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Jane Anderson

Study Sees Low Gluten Sensitivity Rate, But Dr. Fasano Disagrees

By October 25, 2012

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Research presented at this week's American College of Gastroenterology meeting reported that the incidence of gluten sensitivity is far lower than the 6% to 7% of the population reported by many experts -- more in the range of 0.55%, or one in every 200 people. That's actually the lowest estimate for gluten sensitivity to date, and would make the cadre of gluten sensitivity sufferers only half as large as the group believed to suffer from celiac disease.

 

However, at least one top clinician in the field believes that the new study is flawed, and that many more people have gluten sensitivity than reported.

The dispute sets up a potential argument between the Columbia University Celiac Disease Center, where the study was performed, and the University of Maryland Center for Celiac Research, which performed earlier research on gluten sensitivity and whose director believes that up to 7% of people may have the condition.

The Columbia University study used data from the Centers for Disease Control and Prevention's Continuous National Health and Nutrition Study (NHANES). Participants in the study answered questions about whether they ever had been diagnosed with celiac disease, and the study also collected celiac blood test results.

If someone had been tested for celiac disease and was found not to have it, but still followed the gluten-free diet, then the Columbia University researchers labeled that person as gluten-sensitive for the purposes of their study. Out of 7,762 people, the study found 49 who fit that criteria, for a prevalence rate of 0.55%.

Slightly more women than men had the condition, according to the study. In addition, people with non-celiac gluten sensitivity tended to be older than the average NHANES participant (47 years old versus 40 years old) and had higher levels of so-called "good" HDL cholesterol, lower iron levels and lower body mass index.

The Columbia University researchers concluded that "the estimated prevalence of NCGS [non-celiac gluten sensitivity] in the U.S. is 0.55% which is approximately half that of celiac disease." They did say more studies are needed to fully understand the prevalence of the condition.

The research would seem to indicate that the gluten-free diet shouldn't be anywhere near as popular as it is, and that lots of people are eating gluten-free without cause. However, Dr. Alessio Fasano, director of the University of Maryland's celiac center and a top gluten sensitivity researcher, blasted the study, calling it "extremely biased" and "not informative."

Dr. Fasano told me that the study is based "simply on what patients report without an active process of diagnosis as outlined by current guidelines," which would lead the study authors to miss lots of gluten-sensitive people who don't yet realize they're gluten-sensitive (akin to how so many celiac disease sufferers remain undiagnosed).

"Furthermore, the current gluten-free market suggests that a much larger number of individuals embrace a gluten-free diet as compared to the numbers in the self-reported questionnaire," Dr. Fasano said. He added that any projected prevalence of gluten sensitivity will need to wait until a test for the condition has been developed.

If Dr. Fasano's 6% to 7% estimate is correct, around 20 million people in the U.S. alone could be gluten-sensitive. And his estimate isn't even the highest one out there -- read more in my article How Many People Have Gluten Sensitivity?

Honestly, I think the Columbia University study is flawed for a different reason: it only counts those who have been tested and found not to have celiac disease, but who went gluten-free anyway ... perhaps even against the advice of their physicians.

It doesn't count people who eat gluten-free because doing so cures their migraines, or eczema, or brain fog, or digestive symptoms, but who weren't tested for celiac disease. And it doesn't even try to count people who might find that the diet alleviates their symptoms, but who haven't gone gluten-free yet, possibly because no medical professional has suggested it.

For more on gluten sensitivity:

Keep up with the latest in the celiac disease/gluten sensitivity world -- sign up for my newsletter, connect with me on Facebook or follow me on Twitter - @AboutCeliac.

Photo © Getty Images/Adam Gault

Comments
October 25, 2012 at 8:45 pm
(1) Laura says:

That is a *very* strange way to count gluten-sensitive people, for all the reasons you list, Jane. I’m just shaking my head trying to imagine why they thought that was a good idea!

October 25, 2012 at 9:17 pm
(2) fennel says:

The doctors are always way behind what we already know, perhaps they have another agenda rather than the wellbeing of patients. Untreated celiac or gluten sensitive patients might go down with other conditions that will require lots of expensive patented drugs, tests and treatments.

October 26, 2012 at 12:21 am
(3) Doug says:

It is perplexing, confusing, and mostly subjective. It is as if each seemingly conductive element that provokes our immune challenge is completely disproporttionate to the public at large. It is truly a difficult position to be in, the ‘afflicted’ one. The complexity of the human body is undetermined, and slightly tilted with each person and their pain. I should say that with the overwhelming information pertaining to our health issues, we are the lucky ones – for we understand to be humble. The irony of awareness is both our strength, and our weakness. Instinct allows us to navigate…just trust it. And that was me thinking out loud. Have an healthy day!

October 26, 2012 at 12:07 pm
(4) Peter Olins says:

Janeó
Have you read the conference abstract on the prevalence study? Does it relate to their recently published work on celiac disease prevalence, or is this something new? There’s lot to discuss on this topic, but I need to know that we are talking about the same thing. THX.

