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Title: ``But we're not hypochondriacs'': The changing shape of gluten-free dieting and the contested illness experience
Author: Lauren Renée Moore
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Social Science & Medicine 105 (2014) 76e83
Contents lists available at ScienceDirect
Social Science & Medicine
journal homepage: www.elsevier.com/locate/socscimed
“But we’re not hypochondriacs”: The changing shape of gluten-free
dieting and the contested illness experience
Lauren Renée Moore
University of Kansas, Department of Anthropology, 1415 Jayhawk Boulevard, Fraser 622, Lawrence, KS, USA
a r t i c l e i n f o
a b s t r a c t
Available online 22 January 2014
“Gluten free” exploded onto the American foodscape in recent years: as of January 2013, 30 percent of
U.S. adults reported reducing or eliminating gluten in their diets. How do individuals participate in the
expansion of gluten-free dieting, and what are the implications of that expansion? This article is based on
31 in-depth, semi-structured interviews conducted between May and October 2012 with gluten-free and
-restricted persons. I identify three interrelated factors contributing to the expansion of gluten-free
dieting among non-celiacs. Participants broaden the lay understanding of gluten-related disorders, undermine biomedical authority, and diagnose others. Such participant-driven change, termed selfascriptive looping, is one factor in the diet’s rapid popularization. I show how participants question
the doctorepatient relationship and increase social contestability for other dieters. My ﬁndings challenge
previous work on contested illness and suggest food intolerances may require a reconceptualization of
contested illness experience.
Ó 2014 Elsevier Ltd. All rights reserved.
Matilda and her daughter, Amy, were in a café booth when I
arrived for our interview. They sat side by side, admiring the
gluten-free cinnamon bun on the table in front of them. “This is
wonderful,” Matilda said, indicating the bun. “We never get to eat
stuff like this anymore.”
In the hour and a half we chatted over coffee, the cinnamon bun
disappeared little by little. The lack of urgency with which they ate
became a focus of conversation, evidence of Matilda’s success on a
I’ve never been able to stop eating solely by willpower at any
other time in my life. I’m not hungry. I mean, look at [the half
eaten bun]. I am so full, I can’t even imagine eating the rest of
that. Before, I would eat two of those and still be hungry. If that
were really gluten, I would have eaten the whole thing.
Going gluten free used to occur under a doctor’s supervision. The
restrictive diet was largely unknown in popular culture, and anyone
eliminating gluten earlier than a few years ago struggled to ﬁnd
suitable foods or maintain regular social activities (Lee & Newman,
2003). It recently has become a popular dietary option in the
United States. As of January 2013, 30 percent of U.S. adults report
E-mail address: LaurenRMoore@ku.edu.
0277-9536/$ e see front matter Ó 2014 Elsevier Ltd. All rights reserved.
reducing or eliminating gluten in their diets (NPD Group, 2013).
Restaurants and grocery stores are beginning to accommodate this
trend, and retail sales of gluten-free products have increased almost
28 percent in the last 10 years to become a four billion dollar market
(Packaged Facts, 2012; Sapone et al., 2012). In addition to increased
diagnoses of celiac disease (CD), the autoimmune disorder where
the diet originated, it is now used to treat a host of symptoms, and is
often pursued without medical supervision.
Despite its growing popularity, the examination of gluten free
dieters is nearly absent from social scientiﬁc scholarship. How do
individual dieters participate in the expansion of gluten-free dieting, and what are the implications of that expansion? This study
examines how these changes challenge gluten-related disorders’
(GRD) classiﬁcation as contested illnesses in social scientiﬁc literature, and how participants challenge biomedical authority
through their diet.
Gluten is a protein found in wheat, barley, and rye. Gluten
elimination originated as the only treatment for celiac disease, an
“autoimmune disease that damages villi in the small intestine,
preventing proper absorption of vitamins and minerals” (Copelton
& Valle, 2009, p.623). Until recently, medical professionals thought
celiac was rare; many were shocked when a large 2003 epidemiological study found one in 133 Americans has the disorder (Fasano
et al., 2003; O’Brien, 2011). Attention to celiac and other glutenrelated disorders has since increased dramatically.
This article, based on in-depth interviews with 31 non-celiac
gluten-free individuals, shows some of the ways these individuals
L.R. Moore / Social Science & Medicine 105 (2014) 76e83
came to adopt gluten free as a dietary goal, and identiﬁes several
factors that have contributed to the diet’s expansion beyond the
treatment of celiac disease. These interviews indicate how nonceliac dieters are engaged in expanding the possible symptoms of
a gluten-related disorder, validating and encouraging selfdiagnosis, and even undermining biomedical authority.
The looping effect (Hacking, 1995) describes how experts
continually redeﬁne categories around ever-changing populations.
This study pushes the boundaries of looping effect scholarship by
examining an undertheorized form of looping: one driven by selfdiagnosisdor what Hacking (1995, p.380) calls “self-ascription.” By
bringing greater numbers into the fold of a gluten-free lifestyle,
self-ascriptive looping becomes one factor in the popularization of
My ﬁndings show how food intolerances may require a reconceptualization of contested illness experience. For some, the
experience going gluten free reshapes their relationship to
biomedicine, and pushes them to question medical authority.
