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Entero Lab Question

siglfritsch

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siglfritsch Newbie
siglfritsch
Posted

I'm assuming the Entero lab testing is for the celiac gene. If it comes back negative does that mean a person definitely does not have celiac but just gluten intolerance? How much does the testing cost and how is it done?

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psawyer Proficient
psawyer
Posted

While I am not familiar with the specifics, EnteroLab offers multiples tests, only one of which is genetic.

burdee Enthusiast
burdee
Posted

I'm assuming the Entero lab testing is for the celiac gene. If it comes back negative does that mean a person definitely does not have celiac but just gluten intolerance? How much does the testing cost and how is it done?

See Open Original Shared Link for info about their test prices. The gene test is a mouth swab kit which you do yourself and send back. The other tests are stool tests for gluten antibodies, casein antibodies, Ttg antibodies, malabsorption, soy antibodies, egg antibodies and yeast antibodies. All test for IgA antibody mediated reactions. I received my results in 3-4 weeks. You can also call or email E-lab with any questions you have. They are very helpful.

SUE

Skylark Collaborator
Skylark
Posted

Second post in this thread has my professional opinion of Enterolab.

As for genetic testing, there are occasionally biopsy-positive celiacs without DQ2 or DQ8 but it's uncommon. Positive genetic results don't mean much, as 30% of the population is DQ2 or DQ8, yet only an estimated 1-2% are celiac.

ravenwoodglass Mentor
ravenwoodglass
Posted

I'm assuming the Entero lab testing is for the celiac gene. If it comes back negative does that mean a person definitely does not have celiac but just gluten intolerance? How much does the testing cost and how is it done?

Enterolab tests for more than just the 2 generally accepted celiac associated genes. They also test for antibodies in the stool for gluten, casien, egg, soy and yeast as well as testing for fat malabsorption.

While some are skeptical of their testing I found them to be very helpful. It helped to explain why my arthritis went into remission on the diet. It turns out my celiac associated gene is DQ9. Gene testing before I was diagnosed celiac would have labeled me with RA (from my understanding and I am certainly no expert on genetics) and I would most likely be now dead as doctors would have labeled me with that.

Figured I should show at least one reference to how I came about that understanding-

Open Original Shared Link

"Recently, we have proposed that the combination of HLA-DQ and -DR alleles is responsible for the association of the HLA class II region with rheumatoid arthritis (RA). According to this model, some HLA-DQ alleles, namely DQ4, DQ7, DQ8, and DQ9, predispose carriers to severe RA"

The gene tests are not however diagnostic in themselves, no matter who does them. They are however a very valid piece of the puzzle. If you funds are limited IMHO you would be better off getting the stool testing done for the antibodies as that will give you more information if you can't afford both stool and gene testing.

Jestgar Rising Star
Jestgar
Posted

Just as a general statement, when gathering opinions on the internet, you should be highly suspicious of anyone who offers a "professional" opinion without proving their credentials, or citing credible, peer-reviewed journals to back their statements.

Skylark Collaborator
Skylark
Posted

Just as a general statement, when gathering opinions on the internet, you should be highly suspicious of anyone who offers a "professional" opinion without proving their credentials, or citing credible, peer-reviewed journals to back their statements.

Are you addressing my post, or Enterolab? The burden of proof of the usefulness of anti-gliadin IgA and anti-tTA fecal antibodies rests with them, not me. Enterolab does not provide any references about fecal antibodies, and if they have sponsored any studies, they have not seen fit to share the results in the peer-reviewed literature or even on their website. They do not even tell prospective customers the sensitivity and specificity of their tests, which I personally find somewhat misleading.

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  • 2 weeks later...
greenpear Newbie
greenpear
Posted

I'm assuming the Entero lab testing is for the celiac gene. If it comes back negative does that mean a person definitely does not have celiac but just gluten intolerance? How much does the testing cost and how is it done?