The Prevalence of Celiac Disease in the United States. Am J Gastroenterol (2012) doi:10.1038/ajg.2012.219 Rubio-Tapia, A., et al.

October 26, 2012 at 4:38 pm
(5) celiacdisease says:

Hi Peter,

We’re talking about two different studies. Here’s the citation: Prevalence and Characteristics of Non-Celiac Gluten Sensitivity in the United States: Results from the Continuous National Health and Nutrition Examination Survey 2009-2010. Program No. P149. ACG 2012 Annual Scientific Meeting Abstracts. Las Vegas, NV: American College of Gastroenterology.

Jane

October 29, 2012 at 2:23 am
(6) Ken Seehart says:

I appreciate that this article is trying to be balanced, but this might be one of those cases where one “side of the argument” is so silly as to break any semblance of symmetry.

Consider: Does the Columbia University definition of non-celiac gluten sensitivity make any sense?

“… someone had been tested for celiac disease and was found not to have it, but still followed the gluten-free diet…”

Huh? That is so wrong on so many levels.

Why would anyone expect the set of people who choose to be tested for celiac, test negative, and then decide to avoid gluten, be somehow equated with the set of people who have an adverse response to gluten (without celiac)? I could see perhaps and argument for the expectation of a positive correlation between these to groups, but certainly not anything resembling equivalence. How anyone could receive a PhD without understanding the distinction between correlation and equivalence is beyond me.

Conclusion: 2.1% of males ages 18-24 are good at basketball. For the purpose of my meta-study, the definition of a good basketball player is a height of 6’3” or greater. And look, as a good scientist, I even included a reference to prove my case:
http://www.allcountries.org/uscensus/230_cumulative_percent_distribution_of_population_by.html

November 2, 2012 at 6:50 pm
(7) Patti says:

I wonder how many people just stop eating certain foods because they make them sick? How would you count them?

November 7, 2012 at 4:43 pm
(8) Kelly says:

Interesting! Hmm…

Did you read my blog about a conference call earlier this year with Dr. Guandalini, head of the University of Chicago Celiac Disease Center? Mentions non celiac gluten sensitivity and how there is NO way to test for it. I find it strange that money was spent to even try to study a prevalence without any indicators.
http://www.celiacchicks.com/uncategorized/what-is-gluten-free.html

November 12, 2012 at 4:06 pm
(9) Since1962 says:

Follow the money. Wheat makes people sick, which is why Monsanto invested millions to keep labeling suppressed. It doesn’t ciost anything to avoid it, it’s just hard to get past the addiction problem. Stop eating bread, flour, batter-fried food…. Can’t do it, can you? You are OWNED. Even those who have read Wheat Belly have a tough time stopping the wheat. It is an opiate.

March 4, 2013 at 10:30 pm
(10) Jennifer says:

I don’t believe there is NO WAY TO TEST for non-celiac gluten sensitivity. The problem is that for the most part doctors have been denying it and ignoring it, and have hardly looked for ways of testing for it. Why not consult the patients who have it (those of us who cannot tolerate gluten but have had celiac ruled out). Also, for those of us who are first degree relatives of diagnosed celiacs and experience identical symptoms (to celiac relatives) when we are glutened – I question the claim that what we have is totally unrelated to celiac. That kind of claim fails the “ten year old test” (the test most famously failed by the Emperor’s new clothes). I am happy to see there is a study of non-celiac gluten sensitivity being conducted in Italy and also in Maryland (according to a US govt database of studies). There should be more such studies. Maybe when the results come in, and doctors see non-celiac gs can cause severe stomach upset and steatorrhea, as well as vitamin deficiency, and other systemic illness (like frequent infections, including pneumonia), perhaps then the theory of celiac vs. non-celiac gs can be rearranged to something which makes more sense. The most fundamental problem with the science seems to be the idea (assumed but never explicitly explained or defended) which puts villi as the central organizing feature of the entire celiac theory. Why is damage to villi in particular any more fundamental or important than any other aspect of the celiac condition? Perhaps if this were adequately addressed, some of the issues surrounding non-celiac gluten sensitivity would become clearer as well.

April 22, 2013 at 4:10 pm
(11) Joy in Seattle says:

There is a serious problem in the MEDICAL community in confusing celiac with wheat sensitivity. Since I was a child, I’ve had severe head aches, digestive problems, intermittent joint pain, among other symptoms. If I quit eating wheat, those symptoms go away. A doctor tested me for celiac disease and told me I was just fine to eat wheat what was my silly problem? It makes me sick. I don’t know what it is in the wheat that makes me sick, but I can tell you without question that is what it is.

And the idea that we need wheat to get fiber and carbohydrates is myopic. We can eat lentils, rice, squash, root vegetables, corn, fruits, as well as some other grains.

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