the cycle repeats. I’m punished for being sick. I’m belittled for starving and asking for healthy clean water. I’m purposely left out of his life. He won’t even tell me he’s going to the grocery or to get dinner bc he doesn’t want me to ask him for anything. I have no one. I have nothing. Im not better. My supplements ran out and I desperately need Vitamin D3 and a methylated B complex at the very minimal just to function….he stares at me blankly…no, a slight smirk, no words. He’s happiest when im miserable and I am miserable.  this is so long and im condensing as much as I can but this situation is so complicated and disgusting. And it’s currently my life. The “IT” girl, the healthy, beautiful, perfect skin, perfect teeth, thick and curly locks for days, creative and talented IT girl….now I won’t even leave this house bc Im ashamed of what this has dont to my body, my skin. Im disgusted. The stress is keeping me from healing and I think he knows that and that’s why he continues to keep me in that state. He doesn’t want me confident or successful. He doesn’t want me healed and healthy bc then how would he put the blame of all his problems on me? This journey has been hell and I’ve been in Hell before. I’ve been killed by an ex, I’ve been raped, robbed, held hostage, abused beyond nightmares but the cruelty I’ve experienced from him bc of this disease is the coldest I’ve ever experienced. I’ve wanted to give up. Starving and in tears, desperate…I found a local food pantry in our small town so I reached out just saying I had Celiac and was on hard times. This woman is blessing me daily with prepared gluten free meals, donations, educational info, people who know this disease and how they manage life and the blessings just keep coming. But it’s overwhelming and I feel like I don’t deserve it at all. He just glared and I know he’s going to sabotage it somehow. I don’t even know what to do anymore. I’m so broken and just want peace and healing. 
    • cristiana
      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
×
×
  • 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.