Sanity Check: Validity Of Enterolab

[climbmtwhitney]

Hi.

I need a sanity check. I'm starting to wonder about Enterolab's validity.

Myself and ALL of my 3 kids were all diagnosed gluten intolerant (turns out 2 of us are actually Celiac). O.K. fine. But, then my husband tested gluten intolerant with NO symptoms. O.K., now that's weird. A coincidence? Then, my niece tested positive. Each one of us that ordered the test, tested positive. So, now I'm wondering if most people can test positive using his method. Or does my family just have super strong genes and I happened to marry another gluten intolerant person.

Does anyone know if there has been any recent literature supporting Dr. Fine? Has anyone's doctor been supportive of his methods? My gut says he's legit, especially since we've responded well to the diet (DH still a question since he just started.) But, I'm finding it harder to defend him to my sister (for my symptomatic niece) since every time we get a test back, no surprise, it's positive. Seems too coincidental. Or, then again, maybe ALL of my kids have it because I married another gluten intolerant and my dear niece wasn't too lucky. My sister is going to need some serious convincing, I'm afraid, because she is divorced and only has custody of her daughter 50% of the time. So, she would have to get her X on board too. Not easy.

On the bright side, at least now I don't have to feel like I'm "forcing" gluten-free foods on my DH. Ha! He can't play that card anymore!

Thanks much,

Sonya

[Mother of Jibril]

There is a strong genetic component to gluten intolerance/celiac disease.

Also... the book "Dangerous Grains" has some information about the prevalence of gluten intolerance. If I remember correctly, only 1 in 100 people is diagnosed with celiac disease (for a variety of reasons), but the number of people who are intolerant to gluten may be 1 in 3... even higher in certain populations (1 in 2 for people of northern European descent).

[ravenwoodglass]

The genes for celiac don't follow the same inheritence pattern that most genetic diseases do. It is also extremely common but doctors don't like to diagnose until we are in the end stage of the disease. Most folks don't realize the number of body systems that celiac impacts and if they are only looking at gut issues then folks might think those that find it before the gut system is severely impacted are not really being impacted by gluten. Your DH may be surprised at the changes he will see after he has been gluten-free for a bit.

[ShayFL]

I tested NEG with Enterolab the first time. About 2 - 3 years ago. But positive this last time right before I went gluten-free. So I can confirm that not everyone tests POS everytime.

[leadmeastray88]

Yes there are many people who have posted here that have tested negative on Enterolab.

I don't think you should be so surprised that your DH tested positive, I have two gluten sensitive genes so that means each of my parents carry the gene. Coincidence? No, it just so happens that they each carry the gene and married each other. I poke fun at them and say they're a recipe for disaster As of yet, neither of them have symptoms but could very well have gluten sensitivity. My mom is thinking about getting the Enterolab test to see, even if she doesn't have symptoms. So it's not impossible, thats for sure.

And who's to say your husband wouldn't have started showing symptoms maybe even a few years from now? Maybe you just caught it early, or he didn't have a 'trigger' to make him start showing symptoms? My trigger was surgery. I've had the genes all my life but they waited until 3 years ago to make their appearance.

Celiac is tricky. There's so much we don't know about it, and I don't question the validity of Enterolab testing, I see it as another research method that is continually gaining new data. It has supported many of the symptoms that people present and there are many here who test positive and respond well to the diet. Isn't that the most important thing?

I hope you're all on your way to better health

[lonewolf]

My son tested negative.

[Cinnamon]

So did mine. Yet gluten clearly affects him, so he's off it. I don't know if it's an IgG reaction or just some type of intolerance, or if it's celiac and he has an IgA deficiency. But yes, there are definitely negative results from enterolab. I'm pretty sure they're on the up and up.

[ShayFL]

And what would they gain by intentionally making everyone POS. They dont sell gluten-free products or supplements of any kind. IF they did, then I would be very skeptical. I think it is far more accurate than other food sensitivity testing like A.L.C.A.T. The fact that I was NEG and then years later POS shows that over time an intolerance can get worse. I had numbers back then, just not high enough to qualify for a POS. Those numbers went up over time.

[climbmtwhitney]

Hi everyone.

Thanks for chiming in. You are all right. I just wish the "traditional" doctors didn't raise an eyebrow when seeing the labs. It's definitely annoying, but in the end it doesn't matter. The diet is the ultimate proof.

