2. TI IIS QUOTE from a professor
at the Albert Einstein College
of Medicinesums up the reason
myths persist in the face of
evidence.
"Let's face it," he said. "Myths
and misinformation so are so
much more seductive than the
truth."
When Gluten-Free Living ad-
dressed myths about the gluten-
free diet in the past, wemainly
focused on incorrect information
about specific ingredients and
categories of food. Over the years
most of the questions we received
from readers were about things
like maltodextrin and modified
food starch. Were these kindsof
ingredients safe on the gluten-free
diet? Was it true there wasgluten
in the glue on postage stamps?
Was flour added to spices? Did
vinegar contain gluten? Is salad
dressing safe?
We often found misinforma-
tion about some pretty basic
things regarding the gluten-free
diet being circulated on the
Internet.
Long after the facts about
postage stamps, vinegar, salad
dressing and spices were laid out,
these items were still causing con-
troversy online. (Postage stamp
glue does not contain gluten, nor
does distilled vinegar. Since most
vinegar is safe—malt vinegar
made from barley is the excep-
tion—so is most salad dressing as
long as it docs not have another
gluten-containing ingredient such
as wheat-based soy sauce. Flour
is not used to keep spices flowing,
and most are gluten free.)
But in the past year, new kinds
of myths about being gluten free
have taken root.
It seems the whole continent
is suddenly interested in whether
you can lose weight on the gluten-
free diet. Others are arguing that
gluten is bad for everyone, that
there is more gluten in modern
wheat, and that "regular" wheat
has been replaced by agenetically
modified version.
As these topics started to draw
mainstream media attention,the
gluten-free diet also started to
draw sarcasm at best and sneering
at worst.
"Gluten-free eating has become
a staple of satire. It's shorthand
for solipsism, for a certain kind of
over-privileged self-care," Heather
Abel wrote in a recent blog for
Slate, summing up negative feel-
ings about those on the gluten-
free diet.
In addition to Slate, the gluten-
free diet has been scrutinized
by everyone from CNN to The
Huffington Post, The New Yorker,
Buzzfeed, Time and Food Naviga-
tor. Sometimes the reporting was
correct, raising important ques-
tions about diet and diagnosis.
Other times it repeated dubious
information.
Here's a look at some of the
new myths about the gluten-free
diet.
WHGHTLOK
Our readers probably know better
than most that the gluten-free diet
is not a weight loss plan. It was
never conceived as one. Agluten-
free diet is designed to prevent
those who have celiac disease and
gluten sensitivity from suffering
the harmful effects that gluten
from wheat, barley and rye causes
in their bodies.
More than 20 years ago, I
became interested in the gluten-
free diet because of my daughter.
When she was a toddler she
suddenly became very sick and
lost so much weight in a few short
weeks that she looked like the
starving children from Biafra in
the news at the time. When she
was diagnosed with celiac disease
and went on the gluten-free diet,
her subsequent weight gain was
something she needed to survive.
' We welcomed it as a sign of
restored health.
Many people, though not all,
share that experience. Undiag-
nosed celiac disease can cause
weight loss and the gluten-free
diet, by restoring the body's ability
to absorb nutrients from food,
can cause weight gain. Celiac
disease patients who had always
been slim prior to diagnosis but
did not suffer dramatic weight
loss, find that they, too, gain
weight when they go gluten free.
Sometimes it'shard to slow that
weight gain down, and so it's not
always welcome.
Meanwhile we contend with
celebrities, friends, family and
even strangers who are convinced
that gluten free is the latest South
Beach or Atkins diet, the quickest,
surest way to drop pounds. Alice
Bast, founder and president of the
National Foundation for Celiac
Awareness, recently suggested
that the "diet" connection might
be what leads to misconceptions
about celiac disease and gluten
sensitivity. She wondered if these
conditions might be taken more
seriously if the treatment was
called "the gluten-free prescrip-
tion" instead of "the gluten-free
diet."
When we asked our website
visitors about the myths that
bother them the most, the one
about weight loss was at the top
of the list. About 50 percent said
it was the most troubling of three
choices.
Can you lose weight on a
gluten-free diet? Certainly. If you
eat gluten-free foods that are high
in nutrientsand low in fat and
calories in small enough quanti-
ties and you exercise enough to
burn off more calories than you
put in, then you can lose weight
on the gluten-freediet. But the
absence of gluten alone should
not be given credit for the weight
loss. If you don't haveceliac
disease or gluten sensitivity,you
can also lose weight if you follow
this kind of eatingplan with no
regard for gluten whatsoever.