Further, the rise of non-celiac gluten free dieting has increased
social contestability for everyone on the diet. Finally, this research
provides a framework to examine the growing populations of foodintolerant people in the United States.
The rise of gluten free
Numbers of non-celiac gluten-free adherents have increased
alongside diagnoses of celiac disease. The 2011 First International
Consensus Conference on Gluten Sensitivity (Consensus Conference) addressed the dramatic increase in gluten-free dieting
around the world (Sapone et al., 2012, p.1). The panel of experts
developed a new nomenclature for these non-celiac conditions that
reﬂects the popular shift in gluten-related disorders (Robinson,
Gluten-related disorders manifest clinically in multiple ways,
including celiac disease, non-celiac gluten sensitivity (NCGS), and
wheat or gluten allergy. NCGS is the newest of these classiﬁcations.
A non-autoimmune disorder described as difﬁculty digesting
gluten, NCGS was ﬁrst formally recognized at the Consensus Conference. Though the research is in its infancy, Conference reports
show a wide variety of symptoms of NCGS, including non-intestinal
symptomsda shift away from earlier literature identifying gluten
intolerance as primarily gastrointestinal (Sapone et al., 2012).
In addition to these categories of gluten intolerance, a glutenfree diet (GFD) has become increasingly popular to treat other
disorders. Medical professionals question such uses, and Consensus
Conference reports reﬂect this skepticism (Sapone et al., 2012, p.7).
The market is ﬁlled either by people who undertake the diet as
occasional consumers (no medical necessity) or by individuals
affected by maladies that have been claimed to be affected by
gluten exposure. but for which there is no evidence of the effectiveness of the diet. [emphasis added]
I use the term “gluten-related disorder” (GRD) to describe the
range of reasons research participants followed a GFD. This term
includes many disorders implicating gluten, including medically
recognized disorders such as NCGS and non-medically recognized
ones like psoriasis and autism. This study focuses on individuals’
understandings of their bodily experiences and does not examine
whether symptom relief is due to gluten elimination or the lifestyle
changes the diet entails. Many re-learned how to grocery shop,
cook, and socialize. The term “gluten free,” therefore, speaks to the
myriad habit changes accompanying the diet that make it more
profound than single-ingredient avoidance.
Food intolerance, gluten-related disorders, and contested
Work on food intolerance has only appeared in social science
literature in the last ﬁve years (see Nelson & Ogden, 2008; Nettleton,
Woods, Burrows, & Kerr, 2009), which is a concern given rising rates
ofdand popular attention todfood allergies and intolerances. The
lay and medical worlds are at odds over food intolerance. While
recent medical literature afﬁrms the existence of some intolerances,
diagnostic ambiguity inhibits full medical legitimation (Sapone
et al., 2012). Medical studies regularly report low rates of “true”
intolerance (less than 5 percent of the adult population), while selfreported intolerance is on the rise. In 2010, approximately 25
percent of Americans reported food intolerance (Crawford, 2010),
up from 16 percent in 1996. Nelson and Ogden (2008, p.1039) note,
While the scientiﬁc community debate [sic] the etiology,
mechanism, deﬁnition, and diagnosis of food intolerance and
claim a low prevalence rate, a large number of the general public
not only believe they have a food intolerance but are changing
their eating behavior accordingly.
Food intolerance can be socially problematic because of delayed,
non-fatal, and often invisible symptoms, contrasting with food allergies’ acute, sudden reactions (Nettleton, Woods, Burrows, & Kerr,
2010). In general, medical professionals understand food allergies
as “pathologically and clinically legitimate,” while intolerances are
not (p.291). They are also contested socially. “Avoidance of foods
because of food intolerance is associated with alternative and unconventional lifestyles, fashion, and trends.. Being considered a
‘fussy eater’ is.socially problematic” (p.297).
Copelton and Valle’s (2009) work, one of the ﬁrst in the social
sciences to treat the experience of celiac disease or GFDs, aligns
celiac disease with other contested illnesses. Because contested
illnesses consist of vague symptoms with unclear origins (Barker,
2008), they are regarded as less legitimatedboth socially and
medicallydthan diseases with a clear etiology and diagnostic
framework (Counts, 2011). Sufferers have to ﬁght for a proper
diagnosis, treatment, and accommodation, leading Dumit (2006,
p.578) to describe them as “illnesses you have to ﬁght to get.”
Contested-illness sufferers have a paradoxical relationship with
doctors. They criticize doctors for their skepticism and deride
medical professionals, but rely on doctors’ expertise for diagnosis
and treatment. Unlike other contested illnesses, the non-medical
treatment of celiac disease and food intolerance allows patients
to circumvent doctors through self-directed treatment. Copelton
and Valle’s (2009, p.627) work echoes this, saying: “you don’t
need a prescription to go gluten free.”
