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Blood Testing for Celiac Disease Isn't Very Accurate


Tina Turbin is an author, researcher, and gluten-free advocate.

This article originally appeared in the Autumn 2010 edition of Journal of Gluten Sensitivity.

Celiac.com 01/10/2011 - As an author, researcher, and gluten-free advocate, I work hard to raise awareness for celiac disease and gluten issues, particularly when it comes to increasing the diagnosis rate. Part and parcel of improving diagnosis is proper testing. Evidence is mounting that indicates that blood testing may not be the most effective way to test for celiac disease, and I would recommend that people who suspect they have celiac disease to check with their doctors about other testing options.

Celiac disease, which is essentially an autoimmune reaction to gluten, a protein found in wheat, barley, and rye, affects approximately three million Americans, but according to estimates, only three percent of them have been properly diagnosed with the disease. Once celiac disease is diagnosed, treatment is simple—following a gluten-free diet. With so many American celiacs going without a diagnosis,  this painful and potentially fatal autoimmune disorder, with its easy method of treatment, attention needs to be focused on effective, efficient testing.

Although awareness of celiac disease and gluten-free living is increasing in the various medical fields, accurate and reliable testing has not been definitively tackled or uniformly implemented by medical practitioners. Currently a popular method of testing is a blood test, but some people with celiac disease can get blood testing many times and the results will nevertheless be negative.

Although blood testing has been successful in diagnosing some people with celiac disease, this method is inaccurate at least 80 percent of the time, according to Dr. Datis Kharrazian, Blood Chemistry Seminar instructor and the formulator for Apex Energetics, Inc. supplements. To understand how blood testing works, a basic grasp of the workings of the immune system is essential. Antibodies are part of the immune system and designed to attack specific antigens, or invaders, of the body. Tests can be conducted that find an increase of antibodies in the system, which are on the prowl for certain foreign invaders. Specifically, anti-gliadin, or anti-gluten antibodies, can be tested for; when these exist in the system in large amounts, it is a sign of the autoimmune disorder, celiac disease. Although this may sound workable in theory, in practice blood testing is insufficient and inaccurate due to the fact that the autoimmune response doesn’t occur in the blood stream, but in the small intestine, as the immune system attacks this organ’s absorptive finger-like structures called villi which line the inside. Thus, for the sake of reliability, this suggests that testing should be focused on the gut.

So what method can we turn to? Fortunately, there is another method apart from an intestinal biopsy, which is an invasive as well as expensive procedure. It turns out that the immune cells which surround the gut also can be located in large numbers in the stool, making a stool anti-gliadin antibody test a reliable alternative to blood testing.

Stool testing may be more accurate than blood testing and is more convenient. One doesn’t need a doctor’s prescription for the test, which can be conducted in the privacy of one’s own home with an online-ordered kit from EnteroLab, which according to its website, is “a registered and fully accredited clinical laboratory specializing in the analysis of intestinal specimens for food sensitivities.”

Enterolab offers the Anti-Gliadin Antibodies Stool Test as well as additional tests which can be ordered may be important diagnostic tools for people who have celiac disease or gluten-sensitivity. These additional tests include the Tissue Transglutaminase Stool Test, which tests whether gluten is actively attacking the intestine and other tissues, the Malabsorption Test, used to determine whether the intestine is malabsorbing nutrients due to the autoimmune reaction to gluten, or the Celiac and Gluten-Sensitivity Gene Test. The lab also offers a Milk Sensitivity Test, which tests for reactions to casein, a milk protein

With millions of celiac Americans living with their disease undiagnosed, we can’t afford to waste time with inaccurate and inefficient testing. The anti-gliadin antibodies stool test, so easily available to the public, is a great stride forward for the celiac community.

Talk with your health care provider today about this alternative to celiac blood testing.

Celiac.com welcomes your comments below (registration is NOT required).



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23 Responses:

 
bo denski
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said this on
17 Jan 2011 5:51:57 AM PST
Does not cite any scientific literature just the company selling the stuff. Do a pubmed search, talk to a few doctors that will go on record, then the article.

 
Kristine
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said this on
17 Jan 2011 8:06:50 AM PST
All the "scientific evidence" comes from companies who market products like supplements and other nontraditional treatments, such as Apex Energetics and EnteroLab. Celiac.com should weed out such marketing efforts that are posing as objective science.