Sonya

[Lisa]

We have had some "traditional" doctors on this site, who also had Celiac and none of them had must confidence in Enterolabs diagnostic/testing abilities.

[Mike M]

Hi.

I need a sanity check. I'm starting to wonder about Enterolab's validity.

Myself and ALL of my 3 kids were all diagnosed gluten intolerant (turns out 2 of us are actually Celiac). O.K. fine. But, then my husband tested gluten intolerant with NO symptoms. O.K., now that's weird. A coincidence? Then, my niece tested positive. Each one of us that ordered the test, tested positive. So, now I'm wondering if most people can test positive using his method. Or does my family just have super strong genes and I happened to marry another gluten intolerant person.

Does anyone know if there has been any recent literature supporting Dr. Fine? Has anyone's doctor been supportive of his methods? My gut says he's legit, especially since we've responded well to the diet (DH still a question since he just started.) But, I'm finding it harder to defend him to my sister (for my symptomatic niece) since every time we get a test back, no surprise, it's positive. Seems too coincidental. Or, then again, maybe ALL of my kids have it because I married another gluten intolerant and my dear niece wasn't too lucky. My sister is going to need some serious convincing, I'm afraid, because she is divorced and only has custody of her daughter 50% of the time. So, she would have to get her X on board too. Not easy.

On the bright side, at least now I don't have to feel like I'm "forcing" gluten-free foods on my DH. Ha! He can't play that card anymore!

Thanks much,

Sonya

I can sure tell you that Enterolab in my opinion is dead on with the test they perform. Their test is an antibody test.....If a person produces the antibody, it will show up, no fudging the test. I had this red itchy rash on both elbows for years, would ask the doctor about it and she would say, oh I think you might be allergic to yeast (she was close!) but she never did any testing. I never felt right for years but it would come and go in cycles maybe every 2 weeks or so. Then I had my appendix rupture and I didn't eat for a week because I was so sick. After the surgery, I never felt better in my life. The Doctor asked how I was feeling before letting me go home and I asked how long has my appendix been bad? He said what do you mean and I said everything is brighter and clearer than I have ever seen, even the colors of things just seem to jump out they are so clear! He said it may have been bad for a while but I don't know about years. Anyway, the brightness started to fade over the coming days as I got back to my normal diet. Then I really started to get sick and sicker and sicker. One day I google searched "red itchy rash on elbows" and low and behold I came across this web site and it talked about Dermatitis Herpetiformis. You could put my name in the symptoms. So I got tested by Enterolab and the test was positive. Wanted a second opinion and got the celiac blood panel done by my doctor, it was IGA postive (was a really high number) This is getting kind of windy here sorry, I had never even heard of gluten in my life, started the gluten free diet and I buy this book called the gluten free bible and started reading it. I'm about half way into this book and I told my wife, gee you sure have a lot of these symptoms (migraines, vertigo, loss of balance when walking ect. ect.) so she gets tested by Enterolab and long story short, she also has celiac and really bad at that! She and I seem to be doing good at the moment. Now this is not the end! So I let my Mother and both sisters know that this is genetic and they should be tested. My oldest sister has lots of health issues and is matter of fact a Registered Nurse and also works as a research nurse! She refused to be tested because she knew what the diet entailed. My Mother and Sister both tested positive (Mother has celiac, Sister gluten intolerant). But this isn't the end! (told you this was getting windy) So my Wife tells her Mother, Brother and Sister, Her Mother refused to be tested and has all kinds of issues including thyroid disease , Her Brother and Sister (she has Meniere 's disease) did get tested (her bother was in the middle of getting a complete physical at the time he was tested and his blood test came back at the same time, his doctor did not know he was being tested for celiac and asked him what he was eating because his blood work numbers showed he was malnourished. Both have Celiac are in denial and refuse to follow the diet. Her Sisters husband got tested and he has celiac He follows the diet because he says he has never felt better! (I am not making this up I promise) Their kids tested positive! Also, we all had gene testing done and all carry the genes! Is this not weird or what? Wonder if it is some kind of record? From what I have read, at least 50-60% of the US population is gluten intolerant and up to 30% of these have celiac. Anyway, I'm not usually this open with health issues but thought if it will help others what the heck! All the best! Mike

[Lisa]

I would like to clarify that Enterolabs DOES NOT DIAGNOSE CELIAC DISEASE. Enterolabs themselves state that.