Maybe some people get a boost
in motivationor reinforcement
of their commitment to stay away
from high-caloriefoods such as
bread, cookies, cakes, pizza, pasta
and more if they put themselves
on a gluten-free diet.
But if they substitute gluten-
free versions of these foods, we all
know weight loss is not in dieir
future, and vitamin and mineral
deficiencies will be if they are not
careful about what they eat.
A gluten-free diet that relies
on fresh, natural foods such as
fruits and vegetables, lean protein
and gluten-free whole grains
and limits processed foods is
healthy and should be the goal of
everyone who is gluten free. But
if you do not have celiac or gluten
sensitivity, you can achieve these
same goals without having to be
gluten free.
GGMCTllRM!
The idea that gluten is bad for
everyone is another popular
myth. This idea has gotten a lot
of traction from the books Wheat
Belly and Grain Brain: The Sur-
prising Truth about Wheat, Carbs,
and Sugar—Your Brains Silent
Killers. But experts who have been
researching celiac disease and
gluten sensitivity for years dispute
this notion.
In his recent book, Gluten Free-
dom Alessio Fasano, M.D., head
of the Center for Celiac Research
and Treatment at MassGeneral
Hospital for Children in Boston,
wrote that celiac disease research
led him to take a close look at the
way gluten protein is handled in
our digestive system. He found
that gluten is the only protein that
can't be completely dismanded.
As undigested protein sits in
the small intestine, our bodies
unleash an immune response
similar to the one triggered by
bacteria. Fasano says this happens
in everyone, not just those who
have celiac disease or other gluten
disorders.
But he writes that it's a mistake
to interpret this fact as proof that
gluten is toxic to everyone, and
he laments that his discoveries
have played a part in the popular
myth that everyone has to be on a
gluten-free diet.
He says the body winsdaily
battles with bacteria and does the
www.glutenfreeliving.com 25
3. same with gluten. "Only a minor-
ity of us will lose this battle. These
are the genetically susceptible
individuals who will develop
gluten-related disorders," Fasano
says.
Stefano Guandalini, M.D.,
founder and medical director of
the Universityof Chicago Celiac
Disease Center, agrees, noting
that the undigested protein pieces
are simply eliminated by most
people and are not the cause for
concern.
Daniel Leffler, M.D., an as-
sistant professor of medicine at
Harvard Medical School who
writes a regular medical column
for Gluten-Free Living, says there
is no there is no significant benefit
from avoiding gluten if you don't
have celiac disease or gluten
sensitivity.
This isjust a sampling of celiac
disease experts who have been
studying gluten and its effect
on the body who say there is no
evidence to support the idea that
gluten is bad for everyone.
For most people, glutenis
neither bad nor good. Those who
choose the diet because they
find it makes them feel better or
because a family member has
celiac disease or glutensensitiv-
ity and they want their home to
be a gluten-free zone, can do so
without harm as long they make
healthy food choices. Done right
the gluten-free diet won't hurt
you. But this choice should be
made based on facts, not myths.
THENEEDEORTECTING
Another worry is that when
people think gluten is bad for
everyone, they go on the gluten-
free diet without being tested
for celiac disease. Celiac disease
experts strongly advise everyone
to be tested first. In particular
testing should be a priority for
anyone who has symptoms of
celiac disease or has a family
member who has celiac disease.
And it's a good idea even if
you don't have any symptoms
because we now know that some
people show no outward signs
of celiac disease even if damage
is being done internally.
Once you are on the gluten-
free diet, it's very difficult to
tell if you have celiac disease
because tests won't pick up
antibodies unless you are eating
gluten. A celiac disease diag-
nosis matters to you personally
because it can motivate you to
stick to the gluten-free diet.
It matters to the celiac disease
community at large because
we are trying to decrease the
number of undiagnosed cases.
Right now about 85 percent of
those who have celiac disease
don't know it. Some are undiag-
nosed because they don't have
symptoms. For others, their
symptoms have led to diagnosis
ofthe wrong disease.
If we can start nudging up the
percentage of diagnosed celiac
disease cases, we won't have to
worry that when thegluten-free
fad fades , celiac disease and
gluten sensitivity will be forgot-
ten again.
In the post year,
new hinds of
myths about being
glutenfree hove
tohen root.
1900s. He compared data and
found that average gluten content
is the same range, roughly 10 to
15 percent.
At the International Celiac
Disease Symposium in 2013,
Kasarda also reported facts about
wheat-based foods consumed
by Americans. His data refuted
claims that one of the reasons we
have more problems with wheat
is its growing presence in food.
