Is There Only One Lab For The Stool Test?

[the2ofus]

I am getting close to ordering my stool test from Enterolab but wanted to know if they are the only lab that does this. Does any one know of another? I understand they are the ones who developed this one sample test put if it works so well how come no other lab uses it. Why are the doctors so skeptical if it? It is an expensive test and I don't want to go to enterolab if there is another choice.

Any answers or advice would be greatly appreciated.

Thanks,

Robin

[Guest aramgard]

Robin, If you read the article in Celiac.com, there is another lab which is developing a test similar to Dr. Fines enterolab test, except it will be faster. This lab is in Finland. I haven't yet found another lab that does this kind of testing. However, since most of our doctors cannot even decide whether we have Celiac or not and most of our doctors are really willing to treat only the symptoms and not the problem, perhaps Dr. Fine is right. After all, I understand, he does have Celiac disease and that would make him more sympathetic to the problems of a Celiac. I was tested by a regular physician, but only because I requested the testing and at the time he did not believe I had Celiac. It only took them 50 years to find out I had Celiac and I had major damage. I believe Dr Fine is trying to diagnose early to prevent further damage in Celiac patients. I hope this helps. Shirley

[the2ofus]

Hi Shirley,

Thanks for your response. Dr. Fines test just sounds to good to be true. With what I have read about the blood and biopsy tests I don't want to do either one.

Have you heard of anyone getting results from the stool test that turned out to be inaccurate?

Thanks

Robin

[Guest jhmom]

Hi Robin,

I was tested through Enterolab after "suffering" for over a year! I visited numerous doctors only to be told I had IBS, but I knew my symptoms did not match IBS.

I have not heard anyone complain about the test being inaccurate, I have only heard good things. Did you know that Dr. Fine has Celiac too? I think he cares and that is why he does this. Also I have read several post from members who were tested through Enterolab and mentioned their results were negative which is the reason they do not post here anymore.

I hope we have been able to shed some light on this for you

[Terri-Anne]

I am with Robin on this. It does almost sound too good to be true. And like most people I've learned to be wary of things that sound too good to be true because they generally are.

I have decided to start saving money toward having my son tested. While our pediatrician currently believes Logan has a histamine type of wheat allergy rather than celiac disease, however we've noticed he has started reacting to oats, which in the beginning he did not seem to. We're left wondering whether he is infact reacting to the oats themselves or whether the oats are minimally contaminated by wheat. He also seems to react to something else which we haven't been able to pinpoint yet. We can't help but have that lingering question burning in our minds of whether we should be eliminating all gluten or just the wheat (and now the oats).

I just wonder how long the medical field typically takes to embrace a new procedure/test/etc. and worry that I may be saving toward funding some sort of medical scam which relies on ill people desperate for some concrete answers.

[Guest jhmom]

I can understand people being leery, I am not one of those that just jump at anything and everything, I research and check facts and yes rely on others with the same experience. The way I saw it was, I had been SUFFERING for so long and my docs could not do anything for me. I was poked and prodded at for over a year, I endured tests that were totally invasive and embarrassing and I finally had enough!!!

We put so much trust into docs that we meet face to face and they let us down everyday. They tell us we are nuts, that we are depressed, that we have IBS and a number of other things but we continue to see them!!!! So the way I see it when people are at their wits end, want answers, want to be relieved of the pain or their child

[Dwight Senne]

My first question would be, how would you know if the Enterolab test was accurate or not? Let's say you go to a gastroenterologist and he orders a blood test followed by endoscopic biopsies. They both come back negative for Celiac. Then you have the Enterolab test done and it comes back positive. Which one is accurate?

My second question would be has anyone ever had the Enterolab test done and it came back negative for both Celiac and gluten insensitivity? I realize someone with such a result may not be hanging out on this board, but I really question the validity of his results. It appears that everyone getting the Enterolab test is diagnosed with either Celiac or gluten sensitivity.

My third question is why won't Dr. Fine open his lab to outside researchers to evaluate his methods? That would certainly allay some of my concerns for the validity of his tests.

Personally, I was diagnosed with Celiac disease by a competent and thorough gastroenterologist. I realize those kinds of doctors are not on every street corner, but I think it is worth the effort to keep searching. My diagnosis was established positives on both the blood test and the biopsy test. I found neither test to be humiliating, uncomfortable, embarrassing, or difficult. In fact, I consider both tests to have been a breeze!

