Enterolab

[holiday16]

I don't have any specific information on the topic, but I have always had this question in my mind:

Has ANYBODY ever been found NEGATIVE for gluten intolerance in an Enterolab test?

I have only ever heard of positive test results from Dr Fine. If we believe that the incidence in the population is about two percent, there should be a lot of negative test results. Since only people with symptoms get themselves tested, I don't expect a 98% negative rate. But it should be substantial. I have never heard of somebody being tested by Enterolab who was NOT found to be intolerant to gluten. This causes me to doubt the validity of the test.

My own diagonosis was by positive biopsy showing celiac damage to the villi.

My mother had the test done through Enterolab and came back with a negative. Mine came back just barely positive, but the gluten free diet has given me my life back. I tested negative with blood work several years ago and talking w/ my Dr. I guess it's possible it was negative because I really wasn't eating that many bread/pasta things that most people tend to eat. Also explains why I would get horrible stomach pain at times, but never linked it to the days I was eating what for me would have been an unusual amount of bread etc.

So yes there are negative results, but I doubt those people are hanging around here. I would like to get my son and daughter tested at some point and it will be interesting to see what theirs are. My other daughter was diagnosed on symptoms alone because the stomach pains she had been complaining of for so long went away after we went gluten free around the house. I told the Dr. and he thought it was great detective work on our part, but we really just got lucky )

I must say my mother tested under protest because she didn't have symptoms so I doubt there are many people that test unless they suspect a problem with gluten already.

[mamabear]

So many good points here.....but I have my doubts. If he has enough proof to create a business...then he has everything to lose by publishing and nothing to gain. I heard him speak several months ago. It sounded good, but his material is several years in the making, and yet has not had it substantiated. I personally believe he's onto something, but I do not believe he has proven it conclusively and that it can be verified by other observers. He was not very definitive when I asked why he was having so much trouble being published. Would that I could believe!!

[jnclelland]

I don't have any specific information on the topic, but I have always had this question in my mind:

Has ANYBODY ever been found NEGATIVE for gluten intolerance in an Enterolab test?

I have only ever heard of positive test results from Dr Fine. If we believe that the incidence in the population is about two percent, there should be a lot of negative test results. Since only people with symptoms get themselves tested, I don't expect a 98% negative rate. But it should be substantial. I have never heard of somebody being tested by Enterolab who was NOT found to be intolerant to gluten. This causes me to doubt the validity of the test.

My own diagonosis was by positive biopsy showing celiac damage to the villi.

Yup - me! I hemmed and hawed and waited 8 months after going gluten-free (on the advice of my acupuncturist, so no other medical tests either) before I tested through Enterolab, and my test came back negative. But going gluten-free had immediate, dramatic, positive effects, so I KNOW that gluten is bad for me no matter what the tests say. My suspicion is that I got lucky and went gluten-free fairly early in the progression of the disease, and 8 months was long enough to clear my body of antibodies.

Jeanne

[Nantzie]

I think that Enterolab fills a need for a lot of people who have run out of options.

If you have biopsy-positive, or even blood positive celiac, all that it took for you to get an answer was those tests. Mind you, it probably took years or even decades. But you've got a solid, concrete answer.

But there are so many of us here who don't have any of that. If we stopped at the biopsy results, we'd still be sick with GI symptoms, or have mobility issues (it got to the point where I could barely walk because of nerve pain and I couldn't even take my kids out in my own backyard), or other gluten-related problems.

So many of us who don't fall into the classic celiac diagnosis box go through Enterolab just to see if it's possible that gluten may be an issue.

Yes the gluten-free diet really is the only way to know if you're reacting to gluten. But honestly, if you were anything like me, you had tried every pill and potion there was in existence. Most of which helped with most symptoms, but not all, or made everything go away, for a few months.

I just needed to know I was barking up the right tree and this wouldn't be yet another disappointment. I didn't want to talk myself into something just because I wanted it to be true because I wanted so badly to not be trapped in the body that I was in anymore. I didn't want my desperation to lead me down another bad trail. I was just too exhausted. I couldn't take it anymore.