They CAN test for sensitivities to certain foods and do some gene testing.

There are currently three ways to diagnose for Celiac Disease:

1. Serologic Panel (blood testing)

2. Endoscopy/biopsy exam

3. Positive dietary response

[Mike M]

I would like to clarify that Enterolabs DOES NOT DIAGNOSE CELIAC DISEASE. Enterolabs themselves state that.

They CAN test for sensitivities to certain foods and do some gene testing.

There are currently three ways to diagnose for Celiac Disease:

1. Serologic Panel (blood testing)

2. Endoscopy/biopsy exam

3. Positive dietary response

With all respect, you left out the fact that Enterolab tests for gluten intolerance and without a gluten intolerance, don't suppose there would be such a thing called celiac disease....Take care Mike

[Lisa]

With all respect, you left out the fact that Enterolab tests for gluten intolerance and without a gluten intolerance, don't suppose there would be such a thing called celiac disease....Take care Mike

Gluten intolerance does not mean Celiac Disease, with all due respect.

Celiac is an autoimmune reaction triggered by the protein found in wheat, barley, malt and rye. Gluten intolerance, is just that, an intolerance, that does not trigger an autoimmune reaction as Celiac Disease does. A gluten intolerance, may be a precursor to Celiac Disease, but they are not the same.

[ang1e0251]

I thought celiac could also be diagnosed through a positive DH biopsy. Am I wrong?

[ShayFL]

You are right ang!!

[sbj]

That Enterolabs website is pretty interesting. I found it to be somewhat misleading and not very clear. They seem to conflate gluten intolerance, wheat allergies, and celiac disease. These are three different conditions, they're not all the same thing. Celliac disease is an auto-immune disorder that can lead to intestinal lymphoma which is a particularly deadly form of cancer with a very low survival rate. I think it is somewhat dangerous to make people feel as if they might have celiac disease when they have something else.

Why do folks get this type of testing instead of the more accepted and typical celiac blood panel? Is it because they don't have insurance and the only way they can get a test is through Enterolab? I must say, the folks who run that website must be pretty darn happy that they get mentioned so often on this forum and have so many cheerleaders! And contrary to what someone else here said, they do have a vested interest in positive results. The more positive results the more people go to these forums and post about how Enterolabs possibly saved their lives.

Their website says, "The immune reaction to gluten is gluten sensitivity. Testing for the presence of an antibody produced against gluten is the diagnostic hallmark of gluten sensitivity." To me this is very misleading. The immune system reaction in celiac is to attack one's own body - the small intestine. The reaction when one is gluten intolerant is to attack the gluten. That's a big difference.

And check this out: "If you have the immune reaction, and especially if you have detectable malabsorption, symptoms, and/or immune disease, what is there to wait for to go gluten-free? And if you have none of these consequences, why wait for them to appear? Be thankful you do not, and go gluten-free."

Read that again - what is it saying? It's saying, if you have a reaction you should go gluten-free. It's also saying even if you don't have a reaction you should go gluten-free! I sincerely believe this site is trying to appeal to those amongst us who already feel they have ceiac disease or gluten intolerance. Maybe you do and maybe going gluten free will help you, so go for it. But at least check with a gastroenterologist. At least get the celiac blood panel. You deserve to know if you are putting yourself at risk of intestinal lymphoma. The celiac blood panel can also show if you are reacting to gluten.

Please read up about the differences between celiac disease and gluten intolerance. They ARE different, despite what some here might say and despite Enterolab's seeming efforts to conflate the two conditions. There are important ramifications for your health based on what you have. While the 'cure' is the same for each, the danger is different for those who make mistakes or cheat. If you have celiac disease you cannot afford to cheat or make mistakes - you could be killing yourself. Gluten intolerance is not typically going to lead to intestinal lymphoma if you make mistakes some of the time. Be careful.

[Lisa]

sbj - A good comprehensive post. Well done

[ShayFL]

they do have a vested interest in positive results. The more positive results the more people go to these forums and post about how Enterolabs possibly saved their lives.

The thing is I have never seen anyone in here say Enterolab saved their life. And everyone recommends a complete Celiac blood panel. We all do. Over and over again. Go to your doctor first, dont go gluten-free until you do so, ask for a complete Celiac panel and a biopsy if necessary. This is SOUND advice and we all give it.

