EnteroLab Result - I'm back after 7 years!

[gatewaytobeing]

Hi

After posting here May of 2009 the results of my seemingly negative celiac panel test, I've continued to suffer and go downhill with my health. Suspecting gluten despite the blood test results, I did some research on additional testing and found EnteroLab. I ordered the stool test and just got the results yesterday. Normal is less than 10 units, my count was 159 units. This has to do with IgA. I don't have the test in front of me right now to be more specific, however it said the recommendation was to follow a strict and permanent gluten-free diet. So, I'm back!

I'm having some trouble navigating this site now and can't seem to locate the main forum. I didn't think I'd ever find how to post this message! Anyway, now that I'm here I just wanted to say HI and ask if anyone has any comments about stool testing results and/or EnteroLab. I'm planning on getting at least one of my sons tested next. Also anything else you guys think I should know I'm grateful to hear it.

Thanks, Kath

[kareng]

You could try to get a new Celiac blood test?  If you are not currently gluten free?  Just because they were negative years ago, they could be positive now.

i wouldn't give that guy any more money.  If you are still negative for Celiac, you could still try gluten-free, you might be non- Celiac gluten sensitive.  Unfortunately, here aren't any reliable tests for it.  You could also look into a low FODMAP diet.  You would be gluten-free, but not need to worry about a little cc ( could take a burger off a bun, eat around the croutons, etc)

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Why don’t you recognize tests (stool tests or otherwise) for non-celiac gluten sensitivity that are currently available through companies like Enterolab or Cyrex?

We only embrace tests that have endured rigorous scientific evaluations. So far, these tests have received no evidence-based support.

Enterolab has never successfully published anything on the accuracy of stool tests (nor have any other stool test manufacturers, to our knowledge) making it difficult to confirm the research results. Because of this, we must make our decisions based on what has been published; Harvard, UCSD, and the American College of Gastroenterology all agree that stool tests are simply not sensitive or specific enough methods in screening for celiac disease.

We can say therefore with confidence that the test currently being used by these labs is not good enough. In fact, while it is true that about 40% of people with proven gluten sensitivity have elevated AGA-IgG, it is also true that about 15-25% of the healthy individuals who have absolutely nothing wrong also have elevated AGA-IgG. Hence, about 60% of gluten sensitive people do not have elevated AGA-IgG (making the test not sensitive enough); and about 20% of normal, non-gluten sensitive people have elevated AGA-IgG for no apparent reason (making the test not specific enough).

 

[gatewaytobeing]

Thanks Karen. Interesting. I'm a little confused by the article. It sounds like it is saying that stool testing brought on a high rate of false negatives in celiac children. I'm not seeing where it indicates false positives for anti-gliadin IgA in stool. I'm wondering if the difference is in the mechanism of gluten sensitivity or intolerance versus celiac. EnteroLab did not say I have celiac, and did not claim that the test was diagnostic for celiac. Just whether or not you are having an immune reaction in the gut to gluten. I tried doing some more web searches about gluten stool testing, and I was unable to find any additional studies or info that discounted it - just several articles that seemed to endorse its accuracy. Apparently, blood tests have about an 80% false negative rate? I am not sure what to believe, but I am open to learn. Please help me interpret the article you referenced, in regard to discrediting a positive IgA result. I know that intestinal biopsy is the "gold standard," but I have heard even that can be falsely negative, even if the person with celiac is eating gluten. Seems like a tricky condition to accurately diagnose. I thought about ordering EnteroLab's genetic test at the same time as I did the stool, but I called them to ask and they said it may not be necessary. That did make me feel as though they aren't just trying to get my money.

I'm feeling a little thrown off now, as I was determined that I had every reason to be strictly gluten free for life. This diet will/would be very hard for me to endure long term if I don't/didn't believe that it was necessary. I have SO many ridiculous health problems, and feel like crap every day.

[gatewaytobeing]

Please comment on the following:

From EnteroLab's website: EnteroLab is registered with the U.S. Government's Department of Health and Human Services department as part of the Clinical Laboratory Improvement Amendments (CLIA). This agency oversees clinical laboratory standards and quality. We have also opted for (at our own expense) third-party accreditation from COLA, a non-profit national laboratory accreditation organization. EnteroLab passed this accreditation inspection in 2001 and re-accreditation in 2003, 2005, 2008, 2010, 2012 and 2014 with the highest standards. COLA accreditation is given only to laboratories that apply rigid standards of quality in day-to-day operations and pass a rigorous on-site laboratory survey. COLA is approved by the federal government and sponsored by the American Medical Association, the American College of Physicians-American Society of Internal Medicine, the American Academy of Family Physicians, and the American Osteopathic Association.

[kareng]

Sounds like they do a good job running whatever tests they do?  What do you want me to say?  I just linked you to The Celiac Center in Chicago,  which is on the forefront of Celiac and Non- Celiac Gluten Sensitivity.  The fact that a company runs their tests in a clean facility in a consistent manner, does not mean their tests have been scientifically proven.  Its an odd thing about U.S. medical laws...

 

If you find it helpful for them to tell you not to eat gluten, then... have at it!  If it makes you feel better... Great! 