Stop don't use Entero Lab and spread the word. I thought I had a gluten intolerance and decided to go behind my doctor and used Entero Lab. The results came back and said of was gluten intolerant. I finally told my doctor what I did and she asked if I got any better. The answer was a big NO. So she redid the blood test and also did a small bowl biopsy which, as you know, is the gold standard for determining a gluten intolerance. I had NO damage in the small intestine therefore NO gluten intolerance. Entero Lab ripped me off. I eat lots of gluten these days and I having NO problems at all. (I actually had microscopic colitis and I'm fine now after taking asacol for 18 months) Please spread the word. Just find a good GI doctor and work with them.

burdee Enthusiast
burdee
Posted

Stop don't use Entero Lab and spread the word. I thought I had a gluten intolerance and decided to go behind my doctor and used Entero Lab. The results came back and said of was gluten intolerant. I finally told my doctor what I did and she asked if I got any better. The answer was a big NO. So she redid the blood test and also did a small bowl biopsy which, as you know, is the gold standard for determining a gluten intolerance. I had NO damage in the small intestine therefore NO gluten intolerance. Entero Lab ripped me off. I eat lots of gluten these days and I having NO problems at all. (I actually had microscopic colitis and I'm fine now after taking asacol for 18 months) Please spread the word. Just find a good GI doctor and work with them.

Gluten intolerance manifests in many ways OTHER than intestinal damage and gastrointestinal symptoms. Gluten intolerance does NOT always mean celiac disease. Celiac disease is the intestinal damage manifestion of gluten intolerance. So you can have gluten intolerance WITHOUT having intestinal damage. Read "Healthier Without Wheat" by Stephen Wangen, ND. That book describes all the ways gluten can harm the body, without causing symptoms of or damage related to celiac disease.

Elab didn't rip you off. Small bowel biopsy is the gold standard for determining CELIAC DISEASE, but not all forms of gluten intolerance. Colitis could also be caused by gastrointestinal bugs (parasites or bacteria). I had pseudomembraneous colitis caused by the clostridium difficile bacteria.

I'm glad you recovered from MC, but you may want to consider other physical (esp. nondigestive) symptoms, as you continue to eat gluten. If you develop any symptoms associated with autoimmune conditions or symptoms your doc can't explain, you may want to reconsider your gluten intolerance diagnosis.

Skylark Collaborator
Skylark
Posted

Greenpear, I'm so sorry to hear you got ripped off. Have you reported this to any consumer organizations? You might try Quackwatch as well.

ENF Enthusiast
ENF
Posted

I've often wondered if any of Enterolab's gluten intolerance stool test customers ever received results from them that determined they were NOT gluten intolerant? If they have, I wonder what the percentage is. B)

jerseyangel Proficient
jerseyangel
Posted

I've often wondered if any of Enterolab's gluten intolerance stool test customers ever received results from them that determined they were NOT gluten intolerant? If they have, I wonder what the percentage is. B)

I don't have any facts or figures for you, but from reading on here for the last 5 years or so, I do remember seeing a few people report negative stool testing from Enterolabs.

ravenwoodglass Mentor
ravenwoodglass
Posted

I've often wondered if any of Enterolab's gluten intolerance stool test customers ever received results from them that determined they were NOT gluten intolerant? If they have, I wonder what the percentage is. B)

There have been people on the board who have reported having negative tests. In some cases it was when one in the family was diagnosed celiac and all were tested. Since most of the folks that go to Enterolab are having issues I don't personally find it unusual that many would show up gluten intolerant. People that feel great and don't have symptoms don't get tested. Gluten intolerance and celiac are very common and many have suffered for years being told by doctors that they have IBS and then the doctors don't test further. The number of IBS patients in this country is very high, big pharma makes a fortune off them. Just look at all the stomach meds lining the store shelves. Do all IBS patients have celiac or gluten intolerance, of course not. Do all folks with celiac or gluten intolerance not have any other issues, that is of course not also. Have many been helped by gluten intolerance being diagnosed, well just look through the board. Some of us were really let down by conventional and naturopathic medicine which simply threw meds at us to try and control symptoms. If Enterolab can help those folks I am all for it. If the diet followed strictly doesn't help then you continue to look for what the problem may be. Should Enterolab be someones first step to diagnosis? No, the first step IMHO should always be conventional medicine but when convential medicine doesn't help, as in my case, Enterolab could be a valid part of the diagnostic process. If I had known of Enterolab it would have saved me thousands of dollars and years of pain and permanent damage because conventional medicine took a look at my false negative blood tests and considered the matter closed.

frieze Community Regular
frieze
Posted

we must remember, as raven mentioned, that the persons availing themselves of Enterolab are a self selected group. In that group, it would stand to reason the + rate would be high.

ravenwoodglass Mentor
ravenwoodglass
Posted

I would recommend that Enterolab not be part of solving your intestinal problems. Find a good GI doctor and stick with them. See my story below.

