What Are The Downsides Of Enterolab?

[minivanmama0300]

I am just wondering if anyone has any thoughts/facts. I have the Enterolab kit here, waiting for dd's stool sample. All I have found in my searches are positive things, mainly coming from enterolab themselves. So far they seem legit and everything, but my question is, if this way of testing is more accurate, why isn't the medical community using it? I have read that Drs won't accept results from Enterolab. For our case I felt like it was worth it to go this route, I was getting too much run around from the DRs.

If my dd's tests come back positive from Enterolab, what can I expect from my dr? any other advice?

Jess

[bmorrow]

Jess,

I had the EnteroLab tests, as well as blood tests and a biopsy. EnteroLab was positive but my blood tests were negative and the biopsy was considered inconclusive. My GI doctor accepted the results, because he felt that with all of the symptons that I had and my improvement on a gluten-free diet that it was enough proof for him. After eleven months on the diet, I was still having severe diarreha, so he referred me to another GI doctor at Baylor Medical Center in Dallas, to get his opinion on the Celiac.

The doctor at Baylor discovered that I also had microscopic colitis, but the really interesting thing was that this doctor had also been a researcher with Dr. Fine. He told me that he believed the stool tests to be accurate and that one day this method would be accepted by the medical community. He went into alot of detail, but after talking to him, all of my doubts were gone. I now had two well respected doctors that believed the stool tests were reliable.

I hope this helps you to feel more comfortable about EnteroLab. I know that when I went to Dallas that I was hoping that I wouldn't get the diagnosis of Celiac, and that it was all an error, but a least I now know what is wrong with me.

[minivanmama0300]

Wow, thanks! That makes me feel better.

I guess it seems like the medical community in general is so behind the times in detecting celiac and related issues. I am really surprised to read that most people "diagnose" themselves and bring it to their Dr, not the other way around. I hope that you are getting some relief from the colitis, I don't know anything about it but it sounds pretty bad.

Jess

[Guest barbara3675]

Thank you Beverly....It is really important that you let everyone know when there is positive comments about Dr. Fine and Enterolab from the medical community. I hope that the stool tests become the norm someday also. I am satisfied with the complete panel that I had including gene testing. Had my DDIL not suggested my getting tested, I would still be having problems. I did start with blood work with my internist which was negitive, however, through this message board I learned about Enterolab. It is going to be interesting, over time, to see how Dr. Fine comes to be respected by the general medical community, I hope it is very soon.

Barbara

[gf4life]

Jess, We had the Enterolab tests done on myself and my three kids and they were all positive. (see my signature for more details)

We see a lot of doctors as a family and I have only had the Enterolab results refused by my GI specialist. Our two doctors in our GP's office, our ENT, my son's pedi Neuroligist, and his pedi immunologist/rheumotologist have all accepted the results. Our children's pedi GI has not 100% accepted them, but hasn't discounted them either. He is keeping an open mind, supporting them being on the diet and monitoring their progress. So 5 1/2 out of 7 doctors in my personal experience is not bad!

It takes time for new tests to be accepted in the mainstream, and Dr. Fine jumped ahead of the normal process, so that we consumers could have access to the test earlier. It takes up to 20 years for a test to get on the market, and he wanted to be able to help people sooner. Italian researchers have now developed a similar stool test and one day it might become more common to test for celiac disease with the stool test, rather than blood first. It is certainly more sensitive at picking up the early stages of gluten intolerance, before it becomes full blown celiac disease.

God bless,

Mariann

[cdford]

Anybody else noticed that GIs can be almost snobbish about this if your biopsy comes back negative but everything else is positive? I had a couple of my docs just roll their eyes when the GI did not want to accept anything other than a positive biopsy as evidence. My first GI did not even test me when he saw the blood work and the positive dietary response. This new one is driving me a little nuts, but the insurance is an issue with who I can see.

[minivanmama0300]

Do you think that it has anything to do with the fact that for it to be truly called Celiac there has to be damage, and they have to see it? From my reading it seems like it is just "gluten sensitivity" until the gene is activated and damage starts. That is what concerns me, I don't WANT to wait until a lot of damage is done, just to get a label I guess. I think if you have the gene and antibodies, and SYMPOTOMS especially, why not go gluten free and avoid worse!! I guess maybe it is easy for the GI to say no you don't have it if their gold standard is a positive biopsy. But I think that is silly.

Jess

[KaitiUSA]

Some GI doctors are snobby about having positive biopsies being the only way to diagnose. I fortunately had an awesome GI doctor and he told me he didn't need a biopsy to diagnose me. He told me that there was a good chance I had very little or no damage so it was a hit or miss whether it would come back positive or not. I think that biopsies can be useful but I don't think that is the ony way to determine celiac. I think blood tests are a good bet and I think that Enterolabs are on the right track even though some of the medical community looks down on them. If you have the gene, positive bloodwork, and symptoms that should be more then enough to convince doctors. If you on top of that have a positive Enterolab I would be saying HELLO?!? to the doctors who try to tell you that you don't have it.

[VegasCeliacBuckeye]

I was diagnosed via a biopsy sample from one of my DH blisters.

Some doctors believe in one way and some believe in several ways to diagnose.

[gf4life]

I would have loved to have gotten a biopsy of my DH blisters. Before my gluten challenge I only had them on my scalp. I would scratch them open before I realised what I was doing, so it was hard to get a referral to a dermatologist for that...