***This thread was asking whether or not those of us who used Enterolab felt it was valid. We are responding to this.***

Enterolab has not saved any lives, but for many a gluten-free has. The sad truth is that a lot of people DID do a complete Celiac panel and it came up negative. Yet, they respond to the diet. So for some Enterolab is a way to reinforce their need for a gluten-free diet and keep them from cheating. It is concrete validation for their diet. Some order it because they tested POS on the Celiac panel and they just want more proof and to see if they tests results are consistent with their blood antibodies.

Some use it because they DO NOT want an official Celiac dx for insurance reasons or personal reasons.

Anyone can order a Celiac panel via blood all by themselves without ANY involvement from a doctor at all. You go to www.directlabs.com or www.healthcheckusa.com and you order them. No questions asked. They send a req. and you go to the lab of your choice. When the results come in, they email them to you. Simple as that.

Enterolab is just another tool. It doesnt dx anything. It is not a savior. But many of us feel it has validity. It confirms what we already know or gives courage for those that want to try gluten-free, but are afraid.

[sbj]

Thanks, Lisa.

My concern here is for newbies who don't quite know what is going on. I was recently diagnosed - purely by chance when my gastro was looking for something else. It wasn't immediately clear to me what I had and how I was to proceed. I wondered how I could have celiac disease when I don't have any symptoms whatsoever. I thought for sure my doc must be wrong because everyone on this forum is describing stuff that sin't happening tome at all.

Now I realize we are all different, and I also realize we are all just trying to help. I'm not here to bash Enterolabs, just to let people know they should definitely give the celioac blood panel a try. Better to rule celiac out than to wonder.

Many of these forums seem to have mostly gluten-intolerant people. And thats' fine even if the forums go by a different name. But those of us who have celiac have an auto-immune disease that is different than gluten intolerance. We have slightly different concerns (and we also have a lot in common). At first I couldn't figure out how to read the celiac blood panel test results. I didn't know what other tests I should have done. I didn't know how much cross contamination I had to avoid. I didn't know if I could eat Fritos even if they were produced in a factory that also processed wheat. I was told to watch out for crumbs on tables. It's difficult to get straight information.

I have no reason to think that Enterolabs has anything but their clients' health as a concern. BUT, their website is not very clear when it comes to the differences between celiac disease and gluten intolerance. The difference is important, especially if you have celiac. The man is a doctor and he should clearly describe the differences.

When you are first diagnosed I think it is very difficult to get good, accurate information. I don't know why anyone would want to skip out on the celiac blood panel - even if they want to also do the Enterolabs fecal test. I say go for both but definitely don't sell yourself short. Rule celiac out if you can.

[happygirl]

Shay, a clarification: For those who have been around this board for awhile (and there are MANY members who have been here longer than I have) - they will attest to the fact that many do feel that Enterolab is all that is needed. There are members that do not advocate the blood testing/biopsy and their advice is to do Enterolab testing.

The posts are archived, and new members/non-members do read them.

SBJ, I appreciated your thoughtful post.

[sbj]

Hi Shay - thanks for response.

***This thread was asking whether or not those of us who used Enterolab felt it was valid. We are responding to this.***

The poster also asked, "Does anyone know if there has been any recent literature supporting Dr. Fine? Has anyone's doctor been supportive of his methods?"

Well?

Who's denying that going gluten-free has helped people? I'm merely giving good advice - by your own admission - so why do you seem upset?

"for some Enterolab is a way to reinforce their need for a gluten-free diet and keep them from cheating. It is concrete validation for their diet. "

Do people here really need to spend almost $400 for 'validation'? Even though they already know their diet is working? Why not spend that $400 to help someone less fortunate?

"Some use it because they DO NOT want an official Celiac dx for insurance reasons or personal reasons. "

If that is their concern then why wouldn't they simply "order a Celiac panel via blood all by themselves without ANY involvement from a doctor at all."

It's important to note, as you do also, that Enterolabs DOESN'T DIAGNOSE ANYTHING. If you are concerned about your health, if you are suffering greatly with serious symptoms, you deserve a real diagnosis. Don't mess around with your health - go see a doctor.

The Enterolabs test could very well be valid but don't let it be a substitute - I agree with Shay in this regard.

Now I'll stop because I'm honestly not trying to get people like Shay upset - He offers good advice.