[gatewaytobeing]

Did you see this post or just the last copy/paste post? I'm asking legitimate questions, not ruling anything out. I'm also looking for SUPPORT, not attitude.

Thanks Karen. Interesting. I'm a little confused by the article. It sounds like it is saying that stool testing brought on a high rate of false negatives in celiac children. I'm not seeing where it indicates false positives for anti-gliadin IgA in stool. I'm wondering if the difference is in the mechanism of gluten sensitivity or intolerance versus celiac. EnteroLab did not say I have celiac, and did not claim that the test was diagnostic for celiac. Just whether or not you are having an immune reaction in the gut to gluten. I tried doing some more web searches about gluten stool testing, and I was unable to find any additional studies or info that discounted it - just several articles that seemed to endorse its accuracy. Apparently, blood tests have about an 80% false negative rate? I am not sure what to believe, but I am open to learn. Please help me interpret the article you referenced, in regard to discrediting a positive IgA result. I know that intestinal biopsy is the "gold standard," but I have heard even that can be falsely negative, even if the person with celiac is eating gluten. Seems like a tricky condition to accurately diagnose. I thought about ordering EnteroLab's genetic test at the same time as I did the stool, but I called them to ask and they said it may not be necessary. That did make me feel as though they aren't just trying to get my money.

I'm feeling a little thrown off now, as I was determined that I had every reason to be strictly gluten free for life. This diet will/would be very hard for me to endure long term if I don't/didn't believe that it was necessary. I have SO many ridiculous health problems, and feel like crap every day.

[kareng]

As I said on your other thread, I just want you to have some reliable info.  Asking me to explain why the goverment allows these tests?  I can't explain why the U.S. Goverment allows unproven lab tests or supplements.  Saying they have been inspected is equivalent to the fact that a McDonalds passes a health inspection.  It doesn't mean the food is healthy.  It just follows the procedures.  It just shows that the lab follows the accreditation rules.  That's all I am trying to say.  

 

If if you think gluten is a problem, you can take it out of your life and see if that helps.  If it does, that's great.  I wish you luck and good health.  

[cyclinglady]

Is there a reason you can not repeat the celiac blood panel?  If I recall correctly,  the ones you had were the old AGA tests that have been discontinued.  The current tests include the TTG, DGP (IgG and IgA versions) and the EMA.  Biopsies through via endoscopy are still the current standard of American and British Gastroenterology Associations/Colleges.  Stool testing is not even mentioned as a valid diagnostic tool.  Here are the links:  

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I am sure Enterolab,  as a lab,  does meet government standards or else they would be shut down, but that does not mean that leading celiac researchers, doctors, or insurance companies support this type of testing.  That is why Enterolab can not diagnose anyone with celiac disease.  They can just say that they could have a sensitivity to it.  

I do understand that there are a lot of doctors who do not know how to diagnose celiac disease.  It is tricky and there is no perfect test for it.  I also know that there are many people who are not getting proper testing and/or help.  So, I sympathize with you.

My hubby went gluten-free 14 years ago per the poor advice of his GP and my allergist.  It worked.  He has stayed the course.  But he will be the first to tell you that I have had way more support from family, friends and medical.  So, it can be done.  You can commit to a gluten-free diet for life.  I am fortunate that I had the tests and biopsy to prove it.  I needed it in order to be diet compliant.  I already knew how hard it can be to stay gluten free.   It also has made it easier for my kid to get tested and to continue to get testing every couple of years.  

I wish you well!  

[RMJ]

When a lab develops their own test, and only runs it in their own lab, they do not need to go through the rigorous FDA approval process for diagnostics.

[ravenwoodglass]

While not considered in any way diagnostic by most doctors I think there may be some significance to the Enterolab result.  If you feel the need for a doctors diagnosis (and there are really good reasons to get one) you should get to the doctor and get a full celiac panel run. Do make sure that they do the newest tests. Keep in mind that only one of those tests has to be positive to be celiac. Not all the panel needs to be in the positive level.

Do stay on gluten until all the testing you choose to do is finished. Just because your previous panel was negative doesn't mean it will be now.

 

[Galixie]

I also agree that repeating the blood tests might be helpful. Something might have changed since the last time you had them run. In addition to the newest tests, you might also ask them to re-run the AGA IgA test that was negative previously, because then you could compare your current result to the previous result. Unfortunately, many labs have discontinued that test so you may not be able to get it re-run.

I also wanted to point out that even the newest tests aren't without flaws. The only positive I've ever gotten was on an AGA IgA result. At the time I didn't really question it when I was told that result didn't indicate anything. By the time I thought to question it, the lab had stopped performing that test and I have since never had a positive result on any of the newer tests. It was only by going gluten free for a few months and then reintroducing it that I found out that I did have a reaction to gluten.

If you don't want to go for further blood testing, you could do what I did, which is to go completely gluten free for 3 or 4 months and then reintroduce gluten to see how your body reacts. If you decide to do that, I would recommend keeping a food and symptom diary starting from before you even go off of gluten so you have something concrete to look back through and determine what, if any, effect there is.