How do medical categories change?: looping and illness
Ian Hacking’s (1995, 2007) looping effect describes how categories are continually redeﬁned as the people within them change.
It is a form of “classiﬁcatory feedback” between people and their
classiﬁcations (Hacking, 2002, p.10). Hacking’s (2004) work builds
on sociological theories of labeling, which underscore how labels
affect the labeled. The looping effect looks beyond how categories
change individuals to how a category itself changes. This contrasts
with Goffman’s (1963, p.3) work on stigma and self-labeling, which
examines “stigma management” and the internalization of an
“attribute that is deeply discrediting.”
Classiﬁcation shifts one’s experiences and behaviors, opening
up new “ways of being” for those classiﬁed. Faced with amassed
changes in the group, experts redeﬁne the label to ﬁt those within it
L.R. Moore / Social Science & Medicine 105 (2014) 76e83
(Hacking, 1995, p.368). The interaction between category and
categorized, the feedback loop reshaping both person and category,
can continue ad inﬁnitum.
One critical factor in disease looping is the addition of new
symptoms to the disease’s commonly understood illness prototype.
Bishop and Converse (1986, p.97) described illness prototypes as:
Stable representations. of the symptoms and other attributes
associated with particular disease entities. These disease prototypes are conceptual representations that serve as standards
against which to match and evaluate information about symptoms being experienced.
Illness prototypes are essential to the conceptualization of
illness and people’s perceptions of their bodies. People interpret
symptoms as problematic based on illness prototypes and ignore
symptoms without a corresponding prototype (Bishop & Converse,
1986; Kirmayer & Sartorius, 2007). Prototype changes, therefore,
must be examined in the face of rapid expansion of a diagnosis or
Like the looping effect, illness prototypes are largely created and
validated by medical professionals, and neither concept effectively
accounts for people who categorize themselves. Hacking (1995,
pp.381e2) acknowledges this limitation and predicts selfascriptive human kinds will “lead to a wholly new type of looping effect” as people “become the knowers, even if not the only
people authorized to have knowledge.”
Ecological niche and the proliferation of a diagnosis
The expansion of a category is not the only factor in the popularization of a diagnosis. To understand how a particular diagnosis
ﬂourishes at a particular time, we can look to Hacking’s (1998) work
on the environmental niche and vectors of transient mental illness.
Contemplating the sudden rise of dissociative fugue in Europe in
the late 1800s, Hacking (1998, p.13) says,
We are struck by the phenomenon that some types of mental
illness and some arrangements of symptoms are central at some
times and places and absent in others.. I argue that one fruitful
idea for understanding transient mental illness is the ecological
niche, not just social, not just medical, not just coming from the
patient, not just from the doctors, but from the concatenation of
an extraordinarily large number of diverse types of elements
which for a moment provide a stable home for certain types of
manifestations of illness.
“Vectors” are these “diverse elements” that converge to form a
niche (Hacking, 1998, p.81). In the case of fugue, “medical taxonomy,
cultural polarity, observability, and release” coalesced to form a viable
fugue diagnosis. Hacking (1998, pp.81e2) uses the word vector “as a
metaphor.. [That] has the virtue of suggesting that different kinds of
phenomena, acting in different ways, but whose resultant may be a
possible niche in which mental illness may thrive.” The metaphor of
the ecological niche is particularly important because “it reminds us
that there must be many relevant vectors in play.”
A macro-level analysis of the many vectors contributing to the
proliferation of gluten free is beyond the scope of this article;
however, the interviews in this study illuminate how gluten free
has expanded through self-ascription on an individual level. Categorical expansion has facilitated the increasing appropriateness of a
gluten-free diet for many. Self-ascriptive looping can therefore be
understood as one of many vectors contributing to the proliferation
of the diet in the United States.
These ﬁndings are based on 37 in-depth, semi-structured interviews conducted from May through October 2012 in Lawrence,
Kansas, a midwestern university town of 89,000 people. Services in
Lawrence draw dieters from hours away. Mainstream grocery
chains and two natural foods grocers carry extensive gluten-free
selections, a host of restaurants accommodate dietary restrictions,
and a well-known naturopathic practice is located in the town.
Ethical approval for the study was obtained through the Human
Subjects Committee at the University of Kansas in May 2012. Participants were located through convenience and snowball sampling
(Bernard, 2011, pp.147e9), including ﬂiers in stores and restaurants,
word-of-mouth, classiﬁed ads, and at gluten-free events. One to
two hour interviews were conducted at a site of the participant’s
choosing, most frequently a café, and transcribed verbatim. Data
were analyzed in a two-step inductive coding process: open coding
followed by the application of focused codes based on four themes
from open coding (Emerson, Fretz, & Shaw, 2011): (1) negative
experience with a doctor, (2) undermines biomedicine, (3) unexpected relief of symptoms, and (4) diagnoses others.
Of the 37 participants, 31 had not received a formal diagnosis of
celiac disease. Those 31 interviews formed the primary data, while
participants with celiac disease provided contextual data. This study
has several limitations common to qualitative research. Sampling
was largely based on self-selection due to the dispersal of gluten-free
dieters. Additionally, the population of Lawrence is not itself representative of broader populations: the city has higher-than-average
educational attainment, and median household income is approximately $6000 lower than the national average (US Census, n.d.).
