Blood Testing for Celiac Disease Isn't Very Accurate

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.

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.

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.

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.

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.

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)."

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.

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.

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.

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.

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.

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!!

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.

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!!

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 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.

Beautiful comment, and spot on. Love that reference to the medical literature too. Everything about your post was excellent. Rock on, baby!!!

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.

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 b$#@@#$$ 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!!