All I did through Enterolab for myself was the gene test. After I got my test results, someone here told me that DQ1 had more of the neuro/mood/pain symptoms than classic celiac and that I might notice a lot of things go away if I went gluten-free. Truer words have never been spoken. And I thank God every single day for giving me my life back.

So if you have classic celiac, you've got your answer. You've got a blood or biopsy result in black and white. But the rest of us don't have that luxury. All we can do is play detective. Enterolab is just helps answer one piece of a very lonely, very dark, very scary puzzle.

Nancy

[Rachel--24]

I do not believe that Dr. Fine is running a scam...however, I do not believe that his methods will ever be widely accepted or considered diagnostic of anything.

Reason being...many conditions can lead to a leaky gut and a leaky gut will always lead to a gluten sensitivity. So yes, I believe that a great deal of people (especially those who are ill) are truely having an immune response to gluten....hence all the positive results coming out of Enterolab.

While the Gluten Intolerance certainly *can* be due to Celiac....I suspect in most Enterolab cases (especially those having no Celiac gene)...the antibodies are due to leaky gut...and the cause is NOT Celiac.

This is why Enterolab cannot diagnose Celiac...they can only identify that there is an immune response....but not the actual cause of that immune response. It could be Celiac....it could be something else.....just as those who are only IgG positive in blood could have Celiac...or NOT.

Those antibodies could be raised due to gluten intolerance which is caused by something other than Celiac. In this case...gluten is entering the bloodstream via leaky gut...and the immune system is responding....but Enterolab cant identify the cause of the leaky gut.

More often than not I see people feeling better after eliminating gluten but the symptoms do return and more foods need to be eliminated. This indicates leaky gut...anyone with LG will feel relief after removing gluten and giving the immune system a rest. This is why people with MANY different conditions or diseases can feel better eliminating gluten....it alleviates symptoms caused by the opiates and the immune systems attack against a foreign invader.

Because of the amount of illnesses that can lead to a leaky gut I wholeheartedly believe in Enterolabs results. However, I believe that if people take these results to mean that the actual cause of their unwellness is due to gluten alone (Celiac Disease).....they may end up very disappointed when symptoms fail to resolve.

In my opinion Enterolab is primarily identifying leaky gut syndrome...and in most cases gluten intolerance is a symptom of that....rather than a cause. I dont doubt that there are plenty of true Celiacs identified by Enerolabs testing but the proof is mainly in resolution of symptoms IMO...and unfortunately Enterolab results give many people a false hope and a false sense that they've been "diagnosed" with something....when in fact they have not.

For all these reasons...I do not feel that Enterolabs testing is worth the $$....except when looking into the genes. If you want to know if gluten is contributing to illness...you can simply eliminate it from your diet for free. If you want to know WHY you have a reaction to gluten...Enterolab cant give you that answer. Celiac is one possibility....but there are many others to consider.

[AndreaB]

Has ANYBODY ever been found NEGATIVE for gluten intolerance in an Enterolab test?

My husband tested negative although he has two celiac genes.

Love the picture of your cat.

[pedro]

Hi Kassandra sorry that you are not feeling well.

I did my lab testing with EnteroLabs, and I was so glad I did. Everything I read about them is very positive. Their recommendations are excellent.

One thing I still have, if I stop taking the vitamins I will be extremely tired and sleepy all the time. I was taking the multi-vitamin one a day (gluten-free) . I had to increase the dosage to one tab in the morning and one tab in the afternoon. I've discovered that this way I am not tired. I have energy that I never knew I had in me before.

You remind me when I was you age. People told me all the time what do you mean you are tired you are only 17, I was tired, sleepy cramps all over my body, and depressed all the time.

Give a chance to the diet, like everyone mentioned to you already check and double check everything you take and use. For my kids we even had to changed the wipes we use to clean them. When my doctor looked at the results he told me, the goldstandard is the biopsy, but if I am you with the dietary reponse is enough, I would not go thru a gluten challenge to find out the same thing that I already know.

I hope and pray that you feel better, and recovered your strength soon.

As my doctor told the gluten-free diet will change your way of life, but will change your life for the better.

Best regards to you.

[Nancym]

I don't have any specific information on the topic, but I have always had this question in my mind:

Has ANYBODY ever been found NEGATIVE for gluten intolerance in an Enterolab test?