Despite these limitations, the interview data presented here show
how some individuals engage in the process of broadening the
diagnosis of a gluten-related disorder. Future studies should consider
larger and more diverse populations to expand on this research.
Tables 1e3 describe participants’ demographic characteristics.
Since non-celiac gluten-free dieters are the study’s focus, I provide
On left: Gender, Median Age, and Median time gluten free of both celiac and non-celiac participants. On right: reasons for gluten-free diet among 31 non-celiac gluten free
Reason for diet among non-celiac gluten free
Median time gluten free
Self-diagnosed celiac disease
GRD diagnosed by alternative practitioner
GRD diagnosed by MD
Gluten free for other reasons: Weight loss,
Anxiety, Colitis, Autism, etc.
L.R. Moore / Social Science & Medicine 105 (2014) 76e83
a breakdown of the term in Table 1. “Non-celiac gluten free” includes self-diagnoses, diagnosis of non-celiac disorders, and a
range of other motivators. Table 3 displays the distribution of
participant household income and household size.
Lawrence is in the top 10 cities for per capita bachelor’s degree
attainment nationally, with 52.8 percent of people over age 25
possessing a bachelor’s degree or higher (US Census, n.d.). Research
participants’ education exceeded even this high ﬁgure. Eighty-two
percent of participants over age 25 had at least a bachelor’s degree,
and 36 percent had a master’s degree or higher. These numbers
exclude the three student participants between ages 18 and 24 (see
Table 2). While this may be a sampling artifact, it is in line with
research suggesting self-diagnosis of contested illnesses occurs
more frequently among those with higher education (Vierk,
Koehler, Fein, & Street, 2007).
Three themes of self-ascriptive looping
I identify three interrelated facets of self-ascriptive looping. First,
non-celiac gluten-free participants expanded the gluten-related
disorder illness prototype through unexpected symptom relief.
Second, participants undermined biomedicine by discussing negative experiences with doctors and questioning medical knowledge
about the body. Finally, some participants actively sought to diagnose gluten maladies in others. In the process, self-ascriptive
looping becomes one vector in the creation of an ecological niche
for gluten-free dieting, and its subsequent popularization.
When participants eliminated gluten to address one health
concern, they often experienced other changes in their wellbeing.
In many cases, the person was unaware of a symptom until it
Victoria, a married graduate student with two children, suspected gluten contributed to her 11-year-old son’s stomach problems. When her doctor was unhelpful, Victoria’s chiropractor
recommended gluten elimination. “Within the ﬁrst three days, I
was like ‘Oh my goodness, I have not felt this good since I don’t
know when.’” She realized her lifelong anxiety and stomach
problems were likely linked to gluten.
Over my life, I’ve had stomach problems, but I just thought “Oh,
it’s just something that’s normal.” It went away. So within three
days I was just like, “Wow. Something is up here.” My head also
just kind of cleared up. The other really interesting thing was
that, within seven days, I no longer needed to drink three cups of
tea a day. If I drank one cup, I was almost too awake. Since I’ve
been on the gluten-free diet, I haven’t needed to drink caffeine
Similarly, David realized his ﬁgure was not just his body type: “I
watched my grandfather and uncle have a pot belly. I thought, ‘Well,
that’s the pot belly I’m going to have.’ But then it went away!’” He
Marital status (left) and highest level of education (right) of 31 non-celiac gluten free
NCGF marital status
NCGF level of education
Single, no children
Single, with children
Married, no children
Married, with children
Other or Unknown
High school or GED
Annual household income (left) and household size (right) of 31 non-celiac gluten
NCGF annual household
size (# of people)
said many people would not realize they were sick until they tried
the diet. “The symptoms are so vague, if you didn’t treat them, the
person would just be considered a slow, tired person, not necessarily
a sick person.” As the illness prototype expands, more people
recognize tiredness as pathological and, ultimately, treatable.
Matilda, a stay-at-home mother in her early 40s, excitedly reported the myriad symptoms the diet relieved for her and her 6year-old daughter Amy.
The fatigue is pretty much gone. My thoughts are clearer. I used
to have a little bit of haziness in my thinking at certain times. I
used to have a lot of low blood sugar moments, and she did too.
Those are pretty much gone.
It seems a lot easier now to sit down and teach [Amy] something, or even sit down and read a book. She’s always loved to
read books, but you had to sit there and she was ﬂoating around
the room while you were reading a book, and now she’ll sit on
your lap forever.
Victoria, David, and Matilda demonstrate how relief of symptoms
can become part of a prototype. When participants felt an
improvement in their energy, skin, or concentration, how they understood those feelings changed. After going gluten free, they recast
everyday experiences as possible symptoms of a GRD. The list of
gluten-related symptoms is now nearly comprehensivedeverything from irritability to schizophrenia to diarrhea to lethargy.
The celiac prototype is the original gluten-related prototype.