These are just my opinions, but darn it - I'm sticking with them!

[Guest jhmom]

Considering after I received a positive diagnosis from Enterolab I went gluten-free and could tell a difference within a few days, THAT is a test within itself!!

I know for a fact several people have had a negative diagnosis (on the old board) they posted their message about the test results and thanked everyone for their support and never posted again!

My GASTRO doc is a very good one too and even told me that a lot of times it takes "time" for a disease to show up, so not unless you have suffered for a VERY long period of time it "may" not show up in "some" people. I think it's great when people get a swift diagnosis but not all of us are that fortunate and we take the best route for ourselves!

Considering I did well to get to work in the morning without having to stop to go to the bathroom and doubling over pain, that the Gastric Emptying scan was a little uncomfortable, then drinking the barium for the upper GI was NASTY and made me VERY sick, then the prep for the colonscopy was not a cake walk, the endoscopy was not that bad then the CT scan drinking the barium again made very sick. Some people may not be as sick as I was and that is wonderful all I know is I struggled with each procedure with abdominal pain and discomfort in some way and Enterolab was not invasive at all and in "my" opinion very reliable!

[tarnalberry]

I'm also skeptical of Enterolab, dewey. While I understand why people choose to use them, and completely and totally agree that improvement on a gluten-free diet is the true answer to the matter, Dr. Fine's refusal to have his work peer-reviewed and share the results and methods with other doctor's causes suspision in my mind. He may be doing it to monopolize the market - as soon as other labs do the testing, there will be market pressure on his prices. He may simply not want to take the time to go through the process of doing full blown studies for peer-review. My training in the sciences, however, won't accept those as decent excuses.

I don't necessarily believe he's a quack due to this though. As someone else noted on the thread, European doctors have been publishing results about tests similar to his using fecal tests. So Dr. Fine may well be on to something, but his methods leave me concerned. And he does have a valid point that it takes quite a fair amount of damage for the antibodie to make it into the bloodstream in sufficient quantities to be detected, as well as the fact that there is not agreement on how much damage needs to be seen on a scope to diagnose celiac.

But for me, I'm going to wait a few years as the Europeans continue to do published studies on the fecal tests. My skepticism may be totally unwarranted, and I can't argue with anyone who decides to use his lab, but I'm waiting for peer-reviewed results before I go back on gluten to get retested.

[gf4life]

Dr. Fine's refusal to have his work peer-reviewed and share the results and methods with other doctor's causes suspision in my mind.

Hi Tiffany,

I was just curious, but did Dr. Fine actually say that he refused to have his work peer-reviewed? I researched the tests and Dr. Fine quite a bit before I would trust Enterolab and I never came acrossed any information about that. I know that many doctors have made comments against Dr. Fine, but my understanding is that they don't want to take the time to look into his tests and research.

Please point me to any additional info regarding this topic as I am interested in learning more about it.

Robin,

As for the cost of the tests they are less than half the cost of Prometheus labs top of the line Celiac panel of blood/gene test. Since my insurance won't pay for either, I chose Enterolab for my kids since it was cheaper and I had used them. And they do get negative results often, but the reality is that most people who use them are symptomatic, and they will get higher positive results if most of the people being tested are symptomatic, than if they just tested random sections of the population. Research like that does need to be done to validate the tests to the rest of the medical field, but you also need funding to be able to do research and I'm not sure whether Dr. Fine is actively pursuing funding or not. it usually take the medical community about 15-20 years to accept new testing procedures and as far as I know these tests have only been available for around 5 years.

God bless,

Mariann

[tarnalberry]

My statement came from a combination of two things:

One was a letter someone posted from Dr. Fine responding to the issue of not publishing any of his results. I'm afraid I don't remember exactly what he said, but it left me with the impression of an arrogant man who couldn't be bothered to talk to anyone who would have the audacity to ask a question about the validity of his methods.

Two is the fact that - in the scientific community - it is incumbent upon the person offering up a new theory or method to put this theory or method out into the scientific publications so that his or her work can be reviewed and reproduced independently. (I'm not talking about whether or not a common practicing GP or GI will accept his results or take the time to investigate his methods, I'm talking about not making his methods and data available to other medical researchers.)