I have only ever heard of positive test results from Dr Fine. If we believe that the incidence in the population is about two percent, there should be a lot of negative test results. Since only people with symptoms get themselves tested, I don't expect a 98% negative rate. But it should be substantial. I have never heard of somebody being tested by Enterolab who was NOT found to be intolerant to gluten. This causes me to doubt the validity of the test.

My own diagonosis was by positive biopsy showing celiac damage to the villi.

Just want to correct this. I heard Dr. Fine speak in San Diego to the local celiac group. Something like 1% test positive for celiac disease by the routine standard testing. Dr. Fine does not test for celiac disease, he tests for gluten sensitivity. He find it in a much higher rate than celiac disease. But he says most of those people also have symptoms and most also respond to the gluten-free diet. The number is pretty danged high, I'm trying to remember, I think it was 60%. I believe in his control group it was much lower, like 30%. So these are people that are thinking, "Boy, there's something wrong with me, perhaps I should get tested" versus people he got from a random sampling of shoppers at a mall (I think that's how he chose his control). The correlation of symptoms and fecal antibodies is also quite high.

I think of Celiac disease and gluten sensitivity as a sort of spectrum, like the various stages of cancer. Personally I'd rather get diagnosed at the early end of the spectrum rather than the latter end. Not everyone will go on to develop celiac disease, but then again, it seems like there's a large amount of suffering one can have with just gluten sensitivity.

He has an amazing lecture to hear if you ever get a chance.

[ENF]

My wife and I each had all of the Enterolab tests for the gluten, soy, egg, casein, fecal fat and yeast. We sent the samples in separately, about a month apart, so that they couldn't have been mixed up. All of the positives and negatives were the same for both of us, with numbers that were very close as well. One of the genes was also the same for us. I had classic Celiac symptoms, very bad, and she had none.

P.S. we're not related, lol.

[Rachel--24]

Dr. Fine does not test for celiac disease, he tests for gluten sensitivity. He find it in a much higher rate than celiac disease. But he says most of those people also have symptoms and most also respond to the gluten-free diet.

Respond to the diet as in "I feel a little better"...or respond to the diet as in "I am fully recovered from all symptoms"????

Does he have a percentage for this??

A person with Celiac should have resolution of symptoms once they are completely gluten-free and healed....unless of course they have other issues as well. From what I can tell about those who are identified as "non-celiac gluten sensitive" by Enterolab....the vast majority do not have a resolution of symptoms after removing gluten. There is generally not steady improvement in this group of people....which account for the majority of those tested by Dr. Fine.

Gluten sensitivity is far more common than Celiac and Dr. Fine is finding this to be true with his test...but are the results really useful if they arent getting to the underlying cause of illness?? If alot of conditions lead to gluten sensitivity....isnt Dr. Fine just capitalizing on that fact???

I think in most of these cases of gluten sensitivity there is damage to the intestinal tract...this can be caused by so many things and can also result in alot of things...including gluten sensitivity. Removing gluten will obviously bring some improvement in symptoms....but the damage can persist. The damage would only heal if it were caused by gluten to begin with...as in Celiac Disease.

With gluten sensitivity the damage will often not heal by a strict gluten-free diet alone...there will not be a complete resolution of symptoms if gluten is not the cause of the damage in the first place. Gluten would only be contributing to the imflammation so removing it would of course be wise and beneficial...but certainly not a "cure".

I would like to see results of a study showing how many biopsy/blood diagnosed Celiacs (not found to have other issues) had complete resolution of symptoms on the diet...versus those found to be gluten sensitive by Enterolab.

My guess is that just as Dr. Fine finds gluten sensitivity at a much higher rate than Celiac....you would also find a much higher rate of people not regaining their health (despite the diet) in this category.

I would guess more than 80% of gluten sensitive people would not get to the bottom of their problems after testing with Enterolab. I also think I'm being conservative when I say 80%.

It would be interesting to do a poll on this.

To me the bottom line with Enterolab is that in most cases Enterolab is not diagnosing or identifying a cause of disease or illness when the reults are positive. They are diagnosing a food intolerance which can be a symptom of other things going on in the body. Removing ANY food intolerance will bring on some relief from symptoms but if gluten were truelly the cause....improvement should be steady and not decline.

