Entrolab ?

[confused]

I have heard many of you talk about getting diagnosed threw entrolab. I went to their site, but im not sure what test i should do.

I was negative when i did the celiac test threw the dr office, but my IgG was high.

My symptoms are

bad constipation

never wanting to eat

mouth sore

joint pain

nosebleeds off and on

So i was just wondering which test i should do. I was looking at the big one for 399, but i also see the mouth swab for celiac. But would that be a waste since the blood test came back negative.

I would appreciate any help with this, i plan on ordering tommorow.

Also did your insurance reimburse you for any of it.

dan

[happygirl]

If your IgG was high, it is indicative of a problem with gluten, regardless of if its Celiac or not. Many have only been positive on "one" test and most do better on the gluten free diet. I wouldn't be quite so sure to throw that test out the window. By the way, did you have the full Celiac panel done at your doctor's office, that includes the tTG and EMA?

the mouth swab is for gene testing, which you can also have done through your doctor (they use Prometheus labs, often----not the lab Enterolab uses). It is checking for the presence of HLA DQ2 and HLA DQ8. But, just having the genes doesn't mean you have Celiac (about 30 percent of the US population has the gene(s), but only about 1 percent has Celiac).

Enterolab does not diagnose ANYONE with Celiac, it can only identify a gluten intolerance. Now, that gluten intolerance could be Celiac.

Also, you could test fully negative on the traditional bloodwork, and still be a Celiac.

Given that you DID have a positive indicator that gluten is a problem, I would recommend trying the diet.

[chrissy]

if it was your AGA IgA that was high it does not necessarily indicate celiac disease because AGA antibodies can be raised in other conditions. i can almost guarantee you that enterolab is going to diagnose you as being gluten intolerant----there are very few people that they say are negative----seems a bit fishy to some of us.

[e&j0304]

I would seriously consider getting a copy of your bloodwork to make sure that they ran the right tests and gave you the correct information about your results. Then if they are negative I would try a gluten free diet and see if it helps. You could very well be gluten intolerant without having celiac disease. Enterolab isn't going to tell you anything that a trial of the diet can't for much cheaper. Sorry if I come across as bitter, but I really regret spending all the money I did on Enterolab. They cannot diagnose celiac as the previous poster mentioned. You can diagnose yourself with a gluten intolerance without wasting your money.

Dr. Fine really need to publish his research or he's going to lose LOTS more credibility in many people's eyes...

[Rachel--24]

You can diagnose yourself with a gluten intolerance without wasting your money.

Dr. Fine really need to publish his research or he's going to lose LOTS more credibility in many people's eyes...

I couldnt agree more.

Dan,

Enterolab cant diagnose Celiac. Its only going to tell you that you're intolerant to gluten (its pretty much a guarantee) ...you already know this much from your bloodwork. I wouldnt spend the money to find out what you already know.

If you're looking to find out if you've got Celiac.....Enterolab cant answer that question for you.

I would just try the diet and see if there is improvement with the symptoms.

[larry mac]

.....I was negative when i did the celiac test threw the dr office, but my IgG was high.

My symptoms are

bad constipation

never wanting to eat

mouth sore

joint pain

nosebleeds off and on.....

dan,

Are you referring to a gastroenterologist? What does he think? How long have you had these symptoms? Any weight loss? I'm pretty new myself, and certainly don't know as much as most of these folks, but some of your symptoms don't sound like the classic ones (although they say there could be hundreds). Why do you think you might have celiac?

best regards, lm

[celiacgirls]

I have done lots of testing with Enterolab. While I agree that you can determine a lot of what you find out from them by a diet trial, I don't think I wasted my money. I would never have eliminated gluten myself without a positive result from them because I never suspected I had a problem with gluten. It turns out my depression, anxiety, and irritability were from gluten. Many other problems I had went away when I eliminated gluten.

It will be interesting when he publishes but whether his research is solid or he was just lucky, for us, he got it right. One of my daughters was told for 7 years that gluten wasn't causing her tummy aches as a result of the regular testing.