It's primarily these two things that leave me with a bad taste in my mouth about EnteroLab. But I can't say that he's wrong, or that they give false results, or that people shouldn't use them. It just makes me skeptical. :-)

(An interesting thing to consider, to the best of my knowledge, the tTg test is relatively new and hasn't taken that long (certainly not 20 years) to become accepted as one of the better blood tests to use to dx the condition, so I'm not sure how true it is - right now - that it takes two decades to get new tests accepted. Perhaps to get them accepted by every doctor in the country....)

[the2ofus]

Hi Mariann

I completely understand about the insurance issue. My insurance did pay for the blood work for my daughter. I don't think the doctor ordered a full celiac screening. Without all the parts of the test what good is it. He checked her IGG and it was 122, normal is under 30. He also checked her IGA but I have no numbers just a negative. I'm going the end of the month to the doctor and I'm going to make sure he orders me the full screening.

Our insurance also said they would pay for the stool test if it was done through an in network lab. Good luck, non of the labs I called offer this test. If I go through Enterolab they will only pay the allowable amount. This is only about 25% of the cost. I am assuming since my insurance company is willing to pay for the stool test that they consider it a legitimate test.

Dr Fine is very approachable. I have emailed him several times with questions trying to get the insurance questions answered and questioning him on the validity of the test. He always answers me. At least the email gives me the impression that it is him and not the staff.

Not to change the subject but you have all been very helpful with your information I just wanted to ask. Do you get symptoms on a daily basis or do they come and go? My daughter has diarrhea and other symptoms a few times a week. I only have it one - three times a week. Minor things like heart burn, slight nausia and some gas are usually there daily.

Thanks for the help

Robin

[gf4life]

Hi Robin,

In regards to the symptoms, Yes, the diarrhea did come and go, often with constipation in between. I don't think I had had a normal stool in more than a decade.

My insurance paid for the blood tests, but through Quest labs all the kids came back inconclusive (psotive IgG, negative IgA). Their doctor wanted to run the tests through Promethius (who also do a gene test if the blood is negative) and that is what my insurance wouldn't pay for. I should check again if they will pay for even part of the Enterolab tests, since they said before they wouldn't pay for anything unless the doctor ordered it, and even then most things have to be pre-authorized...

God bless,

Mariann

[gf4life]

I'm afraid I don't remember exactly what he said, but it left me with the impression of an arrogant man who couldn't be bothered to talk to anyone who would have the audacity to ask a question about the validity of his methods.

Tiffany,

Sometimes written words can be decieving. I have unintentionally offended people by some e-mails I wrote to them. Unfortunately we cannot always accurately express the feelings behind written words and they can give the wrong impression. Especially frustration, and I get a sense of frustration coming from my e-mails from Dr. Fine. I do not know if Dr. Fine has tried and failed to get the medical community to back him, but it seems that he would be smart to have tried. I do not know all that has gone on in his many years of research, so I will not judge his methods.

I agree that it may not take 20 years for a test to make it as reliable, but certainly to be accepted by everyone it could take at least that long. There are some doctors that already believe the tests and order them for their patients, and research is leaning toward the stool tests internationally. So I do trust them, and I am glad to have had them available to us. But it is certainly a personal decision, and you have every right to have made the decision you made for yourself.

God bless,

Mariann

[nicolesmom]

Robin,

My daughter also came back high on the IgG and negative on the Iga. She is 11 and has 3-4 BMs/day. She misses an average of 2 days/month of school due to nausea, stomache aches and severe headaches. All other screening blood tests came back negative. I went ahead and had her tested at enterolab and she came back positive for both TTg and Gliadin, but no intestinal damge-yet. Her primary did refer us to a specialist, but he diagnosed her as having IBS or stress. Does your daughter get sick often? My daughter seems to be a magnet for strep and any ailment she does get seems to be worse and longer lasting than for other kids. I don't want to go gluten-free unless I have to, but she did improve when I tried it. Any ideas as to what else could cause the gliadin IgG to be elevated, if not a reaction to gluten-on some level?

[the2ofus]

Hi Nicoles Mom,

My daughter is always saying she doesn't feel well. As far as doctor visit sick, she has had strep a couple times this winter and is now taking antibiotics for a respitory infection. I don't know yet what else can cause the readings to be high. One of the pediatricians in the group finally seems to be listening to me and has offered to research celiac and the stool test. I'm going to give her a few days before I call and see what she found.