During my gluten challenge I increased my normal amount of gluten intake and I got the rash all over my hands and arms. Unfortunately I couldn't stay on gluten long enough to get the referral processed, and as soon as I had my intestinal biopsy I was gluten-free. There was no way I could stay on gluten for a few more months, just to try for a more solid diagnosis. Oh well. I feel pretty much how most of you feel. I don't need more than the Enterolab diagnosis, just to tell me what I already know. My body doesn't tolerate gluten. And there may come a day when the Enterolab diagnosis will be widely accepted, and then we'll all be set!

God bless,

Mariann

[kvogt]

I think GI docs are particularly obstinate because there's no money in celiac disease. They make all their money with the scope. If a lab test tell all that's needed, they'll go bust. And there's currently no drug company product to incent their liberal use of their prescription pad and subsequent rewards for that behavior.

[gf4life]

I agree 100%!

[maemai]

I was very pleased with enterolab. My mom first tested and the results showed she had gluten sensitivity, but not malabsorption. I tested and it showed gluten sensitivity and malabsorption. I mailed the results to my doctor along with an article about Dr. Fine. When I went to see my doctor, he was very supportive. He ordered the blood work and that came back positive as well.

Martha Ann

[tarnalberry]

I'm skeptical of Enterolab because Dr. Fine has - in the past - not played the open and honest researcher role in publishing his work. He had a good reason, I suppose, in that he makes a lot of money from his business, and a good business person doesn't give away his/her secrets. I'm trained as a scientist, though, so I think - particularly in medicine - there's a responsibility on the part of the scientist to share the information and make it public through the standard processes that allow information to be shared, examined, and tested by the rest of the community. (Note, that's me sharing my bias, not trying to say I think he's a bad guy, just that I'm biased in this situation.)

On the other hand, Dr. Fine is, apparently, starting to work on that avenue. I've heard he plans to publish sometimes soon, and that will go a long way to improve his credibility in the medical community, I think. Additionally, there is independent research that appears to be pointing towards validating his methods. He may be turning the tide in the troubles of dealing with people with a mindset like mine. ;-)

Basically, I think most doctors are discounting the methodology because of the presentation of it. I have a feeling this will change over the years, however.

[cindyann50]

I'm a newcomer, my 21 year old has celiac disease, blood and biopsy proven, 1/2005 after many years of tests, doctor visits, gut aches. I have a skin condition, biopsied in '98 and '02 - a "dermal hypersensitivity to an unknown". Skin allergy testing in '98 showed allergic to all inhalants, nearly all foods. Just rec'd my gene test results from Enterolab. I have DQ1, subtype 6 and DQ2. I went gluten-free when Megan rec'd her biopsy results 1/8/05; my skin is clearing slowly and she feels great. I had bloodwork for celiac disease in 2000 and it was negative. I plan to stay gluten-free and am encourage my other daughters to test. I also have Bell's Palsy (since age 2), Graves Disease ('97) and was diagnosed glucose intolerant 7/04. Definitely have a predisposition to autoimmune conditions. Am enjoying reading all the older posts here and am realizing what our medical profession is up against. I feel the doctors want blood/biopsy proven celiac for clout in requesting funding for further testing/screening; it just doesn't always work for a correct diagnosis and we patients have to try other means of helping ourselves and our families.

Cindy

[Guest BellyTimber]

This is one awesome thread!

I feel better able to understand how the establishment ticks.

Too bad that for some of us the labelling has impact on our insurance, or medical certificate for employers.

[mle-ii]

Hi new here. I'll start with saying that I have never been diagnosed with celiac disease, but then I have thoughts as to why. But I do have Microscopic Colitis (Lymphocytic) and have gluten intollerance.

I found out I was gluten intollerant pretty much by accident, started a diet (Atkins) and noticed that my GI problems started going away. Later after being diagnosed with MC I decided to send off to get tested at Enterolab. Tests came back positive for both the celiac disease and Gluten Intollerance gene. I also came back positive for the antibody test for gluten. But came back negative, for the rest of the tests.

I put faith in these test, especially having learned more about how the tests and the body works.

Thanks,

Mike

PS. I hope it's ok that I still post here as this is a great resource for being gluten free and I think that celiac disease and MC seem to have a lot in common.

[skbird]

Hi Mike -

Welcome! I also figured out my gluten intolerance by going low carb. I was so happy until I found low carb bread (what is that stuff, like 99% gluten???)

I have the microscopic colitis gene but don't believe I have MC, thankfully! But I have read about it and how much it benefits from a gluten-free diet.

Not everyone here is Celiac - I am non-celiac gluten intolerant. And many are not formally diagnosed, we just know gluten doesn't work for us.

Anyway, nice to meet you!

Stephanie

[louiesgirl2]

How are you all paying for their services? I found them to be extremely expensive. I cannot afford this. I almost fell over when I saw their prices. Even if I submit the bill to my insurance company, they won't cover it.

[egardner]

I know, my insurance wouldn't cover Enterolab either. I was lucky that my blood tests were pretty conclusive and my insurance did cover that bill, all 500 bucks of it! Geez louise, like we don't get it tough enough with needing expernsive food! Let's start a revolution

[skbird]

My insurance may have covered some of it but I have a weird plan - only get the first $500 a year covered, then I'm on the hook until $3,500 so I didn't bother. But I did use some of my cafeteria plan funds (from work) to pay for it, and that was ok.

Stephanie