“Classic” symptoms of CD are gastrointestinal; as a result, many
participants reported their doctors were skeptical of their nonclassic symptoms. Medical literature also shows many cases of CD
escape diagnosis because of atypical symptoms (Sapone et al., 2012).
Increased focus on GRDs is expanding both lay and biomedical
prototypes. However, biomedical prototype expansion at the
Consensus Conference does not account for the popular use of the
diet to treat non-classic symptoms. Almost all research participants
were gluten free before the revised symptom list was published,
and more than half were gluten free before the conference
convened. Data from top medical researchers and study participants suggest the biomedical model is simply catching up to the
public. Dr. Alessio Fasano, who co-chaired the Consensus Conference (Robinson, 2012), said
With gluten sensitivity, we’re standing at the same crossroads
that we encountered with celiac disease almost 20 years ago..
We do know that it’s a different condition from celiac disease,
which is what patients have been telling us for some time now.
Despite biomedical inclusion of non-classic symptoms for CD
and NCGS, lay and medical models still conﬂict (Sapone et al., 2012).
Because the lay model seems to be expanding more rapidly than
the biomedical one, it becomes a site for conﬂict between
L.R. Moore / Social Science & Medicine 105 (2014) 76e83
biomedical and lay knowledge. These participants’ experiences
suggest one engine of lay-driven prototype change may be unexpected symptom relief.
When participants discussed their diets, they did more than add
to the collective illness prototype. Participants’ accounts also
undermined biomedicine. This took two interrelated forms: Over
half had a negative experience with a doctor. Others, whether or
not they had a negative experience, questioned biomedical understandings of the life course, health, and diet.
Negative experiences. Some participants’ accounts demonstrate
how negative experiences reinforce the imperative to look outside
of biomedicine for healthcare.
One way this occurs is through subversion of the diagnostic
process. The power to interpret a patient’s complaints and offer a
diagnosis reinforces doctors’ knowledge, status, and authority
(Jutel, 2009, p.279). Doctors’ failures as diagnosticians create an
opportunity for patients to question their authority. Such failure is
particularly salient when patients improve rapidly through selfdiagnosis or alternative medicine.
In Michael’s case, doctors’ diagnostic failures propelled him to
self-diagnosis. He went gluten free four and a half months before
I got to a point when I got very, very sick. I had to go to the ER.
The medication they were giving me. It was like they were
[taking] shots in the dark.. The medication they gave me and
the recommendations they kept giving me were making it
worse.. So I decided to take matters into my own hands. The
doctor said that it could be many things, but he never talked
about gluten. It was kind of my idea that it was an option.
Michael was one of many participants whose doctors were
unable to help them. He suspected gluten and tried a gluten-free
diet; he felt better immediately. A nutritionist’s recommendations
for weight gain made him sicker. “It was frustrating because you
were feeling better and you follow a doctor’s advice and you get
worse and you start wondering, ‘What the hell is going on?’” For
Michael and many others, doctors’ perceived lack of nutritional
training, and their failure to connect patients’ symptoms to food
become a forceful argument for the value of self-diagnosis and
Diagnosis is critical for social acceptance and accommodation.
Jutel (2009, p.288) described diagnosis as “the fulcrum of the
medical narrative,” which confers truth and social legitimacy on a
patient. In the case of many food intolerances, however, the unclear
etiology and symptomology make diagnosis difﬁcult, anddas in
the case of glutendfood intolerances are not widely accepted as
legitimate medical concerns. Medical experts, suggesting the
public’s susceptibility to trends, are largely dismissive of the diet’s
popularity. “‘Allergy’ is currently all the rage, and it is well possible
that many individuals are on a GFD for no sound medical reasons”
(Sapone et al., 2012, p.10). As a result, many with food intolerances
feel marginalized socially and by healthcare professionals
(Nettleton et al., 2010).
This research suggests an alternative approach for some. Participants claimed medical legitimacy on their own; they discredited
doctors for their failure to correctly diagnose the problem. Few
participants reported social stigma for lack of an “ofﬁcial” diagnosis.
Many “take charge of knowledge about themselves” (Hacking,
1995, p.381) by using biomedical language and faulting medical
professionals for not keeping pace with lay knowledge of gluten’s
harm “Most of the mainstream allergists.you see articles all the
time that say, ‘there’s no need for people who aren’t celiacs to go on
a gluten-free diet’” said one participant. Mockingly, she added, “It’s
whatever they learned in school, they won’t think any different.”
By displacing biomedical diagnosis as the legitimator of their
illness, these participants challenge the boundaries of valid
expertise. They ﬁnd fault with doctors’ failure to diagnose and deny
the marginalization traditionally associated with lack of a proper
diagnosis. In doing so, study participants help change the meaning
of GRDs, moving them from a narrow biomedical diagnosis to a
categoryda diagnosisdover which participants have ownership.
Questioning biomedicine. In addition to undermining their doctor’s
expertise, some participants questioned the medical narrative of
the “normal” body or life course. Christy, a 46-year old woman with
nearly seven years gluten free, discussed her 70-year-old mother’s
dramatic improvement on the diet.