I appreciate all the input it really helps give me more questions to ask my doctors.

Does quest not do the gene test or was it just not ordered?

Thanks,

Robin

[gf4life]

Does quest not do the gene test or was it just not ordered?

Robin,

Quest labs does not do the gene test. It was ordered in the lab slip for Prometheus, but it wasn't done when the blood was sent to Quest.

Enterolab uses a genetics lab in Denver, CO called Laboratories at Bonfils. They are one of the top genetics labs in the country. They do blood and cheek swab testing.

Kimball labs also does blood and cheek swab testing for celiac disease now as well.

God bless,

Mariann

[Guest aramgard]

For years I was diagnosed as having anxiety or stress related rashes, then came the recurrent diarrhea and constipation--still stress related according to doctors. It took them 53 years to decide that I had Celiac disease and for years I have had recurrent strep infections, bacterial infections, ear infections, influenza. Every year I get sick with all of these and no one could ever figure out why my immune system was so bad. Now we know and it's too late for me, but if you have children who are demonstrating these symptoms, please give them a break for a healthy life and persue this diagnosis with a vengence. My intestinal tract seems to have healed, but my immune system has not and I get everything that comes my way. Don't allow your children to become me in the future, try to get an accurate diagnosis where ever you can. Shirley

[the2ofus]

Hi Nicole's Mom,

My doesn't get regular sick that often, she had strep twice this school year and now she has a congested cough that she's taking antibiotics for. She gets the diarrhea 2-6 days a week. She doesn't complain much anymore. I think she is naucious and has a bit of an upset stomach daily, I know I do. It has become so common place that unless I think about it I forget.

I don't know what else could cause the IGG to be elevated. I didn't get anywhere with her GI doctor. He said there is a 1% chance she has celiac disease. I don't agree with him yet. Lucky for us I ran all this by her pediatrician, and she is going to look into the enterolab test and order it for her if it sounds legitamate. I am going to go to the doctor on the 30th and hopefully he wont mind that I have already diagnosed myself but need him to fill out the paperwork for the labs.

It's very frustrating because I don't know if we should stay away from gluten or just assume it's only IBS.

Robin

[the2ofus]

Hi Nicole's Mom

sorry for the double answer, I'm very tired doing this research and didn't realize there was a second page to this post.

Mariann,

You said that enterolab sends out their test. Is this for the gene only or do they send out the whole celiac stool panel? If it is the whole panel then can we go directly to this other lab with the sample? I don't like to deal with a middle man when I can go right to the source. My daughters Pediatrician is will to order the test for us. I just need to wait until I go to the doctor and get my blood work back. I need to know if it is neg or pos before I go any farther. I am trying very hard to find something positive written about enterolab. All I have found have been regular people like us on the boards. None of the research I have done has been from any of the medical journals, articles etc.

Does anyone know of some postive proof of the validity of this test?

I'm starting to get confused and think in circles.

Thanks,

Robin

[nicolesmom]

Thanks for all the replies! As far as enterolab, they are accredited and their methods are valid. I think the main reason doctors don't accept the diagnosis is there is not enough data at this point to validate their "normal values" which are less than 10 units. As you all know, the blood serum reference ranges are usually less than 20. So while the methods are valid, there is still some question in the medical community about the interpretation of the results. I'm pretty sure my daughter has at the least a gluten sensitivity, and I for one agree with enterolab"s findings. I didn't have the gene testing done because my aunt definately has it and I'm pretty sure my mom and both sisters do to. They have refused testing.

Thanks again, after reading all the replies I will definately keep pursuing a daignosis. I may also check my son-age 9 who has been diagnosed with depression and has borderline ADD through enterolab. He also has mild tourette syndrome. Maybe a gluten-free diet would help him, too. Last year his celiac screen came back negative. We also use quest labs.

Trudi

[gf4life]

Robin,

Enterolab only sends out the genetic tests. They have to be done at a specialised genetics lab. They use the Laboratories at Bonfils in Denver, Colorado. I checked up on it and it is a very reputable genetics lab. Antother lab that also does a genetic screen for celiac disease is Kimball Labs. They do it by blood draw or cheek swab.

The stool tests are performed at Enterolab. As far as I know they are the only ones doing this test in the US.

God bless,

Mariann