[Nantzie]

My improvement was immediate and has not declined. All my symptoms went away like somebody flipped a switch.

I had the initial dairy problems for a couple months, some soy issues that came and went within a few weeks. That's it.

Any problem that I have had I've been able to trace directly back to gluten, although sometimes with quite a bit of detective work.

As far as I'm concerned, for the last year and a half, the gluten-free diet has been a "cure".

Nancy

[Rachel--24]

My improvement was immediate and has not declined. All my symptoms went away like somebody flipped a switch.

As far as I'm concerned, for the last year and a half, the gluten-free diet has been a "cure".

Nancy

Nancy...I did not say everyone would still continue to have problems...I said the vast majority who test positive for gluten antibodies through Enterolab still continue to have problems despite the diet.

I always have you in mind as being an exception since you are the only one I'm aware of on this board who got well and does not carry a Celiac gene. There may be one or two others....but the vast majority do not experience this kind of improvement.

Just from posting on this board for 2 years I can see that most people continue to have symptoms...sometimes even worse after removing gluten.

[Matilda]

...

[Rachel--24]

This is not a mercury toxicity/Lyme disease/candida board and I think we risk giving new people bad advice by keep repeating the idea that there must be something else wrong.

Matilda,

Where in my posts did I mention Lyme or mercury???

What about Crohns? What about thyroid disease?? What about all these other diseases that come up on this board?? I think what I said was that alot of other conditions can lead to a gluten sensitivity.

I dont go around this board suggesting Lyme or mercury....I realize its a Celiac board...but if someone asks about thyroid disease...I will answer their questions. If someone asks about Lyme...I will answer their questions. We are here to help one another.

By the way.....since you are listing diseases in my signature...why did you leave out my thyroid disease?? Is that more of an "accepted" condition??

Sorry but we dont all get to pick and choose our illnesses.

The point is...people DO tend to have alot of unresolved issues after going gluten-free....just take a look at some of the very long lists in many of the signatures here.

I'm not saying that people should feel completely healed and recovered immediately after reomoving gluten...never once did I say that. It does take time to heal. During the healing process people should not get worse....people should not develop all sorts of new and worrisome problems. Healing means getting better...not worse.

What I think is misleading is when there are posters here with very serious....and worrisome symtpoms that are still persisting after 2-3 years of gluten free.....and people are not sugesting looking into other possibilities but simply telling these people that it takes time to heal. Common sense says that if you avoid gluten (which is the cause of symptoms in Celiac) then you should not get progressively worse or feel as if you are not getting anywhere on the diet.

Many of the people here are NOT diagnosed with Celiac and this topic is about the validity of Enterolabs testing. I am entitiled to my opinion and my opinion is that Enterolab is not diagnostic of anything. They can not diagnose Celiac and if Crohns, leaky gut, bacterial overgrowth or some other disease is at the root of the gluten senstivity....they cannot diagnose this either.

The original poster in this thread asked about Enterolab. Are we not allowed to express differing opinions here??

If I dont go around praising Dr. Fines work (which STILL hasnt been published or peer reviewed after all this time) then I am misleading people??? I'm not talking about people with a FIRM diagnosis of Celiac. I'm talking about people taking this one stool test and believeing that they've been diagnosed with a disease and will recover after eliminating gluten. THIS is what is misleading.

If Enterolab were truelly diagnostic then the recovery rates would match those firmly diagnosed with Celiac...and they DONT.

Like I said in my first post...I dont feel its a scam but to use these tests as a diagnosis can end up causing prolonged illness....especially when symptoms are getting worse and people are being told to just wait because it might take 5 years or more to get better.

I'm not sure why you brought up Lyme or mercury and I dont see how it relates to the topic???

[Rachel--24]

There was a paper on the main page here a little while ago that suggested that adults take about 2 years to get better. Children tend to get better quickly, but adults don't.

Also....you will never find a post from me thats ever said that I feel people should abandon the gluten-free diet if they are not recovering. In fact I always urge those who are not recovering to STAY on the diet and to look into other possibilities if they are still symptomatic.