My mom and I both have had debilitating arthritis. Here she is,
in her late 70s, improving. You just don’t see that. You see people
who are in pain, and misery, and are going downhill, and they
think: “It’s aging, this is what happens when you age.” Well, it’s
a symptom. It doesn’t have to happen. It can get better.
Modern medicine is miraculous in what it can do in various
stages of people’s lives.but in the general huge gray area of
everyday misery for almost everyone you know, they’re convinceddso the patients are convincedd“Well, you’re getting
older.” That’s what they say. That, or “It runs in my family.” Well,
what runs in my family is caused by gluten intolerance.
Through such comments, Christy and other participants move
beyond a critique of their doctors’ expertise. They challenge underlying assumptions about the life course and the medical
approach to the body.
Few participants rejected biomedicine entirely. Rather, they
assigned doctors a diminished role in disease intervention and wellness, advocating instead for greater reliance on alternative practitioners and dietary change. Speaking of “diet and lifestyle diseases,”
“obesity,” and the “standard American diet,” participants particularly
emphasized the uselessness of biomedicine for treating what ails
Americans. “Modern medicine is really good at crisis intervention,”
JoAnn said, but “They don’t do well with chronic issues.”
I think probably most of what Americans are facing, at this point,
is diet and lifestyle related. And so, for all of that, I think modern
medicine is not so good. I’m skeptical of it. And I’m especially
skeptical because I see them steer people wrong so much, and try
and push them towards pills and interventions that have side
effects and risks, when often less invasive approaches [will work].
Participants perceived biomedical treatments as masking, rather
than curing, illness. Nina, a 51-year-old woman who eschews
Western medicine and teaches others to do the same, lamented,
I knew lots of people who went to the doctor and the doctor
didn’t know what was wrong, or said or treated the wrong thing.
It just ﬂipped me out. The amount of money, time, frustration, ill
repair. Why would anyone choose this path?. They are so
clouded by their signs and symptoms because they don’t know if
it’s the medication causing the problem, or food, or disease, or
Like many participants, Nina was skeptical of the close relationship between American medical practice and the pharmaceutical industry. Doctors’ perceived hostility toward dietary or other
L.R. Moore / Social Science & Medicine 105 (2014) 76e83
alternative treatments limited their ability to best serve their patients. Dietary treatments are ignored because they do not lead to
commercial proﬁt for “Big Pharma.” Nina continued,
A lot of people trust the FDA and the Western medical model. So
anything that isn’t backed by the FDA.people are [skeptical].
I’m ﬁnding more amazing results with things that aren’t backed
by the FDA or the Western medical model, that are more
effective than anything they’ve touted.
Heather, a 44-year-old woman, ascribed the rise in gluten free to
increased individual awareness in the face of medical disinterest.
You can’t take medicine for gluten intolerance. You just have to
change your eating. Gluten can cause diabetes, which you take
medicine for; high blood pressure, which you take medicine for;
cancer, they treat cancer. And so, they can treat all of that stuff with
medicine, which is money. Where, they can’t treat gluten intolerance, so it’s no money for nobody except for the food industry.
Similarly, Lucille, a woman in her ﬁfties, had a hard time ﬁnding
a doctor who would work with her in her dietary transformation,
because “they just want to give you drugs.”
Jill, a 44-year-old nurse, endorsed a “hand-in-hand” model for
Western and alternative medicine, because pharmaceutical-driven
biomedicine is insufﬁcient. “Coming up with a new medication
every two minutes,” she said, “doesn’t help health.”
For many of these participants, critiques of biomedicine arosedor were greatly magniﬁed bydtheir experience eliminating
gluten. The unexpected relief of symptoms fostered realization of
the potential power of dietary change. Jill exempliﬁed this, saying
she only “came to [her criticism of Western medicine] through my
own experience.” She believes patients must look outside of their
doctor’s ofﬁce to identify the root causes of illness. Most physicians,
she says, are hindered by a compartmentalized view of the body
and deep ties to the pharmaceutical industry. Jill now promotes diet
and lifestyle changes for a wide range of diseases, and has sent over
25 people to the alternative practitioner who diagnosed her gluten
Christy’s fervent promotion of a gluten-free diet includes unexpected symptom-relief and criticism of the “normal” life course.
While diagnosing others, she directs them away from biomedicine
and advocates an extensive illness prototype. She tells friends, “We
can either talk for three hours, or you can go home and write a list
of all the symptoms you have and your parents have, and search for
those symptoms plus gluten, and see what comes up.” When faced
with medical crises, the solution should be as easy as “picking this
cereal instead of that cereal; this pasta instead of that pasta. ‘Should
I see a therapist, should I be on medication?’ ‘No,’” Christy says.
“Just don’t eat the damn cookie.”
Like Christy, JoAnn eliminated gluten with her family. She reports many have eliminated gluten on her recommendation. She
presents annually about the dangers of gluten at a national conference with an audience of 700.