Stop don't use Entero Lab and spread the word. I thought I had a gluten intolerance and decided to go behind my doctor and used Entero Lab. The results came back and said I was gluten intolerant and to never consume any product with gluten. I finally told my doctor what I did and she asked if I got any better when I stopped gluten. The answer was a NO. So she redid the blood test and also did a small bowl biopsy which, as you know, is the gold standard for determining a gluten intolerance. I had NO damage in the small intestine therefore NO gluten intolerance. Entero Lab ripped me off. I eat lots of gluten these days and I having NO problems at all. (I actually had microscopic colitis and I'm fine now after taking asacol for 18 months) Please spread the word. Just find a good GI doctor and work with them.

We got your post the first time. Did you get any blood work or a biopsy before you went with Enterolab? Well if not you should have. I am sorry you feel the 'ripped you off' and glad you finally got smart about it and went to a GI doctor, which is what you should have done in the first place. By the way if you are gluten free or gluten light the blood and biopsy will be negative whether you are gluten intolerant or not. Enterolab can be very helpful for those of us who are false negative on testing with conventional GI doctors. Folks are always told here to see a GI doctor first if they can and if the gluten-free diet does not help they are told to keep looking for the cause. Enterolab does not diagnose anything they simply tell you if you are making antibodies to a substance. I am glad your feeling better and finally got yourself to where you should have gone in the first place, the doctor.

nora-n Rookie
nora-n
Posted

greenpear, Enterolab did not rip you off, since the test actually was invented and developed to find microscopic colitis, which responds to gluten and gets better on a gluten free diet but some do need other medicines.

So it turned out you have microscopic colitis, and this is what the test was about....

He discovered the test also was useful to catch gluten intolerance before the villi were damaged, something like the early stages of celiac.

I got hashimotos some years ago , triggered by thyrodi antibodies triggered by gluten, and I have mostly neurological symptoms from gluten. The effects of gluten are much more severe in other parts of the body than the gut.

I am double DQ5, which is DQ1, and Hadjivassilou found that about 20% of his gluten ataxia patients were DQ1.

Laely, they found the antibody responsible for gluten ataxia, ttg-6 together with antigliadin which was known from before. The antibody involved in DH is ttg-3.

The antibody for ordinary celiacs is ttg-2.

Skylark Collaborator
Skylark
Posted

That's the whole problem. Fecal anti-tTG is a marker for Crohns and inflammatory bowel disease as well as celiac. The specific marker for celiac is fecal anti-endomysial antibodies. It is irresponsible and dangerous to diagnose celiac without testing for anti-EMA or ruling out inflammatory bowel disease with other tests or a scope.

Open Original Shared Link

I have yet to see a cut-and-paste of an Enterolab report on this board that mentions the possibility of any disease other than gluten intolerance/celiac even with a positive anti-tTG result.

Fecal anti-gliadin IgA suffers from all the same problems as serum AGA and all the various other tests for food intolerances. It's not specific, especially as an isolated result. Enterolab recommends a lifetime gluten free diet and makes veiled threats about neurologic damage and osteoporosis based only on fecal AGA. Again, even if the test might be useful, I find the recommendations irresponsible and unsupported by peer-reviewed research.

ravenwoodglass Mentor
ravenwoodglass
Posted

That's the whole problem. Fecal anti-tTG is a marker for Crohns and inflammatory bowel disease as well as celiac. The specific marker for celiac is fecal anti-endomysial antibodies. It is irresponsible and dangerous to diagnose celiac without testing for anti-EMA or ruling out inflammatory bowel disease with other tests or a scope.

Open Original Shared Link

I have yet to see a cut-and-paste of an Enterolab report on this board that mentions the possibility of any disease other than gluten intolerance/celiac even with a positive anti-tTG result.

Enterolab does not diagnose anything. They simply tell you whether your body is making antibodies.