If you want to do the Enterolab testing, I would start with just the gluten anitbody test. If you decide to do other testing later, they keep your sample and you can add on without the S & H costs. I didn't submit it to my insurance because I like the idea of it not being on my records. I also figured by the time the insurance figured their "reasonable and customary" amount and discounted it for out of network, it wouldn't be that much.

[confused]

Thank you all for your help. I am going to go pick up all the blood work test they have done and look at them. I do have the test when they just did the IgA and IgG and that shows the IgG three times the normal amount. But they just called me about the ttG )im pretty sure that is what it was called). and they said that was normal and that in the one the GI dr would be interested in. I did have an appt this wedenesday but they cancelled it due to the dr had an death in the immediate family and they do not know when they will reschedule. So needless to say i am frustrated.

Just an randon question, ,Has anyone ever got a whole negative test from entrolab, or do they all come back high in some areas?

dan

[par18]

Reading about the pros and cons of getting tested by labs reminds me of a seminar I attended last summer given by Dr. Fasano from the University of Maryland. One of the things he mentioned was the reason why gluten was discovered to be the culprit. It was for lack of a better phrase "dumb luck". According to Dr. Fasano the mortality rate for Celiac in parts of Europe before WWII was 40% and after the war it was 40% and during the war it was zero!!! Turns out there were grain shortages and when people could no longer get the offending agent they immediately got better. It was not science but merely process of elimination which is "exactly" what a positive diet response could accomplish. What I am saying is that people have known for over 60 years now what the cause and treatment is for this condition. The problem is that a lot of us have grown up believing that only a doctor can diagnose and treat us for just about everything. Many refuse to believe or accept the fact that this could be our problem and that a diet change is all that is necessary. I know that these "labs" will take every opportunity to test us as often as we want before finally "suggesting" the diet. Why they do this makes perfect sense because regardless of what the results of the test are if the person does not get better they could always reccommend the diet as a "last resort" as opposed to a "first option". There is a tremendous amount of money to made from those people suffering symptoms of Celiac before the gluten free diet is attempted. IMHO the most desired result a testing faciltity can get from a patient is not positive or negative but rather "inconclusive" which could result in "further" testing and more money spent. Sometimes lack of funds is actually beneficial in this situation as it forces people to the diet sooner and if Celiac is their problem they recover faster. If it turns out that Celiac is not their problem (negative diet response) then they could spend "that" money on testing for something else.

Tom

[celiacgirls]

deleted - double post.

[larry mac]

..... I would never have eliminated gluten myself without a positive result from them because I never suspected I had a problem with gluten.....

karen,

That's interesting. Sounds like you went there to get tested for something else, is that right? And they discovered you have celiac disease?

best regards, lm

[Willow5]

hey, I see persons skeptical about enterolab diagnosis... My husband and I just got back negitive result! We both have one main celiac gene but our antibodies were in the high normal range! (Before I tried enterolab I had blood tests done and was high in IgG only). Our son who has had the worst GI troubles of us also got tested and he did come back positive on the low end. He also ended up having two main celiac genes 2,8.

I am glad to have done the complete panel, am still wondering though how my husband and I are officially negetive at AGA IgA being an 8 while my son is now positive with a number only two higher! Still, the testing came out very close to our blood tests.

[larry mac]

hey, I see persons skeptical about enterolab diagnosis...

Please someone correct me if I'm way off. I'm new, I never heard of gluten, celiac or Enterolabs till 2 months ago, and all I know is what little I've seen here and one Gastroenterologist (not even mine) opinion. Let me just put what I think I know down and then you or others can let me know if it's right or not. I'm just trying to be straight about it 'cause honestly, I really would like to know what the facts are myself.

I think it's only natural to be skeptical of something as unorthodox as this type of testing. This is not just "a lab", as in "let's see, which lab are we going to use for our tests". This lab is the only place that offers these tests (is that right?). And this testing is completely different from any established, accepted medical tests? Because this test was developed by one doctor, a Dr. Fine who also owns the lab? I don't know anything about him, anyone?