So how is this misleading or bad advice??

I'm sorry but I dont agree that I'm being misleading. I only suggest looking into other possibilities when someone is clearly very ill after a very LONG time on the gluten-free diet. I'm not talking about 3 months on the diet...I'm talking about 1 year or more and a WORSENING of symptoms.

When a poster is expressing concern over a growing list of problems and no answers...DESPITE being 100% gluten-free for more than 1 year....I feel it would be irresponsible to simply tell them to double check their diet and leave it at that.

I think if someone sees any improvement going gluten-free, they may be on the right track. They can often see that's true by how they get worse again when they have gluten accidentally.

And I totally agree with this.....but they should not feel "glutened" every other day after having avoided it for over a year. Many people still feel sick and if gluten is not the culprit then obviously something else is...whether its another food or another disease entirely.

Is it acceptable to suggest looking into other food intolerance as the culprit but not other conditions???

Sorry but thats unrealistic.....some people are still sick because they havent totally removed gluten, some people are still sick because they have other intolerances which havent been identified and some people are still sick because they have another condition which hasnt been diagnosed.

To answer every post in the exact same way is not helpful.....each person is different and if someone has advice that might be helpful they have the right to share it.

On this thread I have every right to state my opinion on Enterolab...as many people want to hear all sides and this is a topic which gets repeated very often. People DO have concerns over the validity of Enterolab testing and I DO have the right to share my own experience.

You can see in my signature that I used Enterolab for a "diagnosis" and although I tested positive for everything and had very high malabsorption the cause of my illness was not gluten...although I am intolerant at this time. It was not the cause of my malabsorption either.

If I had not pursued other possible causes would you still be telling me that after 2 years gluten-free I should just "wait" for healing to come??

[VydorScope]

I think Rach has a lot of valid points. I think we need to be careful of coming to heavy down on any one side though. IMO..

If testing (Entrolab, Biopsy, etc) shows a problem with gluten of any kind, then first step is a gluten-free diet. If some one does not [slowly/quickly/whatever] start to get better, or gets somewhat better, but still has issues, then they need to STAY gluten-free and check other things. If they find another problem, and fix that, then they should/may/can do a gluten challenge to see if that "cured" their problem with gluten.

[AndreaB]

I also agree with Rachel and Vincent.

A lot of people stop looking for answers to health problems once they have a "I've got to be gluten free and everything will get better attitude". They should see some improvement on the diet. If they give up looking for answers when they are still not doing well, then that's not good either.

I have the book "Dangerous Grains" and it lists over 150 different conditions that will respond favorably to the gluten free diet. Doesn't mean gluten free is the total answer though, just part of the puzzle. We've got to be proactive with our health and be open minded enough to go through further testing if all our symptoms don't resolve on a gluten free diet. Having said that I realize some people (which I assume are primarily celiac diagnosed) have so much damage from a lifetime of illness that they may not be 100% again. Still doesn't hurt to do more testing to see if anything else if going on.

[jerseyangel]

Yep--very well stated, Andrea

[sixtytwo]

I also agree with Rachel, she gives interesting points...things I need to think about. There are times, that although I know I am eating gluten-free, I still feel like I have been slightly glutened. Now I am wondering about the leaky gut thing as I am 62 and this could have been building up over time. Maybe it is time to see if there are other things that don't agree with me in addition to gluten. I was tested through Enterolab and thought that was the answer.......gluten intolerant and I have a gene, did the full panel. Thanks, Rachel, for persisting with your point. Barbara

[lonewolf]

Nancy...I did not say everyone would still continue to have problems...I said the vast majority who test positive for gluten antibodies through Enterolab still continue to have problems despite the diet.

I always have you in mind as being an exception since you are the only one I'm aware of on this board who got well and does not carry a Celiac gene. There may be one or two others....but the vast majority do not experience this kind of improvement.

Just from posting on this board for 2 years I can see that most people continue to have symptoms...sometimes even worse after removing gluten.