 
CeliBelli
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said this on
18 Jan 2011 11:16:42 PM PST
Ms. Trubin displays a dismally poor grasp of human anatomy and autoimmune response. Based on her logic, there could be no grounds for the correlation between celiac disease and Hashimoto's Thyroiditis. And yet there is such a correlation, just as there is a correlation between celiac disease and lymphoma. Why? Because - contrary to Ms. Turbin's assertion that celiac all happens in the gut - Celiac is a systemic disease that involves complex processes all over the body. Those processes entail the communication of antibodies throughout the body via the blood stream. While it is true old methods of blood testing were not as reliable, there are labs that have developed highly accurate blood and saliva tests both for celiac antibody and genetic testing. Among these are Prometheus Lab based in San Diego, and Kimball Genetics in Denver. Both use the most advanced testing available for celiac disease available today. And both now offer cheek swab testing which can be done at home.

 
Smart Donkey
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said this on
26 Sep 2012 6:33:17 PM PST
This company was purchased by Nestle last year. Sure, feed us all Gerber, Nesquik, and Hot Pockets. No problem, I'll send you my DNA so you can test me for GI diseases and other disorders for eating too much bad food. Conflict of interest? Noooo, not at all. I would rather pay for an endoscopy and find out for sure instead of paying for probability analysis.

 
Sarah
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said this on
19 Jan 2011 9:29:15 PM PST
As far as I know, NO medical community agrees with stool testing as having any indication to suggest celiac disease. Furthermore, many people can have positive anti-gliadin antibodies and NOT have Celiac. Anti-gliadin is false positive in many subgroups of people, hence why it is not usually used anymore to diagnose celiac. Stool antibodies are even less specific as far as I know. Enterolab has not ever released its work for peer review, so there is little data to say stool testing means anything other then your immune system has simply had exposure to the food protein in question and remembers it. It may or may not mean anything. I do think the article raises some good questions, though.

 
Sandi S.
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said this on
23 May 2012 7:57:12 AM PST
I just went to my doctor yesterday, and he recommended the same lab and tests that are suggested in this article. So, clearly the medical community does support this type of testing for this issue. He used this lab/tests for his own family and recommends it to patients. I am going to do more research before I do this testing on my daughter. I thought this article was very enlightening.

 
Jeff Kelly
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said this on
23 Jul 2015 1:16:46 PM PST
I do agree that Enterolab does good work, although if I have one criticism, it is only that it fails to understand that if a patient does not have malabsorption during testing, it doesn't mean no celiac exists and malabsorption did not exist at some prior point in time(or could exist at some future point in time under the "right conditions" for the celiac). Thus, the criticism I heard above does not strike me as accurate, balanced, or according to what we sufferers have had to go through out there. Enterolab is certainly better than no testing, including the gene testing for certain, which has been shown in the literature, and thus to characterize Enterolab as off in the vapor or ether somewhere is quite inaccurate. I do agree that as more and more labs do this kind of testing, we need to look at others too. For me it was 45 years of being ignored and wasting away. Photos of myself as a child demonstrate the emaciation. I was thrown into Psychiatry back then and have been many times since, and I can tell you any science is better than no science, any affirmation is better than none, and what we seem to be seeing is physicians catching up with what is going on in labs out there--as opposed to the labs catching up with the ignorance of physicians in the past. That's a positive development--and while some criticism might be leveled on certain aspects and details, overall what we are seeing out there is positive.
Now also it has been discussed in professional seminars that the blood tests are not as accurate as they could be, so this assertion is quite according to established facts and discussion on this topic, and cannot be just dismissed. The biopsy portion is what G.I. docs hang their hat on--yet most do not order any. I certainly suffered for 45 years without having one being ordered, and once one was, I was strictly gluten free and of course it turned up nothing under those conditions. G.I. docs have a long way still to go with this--which is of course contrary to their medical training, which, as the film "Patch Adams" documented, is akin to teaching religion and doctrines. Sometimes religion and doctrines on certain topics have to be unlearned before actual learning can occur. And that is most certainly the case in celiac sprue. I wish everyone would return to the original medical name of celiac sprue, because it just seems to me the name itself has been bastardized to the point of being an easy target for a joke.