And from perusing this forum for hours every day for two months, it seems as if the members that have these test results in their signature also are intolerant to a lot of other stuff. Is this just a coincidence? Heck, I'm personally afraid to get tested there as I don't want to get intolerant to dairy, soy, corn or whatever.

The gastro dr. said no other labs have been able to confirm his test results, and that is why he is suspect.

That's it. best regards, lm

[Rachel--24]

The gastro dr. said no other labs have been able to confirm his test results, and that is why he is suspect.

Yup...thats about it.

In my time on this board I've seen many people go to Enterolab for answers (including myself). The vast majority of people tested come back positive. Initially I was OVERJOYED and very much sang the praises of Dr. Fine and Enterolab. This can be seen in my earlier posts.

Since then my views have changed...in part because I've gained more knowledge with time...also from reading the posts of others and their experiences with Enterolab.

The conclusion I come to is that many of us have leaky gut and this is the cause of gluten intolerance. When there is leaky gut....there are also anti-gliadin antibodies. This is with or without Celiac genes.

I really dont see too many people make a full recovery after being "diagnosed" by Enterolab. This is likely because eliminating gluten doesnt solve the issue of leaky gut...nor does it solve the issue which led to leaky gut in the first place.

Leaky gut = multiple food intolerance. There is really no other reason for a growing list of intolerances...other than the leaky gut.

In the case of leaky gut gluten and casein are the two primary intolerances. The immune system is more likely to respond to these proteins and the response can be autoimmune in nature....with or without Celiac.

When we test positive through Enterolab and remove gluten (and other offenders) from the diet....naturally we feel better....and naturally we PRAISE Enterolab....but do we really regain our health??

Unfortunately, in most cases the answer is no...we are simply eliminating a food that is causing symptoms by passing through the leaky gut. This is not a "cure"....so when you ask why so many of us still have a long list of intolerances...the answer is leaky gut.

In my opinion Enterolab is capitalizing on the fact that a great deal of people suffer from leaky gut due to many factors which have nothing to do with gluten. Gluten antibodies can be found in *anyone* who has a past or current problem with intestinal permeability.

There are *some* people who will experience a complete resolution of symptoms after receiving their Enterolab results and implementing the diet. These generally are not people who have the "gluten sensitivity" genes. They are people who have Celiac genes and their genes have actually been triggered so that the diet brings on healing.

I only know of one person here who is non-Celiac Enterolab diagnosed and symptom free after implementing the diet.

So...until Dr. Fine publishes and proves otherwise....my belief is that the "gluten sensitive" genes are not significant and the reason for elevated antibodies in these people (who do not carry Celiac genes) is leaky gut. Gluten is generally not a cause for leaky gut in the absence of Celiac Disease....although once leaky gut is established gluten does become a contributing factor....due to the immune response that has been provoked.

These are my opinions....I've been waiting for Dr. Fine to publish but I'm not really holding my breath at this point.

[CarlaB]

I tested positive with Enterolab and one of my daughters did, too. The other daughter I had tested came back negative. The two of us with gluten sensitivity (no celiac genes here) went gluten-free, then challenged it after about a year for me, six months for her. We are both truly sensitive to gluten.

However, I did not get better on the gluten-free diet, as Rachel mentioned. My underlying problem is Lyme Disease, yet my family has a history of GI issues so I think it does play a role ... I definately get sick from small amounts of it ... my "challenge" was a supplement with barley in it (didn't read the ingredients first! Oh well, wanted the challenge anyway).

My daughter had minor GI symptoms, but has trouble in school and I thought it may have to do with gluten brain fog. Apparently it didn't. Her GI symptoms are gone ... no tummy aches.

I don't think Enterolab can tell you anything more than a trial gluten-free diet can tell you, except for whether or not you have the gene. Give the diet a couple months, then challenge it and see how you do.

[jayhawkmom]

I'm really glad to read this thread. I've been toying with the idea of going to Enterolab for a more definitive answer, but keep coming to the same conclusion... they can't tell me any more than my blood tests already have. I know I react to gluten. I don't know why. But, I've had a positive response.