When I get there.people come up to me and say, “I went to
your talk last year, and you won’t believe what happened to
me!”. And really what I ﬁnd is that many people, once they try
a gluten-free diet, they don’t see it as deprivation, they see it as a
huge blessing. Their quality of life improved so much.
In her talk, JoAnn suggests everyone should be conscious about
minimizing gluten consumption. Few people can eat it without
consequence; most are gluten intolerant, whether they know it or
not. JoAnn’s public promotion of gluten free includes a selfpublished cookbook and a website, featuring testimonies about
radical health improvements following gluten elimination.
These participants, like others, undermine biomedicine and
expand the GRD prototype. Unlike other participants, however,
they actively work to spread the diet. Their tenacity helps explain
one way the diet could spread rapidly to new arenas. Driven by a
desire to affect positive change in the wider public, these glutenfree promoters speak at conferences, write books and blogs, and
intervene in strangers’ conversations. Through them, the promises
of a gluten-free diet can be heard far and wide.
Three linked aspects of self-ascription
Some gluten-free adherents persistently diagnose others with
GRDs. Numerically, this factor represented only one-third of
research participants. The small percentage, however, is counterbalanced by these participants’ persistent proselytism. All participants explained or suggested the diet to others, particularly in
situations where they were likely to encounter food. Diagnosing
others goes beyond discussing the diet. These participants seek
avenues to actively promote it.
Christy discussed at length the many people she had
approached about the diet; she believes gluten disorders are more
prevalent than commonly thought.
I’m starting to not be able to go out in public. I see little kids with
bright red patches on their cheeks, or dark circles, or. see a
friend whose kids missed 40 days of school last year, and he
doesn’t believe it’s wheat.
The mainstream articles still all say the same thing, [one in 133
have celiac]. Call it what you want: gluten sensitivity, gluten
intolerance, celiac.I think out of 133 people, maybe 120 of
them should not eat wheat.
She described neighbors to whom she tenaciously prescribed
the diet and emphasized their success as part of her narrative.
Much of Hacking’s (1995) work on self-ascription focuses on
association with a self-help group or collectivity. By contrast, the
data presented in this article shows how self-ascriptive looping
occurs at an individual, rather than group, level. The themes I
identiﬁed interact to expand gluten free beyond its biomedical
roots in celiac disease. Together, they constitute a form of lay-driven
looping with consequences for the doctorepatient relationship and
the reception of gluten free in society.
The looping effect alone does not address the popularization or
diffusion of an illness. However, this research suggests that selfascriptive looping results in a greatly expanded illness prototype,
and that gluten-free individuals promote a broadened illness prototype and self-diagnosis to their friends and families. Some work
to promote the diet further. As a result, self-ascriptive looping can
function as one vector in the diet’s growing popularity.
We can look to several other possible vectors of gluten free’s
diffusion. The rise in celiac disease as a valid autoimmune disorder
provides the language and “medical taxonomy” to understand gluten
as problematic (Hacking, 1998, p.81). Marketing and popular publications increase the diet’s visibility (Davis, 2011). Dietary control of
illness aligns easily with the ideology of personal responsibility in
the United States (Brandt, 1990; Minkler, 1999). Finally, complementary and alternative medicines, which often prioritize dietary
change, are becoming more popular (Su & Li, 2011).
L.R. Moore / Social Science & Medicine 105 (2014) 76e83
Analysis of these possible vectors would require a macro-level
approach beyond the scope of this article, and would be an excellent topic for future research. My data suggest that self-ascriptive
looping is an individual-level vector for the rise in gluten-free
Self-ascription and contested illness
Self-ascriptive looping is at work in the lives of these participants. The resultant changes in the GFD may challenge conceptions
of celiac disease and food intolerance as contested illnesses. There
are several ways GRDs conform to contested illness literature, as
well as two consequences of gluten free’s self-ascriptive looping
that differentiate it from previous work.
Copelton and Valle (2009) identify celiac disease as a contested
illness, particularly because patients struggle for a diagnosis. Other
gluten-related disorders also ﬁt key characteristics of contested
illness (Swoboda, 2006). Like chronic fatigue syndrome (HortonSalway, 2004) and ﬁbromyalgia (Barker, 2008), GRDs have a
controversial status as a legitimate illness (Ray, 2010), an ambiguous etiology (Nelson & Ogden, 2008), and disputed status in
medical and cultural classiﬁcation (Knibb et al., 2000).
This study shows several possible disjunctures between GRDs
and other contested illnesses. Self-ascriptive looping among
gluten-free participants has two ramiﬁcations. First, increased
popularity of the GFD without medical backing decreased social
legitimacy. Second, participants use personal experiences to question biomedical practice rather than appealing for greater medical
legitimacy. These differences warrant increased scholarly attention
to the experience of GRDs as a particular form of contested illness.
Specter of the fad diet
Lay-driven looping of GRDs has implications for public perception of the disease. Rather than moving toward more social acceptance, self-diagnosed specialty diets attract backlash. This may be
related to the important role of food as a critical marker of identity
(Nettleton et al., 2010). Food avoidancedeven when medically
necessarydcasts a person as picky, self-absorbed, or on the political
fringe. The Internet is rife with backlash against gluten free (see, for
example, Campbell, 2012).