Kasarda found that the amount
of wheat eaten per person per
year peaked at 220 pounds in
1900 and stood at 134 pounds
in 2008.
And although GMOs, geneti-
cally modified ingredients, do
affect some of the ingredients
used in gluten-freefoods such as
corn, genetically modified wheat
has not made its way into the
food supply so that's not to blame
for an increase in celiac disease
or gluten sensitivity either.
MOREGLUTENI«AT!
You might also have heard that
the reason celiac disease and
gluten sensitivity are increas-
ing is that there is more gluten
in modern wheat. I'm not sure
where that story got started, but
I do know where it ends.
Donald Kasarda, Ph.D., a
respected cereal chemist who re
tired from the U.S.Department
of Agriculture(USDA), decided
to research whether today's
wheat really does contain more
gluten than wheat from the early
HOWMMIMPACTYOURUFE
But what real impact do these
myths have on your gluten-free
life? Why should you care about
them as much as you mightabout
myths such as die one that there is
gluten in coffee? (For the record,
Teecino is the only brand of coffee
we've found made with a gluten-
containing grain, in this case
barley. You do have to watch for
ingredients added to coffee-based
! drinks. For example the Cafe
Escapes French Vanilla Cafe-au-
; Lait K-Cup contains wheat. But
I most plain and flavored coffee is
! gluten free.)
: When the general public be-
! lieves incorrect information about
gluten and the gluten-free diet, it
i causes confusion and lack of seri-
i ous regard for the very real needs
: of someone who has celiac disease
! or glutensensitivity.
I I read a quote that sums up the
dangers well: "Fad and fantasy
I trivializeand endanger die medi-
; cally necessary side of the gluten-
free diet."
Take this scenario: A diner who
i has gone gluten free to lose weight
: goes to a restaurant and tells his
server he can't have croutons on
! his salad.. Then, pleased with
i his restraint during dinner, he
; gives into the temptationhave a
few bites of gluten-filled cake for
: dessert. This creates the impres-
! sion that the gluten-freediet is
| nonsensical and that those who
follow it don't need to be taken
I seriously.
Then when you go to the same
: restaurant seeking a trulygluten-
; free meal and ask about cross-
; contamination, there's a real risk
; your concerns won't be addressed.
In a blog on The Huffington
: Post, Chef Marc Vetri described
I just this kind of scenario and how
; confounding it is. A customer
; in his restaurant refused to eat
risotto, mistakenlybelieving the
I rice dish could not be gluten free,
I only to finish her meal with a cold
beer.
A lot of people have worked for
; a very long time and in minute
; detail to make the restaurant in-
i dustry understand the gluten-free
needs of those who have celiac
disease. And that work, whichis
: far from complete, can be quickly
I undone by a string of diners who
i think ofthe gluten-free diet as
: something you can veer on and
off of depending on whim and
will power.
! We've seen how this plays out
i everywhere from South Park to
: The New Yorker. In an episode
of the Comedy Central cartoon
:
entitled Gluten Free Ebola, South
Park became the first completely
: gluten-free town in the nation,
i complete with quarantine, forced
26 Gluten-Free Living March/April 2015
4. purging of gluten-containing
pantries and razing of dangerous
wheatfields.
In a New Yorker story on the
gluten-free diet a highly respect-
ed chef said that to him the words
"gluten free" arc like wavinga red
flag in front of a bull.
Those on die gluten-free diet
are often depicted as whiny,
self-absorbed, self-important and
generally annoying. It's a popular
mainstream image, but when it
comes to those with celiac disease,
it is about as accurate as a photo-
shopped celebrity picture.
Plain and simple, thegluten-
free diet is medicine, for now the
only one available to those who
really suffer the consequences of
consuming wheat, barley or rye.
Many follow the diet with a low
profile and have subtle ways of
making sure the food they eat
is safe. When they eat out, they
are gracious customers who are
known to leave generous tips in
return for caring service.
And it's not that those who
have celiac disease take them-
selves so seriously they can't take
a joke. Most got the fact that the
South Park episode was satire.
And sometimes the parodies can
be laugh-out-loud funny, like the
YouTube video based on the song
Royals by Lorde, which addresses
the frustrationsof being gluten
free. It got nearly 200,000 views.
But some things written about
being gluten free are demeaning,
angry and harmful.