[jerseyangel]

Hi sbj, glad to have you aboard

I think that what you say about being diagnosed by traditional means is right on target. The problem is that up until very recently (and even continuing now in many cases) doctors didn't think to test for Celiac Disease. It was thought to be "rare"--thats what they were taught, so they didn't look for it.

I was ill for many years, and no one ever suggested Celiac or tested for it--even though I had many of the "classic" symptoms. Many people go through the same thing, and begin to search for why they are sick despite a clean bill of health or a vague "diagnosis" of IBS from their doctors.

They may then try the gluten free diet themselves. They feel better, their intestine begins to heal and their antibodies return to normal ranges. Unable or unwilling to undergo a gluten challange, they turn to Enterolab and are very comfortable with a "gluten intolerant" result. This, added to the positive dietary response, is often reason enough for them to remain gluten-free.

In a perfect world, people would be tested for Celiac Disease much sooner. Some Celiacs also test negative on the biopsy, due to the "patchy" nature of the damage in some cases.

It's wonderful that you were diagnosed so quickly--obviously your doctor is on the ball! Unfortunately, that's not the way it happens all too often

[Rachel--24]

The thing is I have never seen anyone in here say Enterolab saved their life. And everyone recommends a complete Celiac blood panel. We all do. Over and over again.

During my time on this board I've actually seen many posts in which the poster states that Enterolab has saved their life....or that they were undiagnosed before enterolab and the "diagnosis" saved their life, etc. I've also seen many posts that suggest traditional Celiac testing is not necessary (biopsy is invasive and bloodwork unreliable). Many posters say that Enterolab is the way to go if you want more "accurate" testing.

I strongly disagree. I think if you want to know whether or not you have Celiac Disease....then those tests should be ordered. Enterolab cannot diagnose Celiac Disease. In some cases the people who turn to Enterolab will truelly have Celiac Disease. However, I think that a great deal of people who use this method are only LED to believe that they either have Celiac....or that they will at some point develop it.....when in fact they may have some other condition entirely.

SBJ,

I agree with what you are saying....and the boards are full of gluten intolerant individuals who are under the impression that Enterolab gives them some sort of diagnosis. Its true that some people use it as a last resort.....because they feel they have no other option.

I do however see many people who are not at that "last resort" stage being recommended to Enterolab as a more reliable method of testing. In my opinion this is very misleading. Some people may lose their opportunity for Celiac testing if they interpret Enterolab's results as a diagnosis and then start the diet.....only to find out later that they are not completely well.

I have no reason to think that Enterolabs has anything but their clients' health as a concern. BUT, their website is not very clear when it comes to the differences between celiac disease and gluten intolerance. The difference is important, especially if you have celiac. The man is a doctor and he should clearly describe the differences.

When you are first diagnosed I think it is very difficult to get good, accurate information. I don't know why anyone would want to skip out on the celiac blood panel - even if they want to also do the Enterolabs fecal test. I say go for both but definitely don't sell yourself short. Rule celiac out if you can.

I agree that its better to rule Celiac out then to wonder later on down the road.

I tested positive with Enterolab but it didnt give me any real indication as to why I was sick. I was sick before I used them....and I was sick after I used them. It didnt diagnose me with anything.....just let me know that I was sensitive to gluten. When I was new to the board I was under the impression that a positive test meant much more than it actually does.

I think that much of the info. on Dr. Fine's website is very misleading. I admit that its been a few years since I've looked at it...and some of the info. may have changed.....but I do not recall that he made any attempt to clarify the differences between sensitivity and Celiac Disease. He also did not mention that gluten sensitivity can be brought on by OTHER conditions.

As a result many people feel that Celiac and gluten sensitivity are the same thing.....yet they are not...they are two different things entirely.

[sbj]

I can totally see where both Patti and Rachel are coming from. Thanks for the feedback.

Rachel, I found your post to be very powerful. I think it provides much food for thought for those still looking for a diagnosis.

Patti: it's a terrible thing if one can't get their doctor to believe them. I would advise people to simply directly ask their doctor for the celiac blood panel. My understanding is that it is covered by most insurance and since the disease is so prevalent more and more doctors are becoming aware. I told my brother about my test results and he already has found out that he does not have celiac disease. It took less than four weeks and he did not even have to twist his doctor's arm at all.

One thing I'm sure we all agree on: Here's hoping that everyone gets the diagnosis and/or help they need.