 
Sarah
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said this on
19 Jan 2011 9:38:51 PM PST
I also wanted to add that EMA blood testing is almost 100% specific for Celiac (although not quite that sensitive), so it is very accurate in that regard. Mayo Clinic now also uses a form of an IgG anti-gliadin test and/or another test they designed (I forget the name) which is more specific than the IgA anti-gliadin test, which often is not accurate. Some Drs still use TTG as well. Regardless, a biopsy is still usually considered the standard for testing, along with blood work and clinical symptoms (if any). Genetic testing can be done as well, which doesn't prove Celiac on its own, but if negative can virtually rule it out. Non-Celiac gluten sensitivity is a whole different condition it seems, so most of those cases would likely test negative to all current Celiac testing, including blood work. Bottom line, if you think you truly have Celiac, it's crucial to have an official diagnosis on your chart. You don't want to be fed gluten in the hospital while recovering from surgery for example. Unfortunately, only blood work combined with a biopsy can offer that at this time. Don't waste your money elsewhere.

 
Jeff Kelly
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said this on
23 Jul 2015 1:22:16 PM PST
I would agree folks SHOULD go for the intestinal biopsy, but many doctors pooh-pooh it. It sometimes isn't enough to be EMACIATED either--the docs simply have unreformable BIASES against evaluating for celiac sprue (they were taught in their INDOCTRINATION in med. school that they would never see a case in their lifetimes and if they ever did it would be a serious FLUKE). Fasano's data states 1% of AMERICA. That's hugely more common than med. school training teaches, and it is a waste of time arguing with someone who believes in a RELIGION moreso than actual reality such as what we celiacs have had to go through in our WASTED LIVES, in many cases. PERIOD!!

 
Jeff Kelly
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said this on
23 Jul 2015 1:27:33 PM PST
You make EXCELLENT POINTS HERE, but in my experience physicians remain UNHELPFUL with any of this due to certain BIASES AGAINST celiac sprue, particularly in MEN. John F. Kennedy was a man, wasn't he? The steroids literally kept him functional as a celiac (then as the old saw goes life sucks and then you die). Well anyway doctors don't or won't consider celiac sprue in men unless and until you are at death's door and then they might do something useful, like snip off your penis or something. That's about the level of expertise they have in my experience--and continue to have. They still don't know a damn thing about it, and do not wish to know and do not wish to know mostly that what they've been taught about it is in many cases WRONG--such as prevalence, and such as the sequelae from it being as WRONG as their ignoring this issue FOREVER. PERIOD. PARAGRAPH!!

 
John
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said this on
20 Jan 2011 7:54:35 AM PST
Interested in the scientific papers behind this.

 
Jenny
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said this on
23 Jan 2011 4:38:27 PM PST
Forget the blood test, save your money for Enterolab. I see 5-10 people everyday at my gluten free bakery that had a positive biopsy but negative blood test. The blood test is a crime sending patients out the door with a 80% false reading to then later develop an irreversible life threatening disease(s). Many scientifc papers and real life people prove the blood test is "old school".

 
KC Nelson
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said this on
10 May 2011 12:10:10 PM PST
Although I can't verify the veracity of Enterolab, I do know that my blood work has been frustratingly negative. I've known I had Celiac for 10 years, I've been tested twice: both negative. I do an elimination diet and within days I am a different person. With a diagnosis I would have much more credibility, but I have determined to live my life gluten-free like I know I should. It is unfortunate we don't have a basic standard we can all agree on.

 
Halli Magg
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said this on
15 Aug 2011 3:13:56 PM PST
Is this really an autoimmune disease? The immune system attacks the gluten which is not auto (one self) and the damage to the villi is collateral damage.
I'm just asking as I have never seen gluten intolerance being described as an autoimmune disease, although I understand it can be a starting point for one.

 
Jen
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said this on
07 Nov 2011 9:11:03 PM PST
It is an autoimmune disorder, yes. The immune system does not attack the gluten, it directly attacks the lining of the small intestine. Gluten intolerance is different than celiac disease, and is not an autoimmune disorder.

 
superluminal11
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said this on
06 Sep 2011 8:03:49 AM PST
I am impressed that many of you can see the marketing (how can I make more money) off this scientific data. The Pharma Giants do this to the doctors as well in 1 hour meetings by sales people with lovely personalities. The result...no one ever really gets WELL. But hey...more money is floating around out there in the market right? Money is what makes the world go around right? Mmmmmmm mmm...LOVE THAT MONEY

 
Jen
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said this on
07 Nov 2011 9:34:00 PM PST
Although I am typically skeptical of less-accepted resources, I'd say that this article is spot-on. I tested negative for celiac disease for 8 years. I was severely ill, had multiple vitamin deficiencies, yet always tested negative. Finally, after another bout of severe illness, I tested positive. Funnily enough, my gastroenterologist knew that the test results weren't accurate, and knew to keep retesting me for it.