They also state on their website that if problems continue after eliminating gluten the person should be checked for other issues like Chrons.

burdee Enthusiast
burdee
Posted

I've often wondered if any of Enterolab's gluten intolerance stool test customers ever received results from them that determined they were NOT gluten intolerant? If they have, I wonder what the percentage is. B)

I've been on this board since 2004. I can't remember many reports of negative tests, though I do recall a few. (You might want to do a board search.) If they get negative gluten intolerance results, they probably don't post on this board. Also people who are willing to pay out of pocket for Elab tests usually have severe enough symptoms or a history of symptoms and misdiagoses. Many of them have already stopped eating gluten, because they know that they react badly to gluten. So they don't want to eat gluten just to take a test which will confirm that they should not eat gluten. Nevertheless, they want a diagnosis from someone so they can tell their friends and family that they have gluten intolerance. They can use that diagnosis to fight off the family 'food pushers' who say "A little bit won't hurt you."

SUE

Skylark Collaborator
Skylark
Posted

I've been trying so hard to leave the Enterolab thing alone, but it keeps coming up and every time people talk about it I'm angry at Dr. Fine all over again for misrepresenting and overinterpreting the test results he offers. I find the whole thing genuinely upsetting as I feel like I'm looking at a scam and I'm the kind of person who hates to see sick, desperate people manipulated out of hard-earned money. It's perfectly reasonable to measure the things he does. It has even helped some people on this board. Thing is, it's not reasonable to hide the sensitivity and particularly the specificity of the tests, or to not mention non-celiac diagnoses. You are buying a "pig in a poke" so to speak, and for a lot of money!

How is this not a diagnosis? "....follow a strict and permanent gluten free diet" is pretty unequivocal.

"Interpretation of Fecal Anti-gliadin IgA (Normal Range is less than 10 Units): Intestinal antigliadin IgA antibody was elevated, indicating that you have active dietary gluten sensitivity. For optimal health, resolution of symptoms (if you have them), and prevention of small intestinal damage and malnutrition, osteoporosis, and damage to other tissues (like nerves, brain, joints, muscles, thyroid, pancreas, other glands, skin, liver, spleen, among others), it is recommended that you follow a strict and permanent gluten free diet. As gluten sensitivity is a genetic syndrome, you may want to have your relatives screened as well."

I can't find a cut & paste of a positive anti-tTG result right now but I know I've seen them and they didn't mention inflammatory bowel disease.

I find the threatening tone of the gliadin IgA blurb pretty disturbing, to be honest. It's probably useful for manipulating skeptical family members into listening to people who already know they need to be gluten free but it's not ... fishing for words... good medicine ... correct ... honest? :blink:

Shouldn't it read more like "Your positive results suggest that you could be gluten sensitive. We recommend trying a gluten free diet to see whether your symptoms resolve. ??% of people with this test result feel dramatically better on a gluten free diet. If you find the diet is necessary to relieve your symptoms, you should follow it permanently to avoid malabsorption and damage."

Fooey. Now I'm all upset again. :(

ravenwoodglass Mentor
ravenwoodglass
Posted

Shouldn't it read more like "Your positive results suggest that you could be gluten sensitive. We recommend trying a gluten free diet to see whether your symptoms resolve. ??% of people with this test result feel dramatically better on a gluten free diet. If you find the diet is necessary to relieve your symptoms, you should follow it permanently to avoid malabsorption and damage."

Fooey. Now I'm all upset again. :(

I do agree that your wording may be more appropriate. I don't agree that he is giving a diagnosis however of anything other than the antibody reaction.

One nice thing about this board is that all opinions are welcome.

Skylark Collaborator
Skylark
Posted

If other folks don't read that as a diagnosis, I feel a little better.

ravenwoodglass Mentor
ravenwoodglass
Posted

If other folks don't read that as a diagnosis, I feel a little better.

I am glad you feel better, you're to valuable a member to lose. :)

Skylark Collaborator
Skylark
Posted

I am glad you feel better, you're to valuable a member to lose. :)

:wub: You are too kind.

I'm not going anywhere. Having some e-friends like you and the other folks on this board is so nice!

Lisa Mentor
Lisa
Posted

I am glad you feel better, you're to valuable a member to lose. :)

agreed! :D

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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