I know I'm not Nancy and I'm not trying to argue here. (I always appreciate the thought and intelligence you put into your posts, Rachel.) I wasn't tested through Enterolab, so maybe I don't quite count for what you're trying to say, but I don't have either of the Celiac genes and I have gotten better from the gluten-free diet. I'm actually even able to eat small amounts of egg and dairy after being gluten-free for a long time. I had a blood ELISA panel done, which is similar to what Dr. Fine does with the stool test.

I do agree that part of what Enterolab picks up is people who are sensitive to gluten because of leaky gut. That makes it (gluten sensitivity) another symptom of their main problem, rather than the root of their illness. This might be why Dr. Fine is stalling in publishing. After meeting him in person I really don't think he's running any type of scam or is trying to mislead anyone.

[dlp252]

Yes, I agree too. I think it's another tool to use to get me closer to better health. I definitely do have an intolerance to casein and to gluten, but is that caused by something else? I really don't know for sure, but I'll probably always remain gluten free because it's just one less burden off my body (and I DO have a celiac gene).

I did see improvement after going gluten/casein free...some pretty impressive improvement and not too long after starting the diet, but not everything cleared up. I have since found out that there are many other things contributing to my situation. I am satisfied with the amount of time I gave it as a test too...waited over a year to pursue more testing.

[chrissy]

no one has mentioned, yet, the fact that enterolab does not test for total IgA serum levels. an IgA deficiency will make IgA based tests useless-----and as far as i know, enterolab's tests are all IgA based. also, saying someone has a "gluten sensitive" gene means nothing either, because according to enterolab, all but a VERY samll percentage of people will have gluten intolerant genes.

[moonlight]

Hi..

with the results of Enterolab, we started gluten free diet, it gave us the courage to quit consuming wheat, barley, oats, etc. It is kind of against to our general beliefs, we always thought that "bread is good for you" since we are from mediterranian region, it is hard for us to accept that wheat is bad!...but, now believe that gluten-free is actually good for health in the long run! If we did not have the test we would still be wondering because the doctors are not able to tell you until you get seriously sick, they have this need for "falsification."

[Nantzie]

I think the thing I'm trying to get at is that the benefits of testing through Enterolab should not be under-stated any more than they should be over-stated.

The Enterolab stool test tells you if your body is having a reaction to gluten. Just because there may be more than one possible reason for that reaction doesn't mean the test is any less useful.

I hate to see people, who are trying the diet just in case in helps, have no improvement after a month and don't know if the problem is that they're not doing the diet 100% yet, or if they're chasing another rainbow that will lead to even more disappointment.

I think spending $100 on the gluten stool test is well worth it. It can save someone even more money in the long run. Either by saving money on gluten-free foods, saving money by not having to throw/give away gluteny foods or personal care products, saving money on co-pays, saving money on medications and supplements, etc.

Enterolab can put something in their hands that can help them make a decision on whether they need to give it more time, or whether they should move on to other possibilities.

Nancy

[Rachel--24]

no one has mentioned, yet, the fact that enterolab does not test for total IgA serum levels. an IgA deficiency will make IgA based tests useless-----and as far as i know, enterolab's tests are all IgA based.

This is true. I dont think this point is ever made because the majority who test through Enterolab DO test positive.....unlike what is seen in the bloodtests. Some people may test negative through Enterolab for this reason but it seems that most people do get positive results.

also, saying someone has a "gluten sensitive" gene means nothing either, because according to enterolab, all but a VERY samll percentage of people will have gluten intolerant genes.

Another good point.

I dont put anything into my gluten sensitive genes...they dont mean anything to me with regards to my illness or to gluten. The gene test can be useful when trying to dertermine wether or not you carry Celiac genes...but the "sensitivity genes" are totally unrecognized.

I am glad I got the gene test...however, the rest of the testing I would probably do without if I were to do it all over again. I should say that there was a time when I truelly believed in Dr. Fines testing and very much thought that Enterolab was the answer to alot of peoples prayers....including my own.

I spoke very highly of Enterolab...but have since changed my views after much research.

I think the gluten-free diet will help a great many people who are ill. If I had known what I know now I would have just put myself on the diet and saved myself some money. At the time I was under the false impression that Enterolab testing was diagnostic.

People who are sick are generally looking for something to finally come back positive and identify the cause of all their pain. Its easy to get that from Enterolab.....its just that its not always getting to the root of the illness.