I'm not trying to be negative about the testing or those who have chosen to go this route. But, when there is no published research, no one has been able to reproduce the testing or the results, and most of the medical community looks that direction with suspicion rather than respect, it does make you stop and think.

I don't have hundreds of dollars to toss in Dr. Fine's direction. And, I know there are many folks out there who also really don't have it to spend, and yet... have because they figure it will help them "stick" to the gluten free diet if they have a piece of paper that says "gluten intolerant."

For me... the way I have felt since going gluten free means a whole lot more than anything that could ever be written on a piece of paper, regardless of who wrote it. And, that's really all I need to "stick" to this diet.

[celiacgirls]

karen,

That's interesting. Sounds like you went there to get tested for something else, is that right? And they discovered you have celiac disease?

I tested myself after my daughter tested positive there. My daughter did have GI symptoms but was always negative on the regular blood tests. I would have said I had no symptoms but I knew that you could have celiac disease and not know it. They didn't diagnose me with celiac disease but gluten intolerance.

At first, my plan was to follow the diet when my kids were around and eat what I wanted when they weren't. I was that skeptical that gluten was really a problem for me. But within days, I knew that eliminating gluten made me feel a lot better. I never cheat but my symptoms have come back from cc. I am so convinced now that I am very strict and almost never eat in restaurants because of cc.

My other daughter was also positive. She didn't have any GI symptoms before but she does now if she has gluten. She had behaviour problems which have gone away after giving up gluten and dairy.

I had read about diets helping children but the Enterolab results gave me reason to think it would work for her.

Please someone correct me if I'm way off. I'm new, I never heard of gluten, celiac or Enterolabs till 2 months ago, and all I know is what little I've seen here and one Gastroenterologist (not even mine) opinion. Let me just put what I think I know down and then you or others can let me know if it's right or not. I'm just trying to be straight about it 'cause honestly, I really would like to know what the facts are myself.

I think it's only natural to be skeptical of something as unorthodox as this type of testing. This is not just "a lab", as in "let's see, which lab are we going to use for our tests". This lab is the only place that offers these tests (is that right?). And this testing is completely different from any established, accepted medical tests? Because this test was developed by one doctor, a Dr. Fine who also owns the lab? I don't know anything about him, anyone?

And from perusing this forum for hours every day for two months, it seems as if the members that have these test results in their signature also are intolerant to a lot of other stuff. Is this just a coincidence? Heck, I'm personally afraid to get tested there as I don't want to get intolerant to dairy, soy, corn or whatever.

The gastro dr. said no other labs have been able to confirm his test results, and that is why he is suspect.

That's it. best regards, lm

From what I've read, Dr. Fine is well-respected by other doctors who know him and his work. He used to work at a university doing research until he opened his lab. I believe he has celiac, too. Just like many of us know more about celiac disease than most GI doctors, it makes sense that he would be more interested in celiac research than others.

I've also read that research similar to his is going on in Europe.

It is true he is unpublished and no one has been able to replicate his results yet.

Time will tell if he is onto something or taking advantage of the fact that many people have problems with gluten. To me, it doesn't matter. I got the answers I needed from him. True, you can get the same answers by trying the diet. That, in the end, is what convinced me. For the 3 of us in my family on the diet, it has helped.

Maybe we all have a leaky gut. My younger daughter is also intolerant to soy. I think she has been all along and we were blaming hidden gluten for it. She actually tested negative at Enterolab for it (9 with 10 being positive) but she does react to it. We are all casein intolerant. My score on that was a 10 but I do notice a difference when I eliminate it. I haven't read much about leaky gut because we are doing well with what we are doing but I wonder if we do have a leaky gut if it is caused by gluten. My younger daughter reacted to wheat from the very first time I gave it to her.

I do have a celiac gene and DQ1, a gluten intolerant gene. I don't know if the girls have a celiac gene but since my husband also has one, there is a good chance that they do.

All 3 of us are fine when we are avoiding our intolerances. The diet is working for us.