My biopsy, however, was negative. But it was then I learned that due to the endoscopy's limited ability to reach even most of the intestine, the results of biopsy are actually a) positive or b) inconclusive; as opposed to positive or negative. My gastroenterologist made the diagnosis based on a positive blood test, vitamin b12 deficiency and a positive reaction to the gluten free diet.

Yet what happened during those 8 years? There are many theories as to why blood tests are inaccurate, and I'd say the theory presented in this article is the best theory: the antibodies measured in testing only measure antibodies in the blood stream, not the digestive tract.

If you are looking for a more acceptable resource, then look no further than the British Medical Journal and a study written back in the 70s about antibodies in the gut, and the lack of reliability of testing, and which suggests that there is more reliability from testing conducted on feces and saliva. Because URLs are no allowed in comments, evidently, please Google "The demonstration and function of antibodies in the intestinal tract."

I'd personally say save your money and get genetic testing, vitamin/mineral testing, and try the gluten free diet. I'd even bet that many people with supposed "gluten intolerance" actually have celiac disease, but had negative test results.

 
Jeff Kelly
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said this on
23 Jul 2015 1:30:33 PM PST
Beautiful comment, and spot on. Love that reference to the medical literature too. Everything about your post was excellent. Rock on, baby!!!

 
Morna Erwin
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said this on
08 Oct 2012 6:28:08 PM PST
I suffered from dermatitis herpetiformis for over a year before being diagnosed as celiac. The rash on my buttocks was bilateral and the itching would wake me up in the middle of the night. My doctor kept treating me for herpes, although it never improved even a little bit.

Once I found out what it was, I sent away for testing from Enterolab, and tested positive on IgA antibodies and Anti-tissue transglutaminase IgA antibodies. I immediately went on a gluten-free diet and the rash went away completely, although it will itch if I get accidental cross-contamination.

My gastroenterologist ran the blood test on me and did endoscopic biopsy, but both were negative. Of course, I was already 3 weeks into my gluten-free diet.

My primary care physician accepts Enterolab results. Other food sensitivities Enterolab found (milk, corn, oats, pork) have also helped me design a diet that has improved my health.

 
Kareng
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said this on
04 May 2013 8:02:18 AM PST
Don't get your "medical info" from someone with a product to sell. Ask real doctors who study and treat the disease.

"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)."

 
Stella
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said this on
13 Jul 2013 3:32:46 PM PST
There is no scientific research validating antibody stool tests. However, Ms Turbin is correct in that the traditional blood test for Celiac disease, which measures antibodies to only one protein from wheat, produces many false negatives. That is why many researchers have concluded that assessing immune responses to multiple wheat fractions, not just alpha-gliadin-33, is the best method for assessing gluten reactivity (see the various publications of Camarca, Vader and Vojdani). Just because a healthcare practitioner orders the stool test, it doesn't mean it has been accepted by the medical industry. Many practitioners turned to the stool test because of convenience, or frustration with the many false negatives of the blood test. The best thing is to simply avoid gluten altogether. If you feel better, then you know. Why waste time and money with doctors and tests when the solution is within your own power? Your doctor can better serve you by fixing the gut damage you have acquired after consuming gluten (and dairy) for decades.

 
Jeff Kelly
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said this on
23 Jul 2015 1:34:55 PM PST
You ask a good question but another poster had a good answer: because official medical affirmation is useful, such as if you are in the hospital with some surgery or something and your diet needs to be strictly gluten free(hospitals do a notoriously bad job at knowing what this is or how to serve it anyway, but at least you have a step up on this). It can also serve as notice to Psychiatrists, which is a human rights abusive industry(ie, the mental illness industry), that you have an affirmed medical condition and not a bullshit invented condition to make Psychiatry, hospitals, and pharmaceuticals rich or should I say "keep them rich." Ok, and the other reason is for family, friends, and perhaps even the community at large, who may regard you positively if some or all of those know you have an actual medical condition instead of a phony, Psychiatric industry sounding nonsense condition. That about wraps up my answer!!

 
kelley

said this on
05 Mar 2014 11:45:04 AM PST
Another consideration is the cost I just had celiac blood work done from the Cleveland Clinic at a cost of over $500 dollars, and it was negative so the doctor wants to do a colosomy.




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