There's this from FoodSpin:
"'Gluten-free' has become a
kind of health-mindfulness merit
badge, an artifact of our Puritani-
cal conflationof self-deprivation
and virtue.... It is identity politics
in the bread aisle—with a class-
distinction edge, since gluten-free
[food] costs much more than
the regular stuff and generally
can only be found in the more
exclusive parts of town. 'Gluten-
free' is a signifier—I have the time
and money and grim determina-
tion to purchase mywellness— r
and, concomitantly, Therefore, I
deserve it."
In the science section of the
Time magazine website, you'll
find an article with the headline,
Eat More Gluten: The Diet Fad
Must Die.
mmmmmiMost stories about the gluten-free
diet do acknowledge the serious-
ness of celiacdisease, but gluten
sensitivity gets pushed around
by media bullies. Doubt dogs
gluten sensitivity because there
is no definitive way to diagnose
the condition, and many people
decide for themselves that they
are gluten sensitive.
Not long ago even medical
experts thought gluten sensitivity
was a myth. Doctors who tested
symptomatic people for celiac
disease and got negative results
from blood tests and biopsies
either didn't believe anything was
really wrong with the patient or
diagnosed them with another
condition or series of other condi-
tions.
Researchers finally took an-
other look at gluten sensitivity in
response to outcry from patients
who struggled with symptoms
until they went on agluten-free
diet even without a celiac disease
diagnosis. As a result the condi-
tion was officially recognized as
a legitimategluten-free disorder.
The number of those who are
thought to have glutensensitivity
exceeds even estimates of those
who have undiagnosed celiac
disease. Excitingwork isgoing
on to identify a way to definitely
diagnose gluten sensitivity. It's not
here yet, but there's a good chance
it will be one day.
GLUTENINGlUTEN-fREEFOOD
Recently we moved into an
exciting new era with imple-
mentation of U.S. Food and
Drug Administration (FDA)
rules for use of a gluten-free
label on food.
One of the biggest benefits of
the new rules is the impact they
have on cross-contamination
of foods labeled gluten free.
We can finally deal with the
facts on this topic instead of
misinformation. Previously
companies only had to account
for gluten-containing ingredi-
ents, not the unintended gluten
that might be picked up as
ingredients move from farm to
factory to table. Now food that's
labeled gluten free has to have
less than 20 parts per million
of gluten, period, including any
that comes from cross-contam-
ination.
If a company makes a
product labeled gluten free in a
facility that also produces foods
that do contain gluten, cross-
contamination will have to be
dealt with in a way that assures
the FDA standard is met.
All food companies, in-
cluding those with dedicated
gluten-free manufacturing
facilities, have to make sure any
ingredients that come into their
plant are not cross-contaminat-
ed to a level that would result
in the final product containing
20 ppm of gluten or more.
This brings up a misconcep-
tion, if not a full-blown myth,
about the gluten-free standard.
The 20 ppm cut off does not
mean that the food contains
20 ppm of gluten. It means
it can contain somewhere
between a theoretical zero and
19 ppm. Zero is theoretical
because there is no test that can
determine whether any product
contains absolutely no gluten
and because zero gluten is a
scientific impossibility.
A product with agluten-free
label could contain 5 ppm or
10 ppm. Most food companies
don't want to get to close to the
20 ppm cutoff because a small
fluctuation could then send
them over the limit. A recent
study by the FDA determined
that 98 percent of gluten-free
foods tested did meet the
standard.
A recent Consumer Reports
story about the gluten-free diet
concluded that even if you are
eating gluten-free products you
arc not really gluten free. The
story pointed to a European
Journal of Clinical Nutrition
study that looked at 158 food
products labeled gluten tree
over three years. That study
found that about 5 percent
didn't meet the FDA's limit of
less than 20 ppm when tested
before the FDA's rule went into
effect last summer.
The FDA's own study includ-
ed 275 foods in 12 categories
and found only three that had
more than 20 ppm of gluten.
This study was not mentioned
by Consumer Reports. In gen-
eral it seems most gluten-free
foods are meeting or exceeding
the standard. When the FDA
tested the products in its study
to a level of 5 ppm or less, only
10 turned out to be positive.
Myths and misconceptions can
complicate your gluten-free life.
The consequences can extend
from the way others view the im-
portance of maintaining a gluten-
free diet to your own personal
decisions about the food you eat,
the places you go, and the way
you interact with others.
From the beginning, Gluten-
Free Living has taken the position
that facts about the diet are
critically important,and it's our
job to dispel misconceptions
and myths. The nature of these
myths may have changed, but
our role in setting them straight
has not. GF
Amy Ralner is the editor ofGluten-
Free Living.
www.glutenfreeliving.com 27