Celiac sufferersdboth research participants and in the blogospheredlament that the diet’s fad status has “robbed them of their
credibility” (Myers, 2012). Several participants, rather than use the
term “gluten” in a restaurant, tell servers they are allergic to wheat.
Melissa, who was diagnosed with celiac disease in 2009, said,
“Basically I just say I’m deathly allergic to wheat, horrible things
happen to me if I eat it. I felt like I was taken more seriously if I used
‘I am deathly allergic.’”
Self-ascriptive looping results in a particular set of challenges for
GRDs. One participant, David, identiﬁed the broadened illness
prototype as part of the problem. “The gluten symptom picture ﬁts
with all these other symptom pictures in a way that makes us seem
like we’re another bunch of hypochondriacs. But we’re not hypochondriacs.” Without the support of experts who validate categorical boundaries, GRDs are a nebulous, contested category. As a
result, gluten-free adherentsdincluding diagnosed celiacsdmust
now confront media and public skepticism of the diet.
Looping to a changed doctorepatient relationship
Unlike other contested illnesses, medical professionals are not
the only path to legitimacy for GRD sufferers. For many medical
disorders, biomedical experts are the gatekeepers to appropriate
treatment (Dumit, 2006). For GRDs and other dietary illnesses,
however, medical legitimacy is less urgent. Food intolerance leads
to lifestyle changes, allowing patients to “claim, name, and treat
[themselves] as food intolerant” without the support of a doctor
(Nelson & Ogden, 2008, p.1044).
Laypeople have expressed skepticism of expert dietary advice
for decades (Lupton, 2000, p.209), and scholars have long
acknowledged that, “concern with health has not always produced
faith in doctors.. Intensiﬁed religious feeling does not always
beneﬁt established churches; similarly, a therapeutic awakening
may lead to a proliferation of health sects rather than deference to
professional authority” (Starr, 1982, p.7). For participants in this
study, food intolerances like GRDs may be one such “therapeutic
awakening,” creating a bridge to transfer existing skepticism of
dietary advice to a wider range of medical encounters. Not only did
they challenge doctors’ dietary advice, they called into question the
biomedical process and its perspective on the body.
It is unlikely these patients will abandon their doctors. Studies
show that patients use complementary and alternative medicine
(CAM) alongside biomedicine (Segar, 2012). However, research
participants minimized conventional medical practitioners’ roles in
their lives. Their experience with the gluten-free diet encouraged
them to question doctors’ authority over other areas of their health.
The success of gluten free to treat a wide range of disorders may
encourage some to rethink biomedicine’s role in other chronic illnesses beyond GRDs. These ﬁndings support calls to understand
how “the diminished importance of medical and scientiﬁc experts”
might impact experiences of health (Counts, 2011, pp.1e2).
Food intolerances are on the rise in the United States and other
Western nations, with recent studies suggesting one-fourth the
population of industrialized countries perceive sensitivity (Zopf,
Hahn, Raithel, Baenkler, & Silbermann, 2009). My study suggests
that scholars should question how the experience of food intolerance
might reshape some aspects of the doctorepatient relationship and
challenge the legitimacy of the biomedical approach to the body.
Over the past several decades, social scientists have described
shifts in the doctorepatient relationship and how patient access to
information, alternative therapies, and lawsuits have challenged
doctors’ authority (Jutel, 2009). The experiences of non-celiac
gluten-free dieters may signal another such shift that merits
scholarly attention. Food intolerances like gluten-related disorders
occupy a particular site in the doctorepatient relationship because
they do not require diagnosis to precede treatment. Individuals can
avoid foods without a diagnosis, yet they also ﬁt within biomedical
diagnostic categories. What is critical is how the experience of
gluten intolerance seems to change some participants’ views of
biomedicine and may have the potential to reshape the doctore
patient relationship beyond the realm of diet.
Furthermore, scholars should examine food intolerance as a
distinct form of contested illness experience. The case of gluten free
suggests that food intolerances can be a form of contested illness
that is an imperfect ﬁt with previous models. On one hand, we see
similar tensions with medical professionals and the use of lay information networks. On the other, study participants reframe
diagnostic legitimacy by undermining biomedicine and advocating
self-diagnosis. Increasing medical legitimacy corresponds to social
acceptance; in the case of gluten free, the specter of the fad diet has
only increased social contestability. This research provides a
framework to examine the growing populations of food-intolerant
people in the United States.
Examining GRDs as a case of self-ascriptive looping helps
explain how the category of gluten free expanded over the last
decade. With this in mind, scholars should attend to how glutenrelated disorders have changed, and what form they will take in
L.R. Moore / Social Science & Medicine 105 (2014) 76e83
Thanks to Alexander J. Myers, Sandra Gray, Don Stull, William
Staples, and three anonymous reviewers who contributed their
time and insight to the improvement of this manuscript, and to the
participants in and around Lawrence, KS who made this research
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