L OOS E CONNECTIONS

Your Magazine About Living With EDS Spring 2013

EDNF 2013 Learning Conference Information..................................................................................... 2
Welcome from New Chair of the Professional Advisory Network Heidi A Collins, MD......................... 3
Maryland and D.C. EDS Support Groups Event Laura Grimes-Hartley ............................................... 4
Unpredictable (Extended Metaphor Poem) Isabel Libby ....................................................................... 6
A Moment in Time Joanne Ryshpan-Harris ....................................................................................... 7
Poem Mary-Kate Wells & Stephanie Spitz ........................................................................................ 8
Art (Since I Have EDS...) Locklyn Eschauzier ................................................................................. 9
My Simple Lesson from This Ehlers-Danlos & Chiari Life Alyson Salzedo-Benison .......................... 10
What Is It about Gluten, Anyway? Amy Bianco ............................................................................... 11
The Happy Secret to Better Work Shawn Achor ................................................................................ 13
Sorghum Is a New Safe Grain For People with Celiac Disease ............................................................ 17
Publisher's Index ............................................................................................................................ 18
SPRING 2013
PAGE 2
2013 Learning Conference
Rhode Island Convention Center/ e Omni Providence
Providence, Rhode Island August 1-3
Early regisration is open!
To register, visit the registration site.
2013 Conference General Information
Things to Do in Providence
Providence Travel Information: information about the airports, airlines, train
service, and mass transit options
2013 Conference Sponsors
Speaker Biographies
Speaker List
Session Handouts
Frequently Asked Questions
Physician Consults
Scholarship Donation
Donation of Items to Auction or Store
Scholarship Application
SPRING 2013
PAGE 3
EDNF is happy to announce the new chair of our
Professional Advisory Network, Dr. Heidi Collins.
I
AM truly honored to serve as chair of
the Ehlers-Danlos National Foundations
Professional Advisory Network.
I am a physician specializing in Physical Med-
icine and Rehabilitation. In addition to serving
the broad population typically encountered
in my specialty who most often suffer from
disabling musculoskeletal, neurologic, or
rheumatologic conditions, I care directly for
EDS patients, and I take particular interest
in the extra-articular manifestations of EDS-
related conditions.
However, my motivation to make a difference
for persons with EDS arises only in part from
my professional side. I have Ehlers-Danlos
Syndrome. I live it. I am a daughter, a sister,
a mother, and more to others with EDS. I
truly understand and empathize with the EDS
Journey. I am one of the tribe.
How simple for those who do not know EDS to
assume that our defning trait is hypermobility.
WELCOME FROM NEW CHAIR OF THE
PROFESSIONAL ADVISORY NETWORK
As the EDNF web site states on one of its pages,
The defning trait of those affected by EDS is the
search for information. This rather innocent
sentence really strikes me, as it underscores
my own quest. I understand frsthand the
frustration EDS patients encounter with
things like years of misdiagnosis, unwarranted
physician skepticism of an established EDS
diagnosis, and many physicians general lack
of awareness or initiative to become familiar
with standards of care.
I am eager to work with my colleagues to effect
positive changes for those who struggle with
Ehlers-Danlos syndrome. The EDNF PAN seeks
to support EDNFs Mission by volunteering
medical expertise to ensure the valuable
resources we make available to patients,
family, and healthcare providers are accurate,
informative, and useful. Our role is expanding,
and our opportunity to make signifcant
impact will be even greater when our Center
for Clinical Care & Research is established.
Together we can make a difference.
Heidi A Collins, MD
. ..... .., ... ... .... ..
. _.. _..
FOR HIS SERVICE AS CHAIRMAN AND AS A CONTINUING MEMBER OF THE PROFESSIONAL ADVISORY NETWORK
The full listing of Professional Advisory Network members can be found here.
SPRING 2013
PAGE 4
MARYLAND AND D.C.
EDS SUPPORT GROUPS EVENT
O
N Sunday, March 10, 2013, members
of the Maryland and D.C. EDS support
groups gathered at Champps in Columbia,
Maryland for their frst Social Zebra event.
The evening included a dietary-restriction
friendly buffet, appetizers, and cake. The
gathering also honored Shani Weber for her
unwavering dedication and leadership, as well
as the knowledge she has shared with the local
support group and with Team Inspire. Heather
Pierce was not able to be in attendance, but
the group intends to honor her for her similar
dedication.
Social Zebra events create an opportunity
for us to get to know each other aside from
all the medical hardships. Sometimes it is
important to take our minds off of what
can be very depressive and overwhelming.
Some medical issues still creep into
conversation which cannot be helped, but
for the evening it was minimized and all who
attended had a wonderful time.
We look forward to our next outing in June or
July, which we are planning as a potluck picnic.
Two of the pictures following are of the whole
group. Shani Weber is sitting in the front on the
left. One other is of Jill Greenspan and me with
the cake, and one shows our themed dcor.
Laura Grime-Hartle
SPRING 2013
PAGE 5
SPRING 2013
PAGE 6
UNPREDICTABLE
EXTENDED METAPHOR POEM
Spreading out a puzzle
With no pieces ftting
There is space between them
Air rushing through
But this puzzle can never be fnished
The pieces changing
Ever so slightly
This never ending puzzle,
Getting harder and harder
Never ending
Twists and turns
Crackles and pops while struggling to ft the pieces together
Changing,
Changing
Unpredictable.
Isabel Libby
Isabel is 16 years old and lives in Massachusetts.
SPRING 2013
PAGE 7

A MOMENT IN TIME
A simple moment in time thats
all it took to change a lifes look.
The pain, the shame, when charity came.
Lost and distraught, I fought.
A Shameless passion.
Distant love, a new dove,
into a feathered fight.
What trite? May I might?
Courageous faith, the earth awaits
its leader.
Joanne Ryshpan-Haris
SPRING 2013
PAGE 8

POEM
Everyone should love a zebra
We can be found all around the world.
Some might call us invisible because
we are hidden in the crowd.
Yet, if you have ever loved one Zebra,
You know how your life has changed and will be changed forever
Each zebra is different
But if you look a little closer,
you will see we are similar and unstoppable
And most importantly we are NOT INVISIBLE.
If you ever feel alone remember:
In our zebra family, we will always understand
and you will be loved.
There are other Zebras out there.
So listen close and you might hear a zebra around the corner
Yet, dont mistake that zebra for a horse.
The strongest cure we have right now is the stripes we share.
So if we let our stripes shine through and help each other
And be the strongest hope we have
because we need that hope to heal
Mary-Kate Wells & Stephanie Spitz
SPRING 2013
PAGE 9

M
Y daughter Locklyn Eschauzier, age seven, goes by Lucky. She
was diagnosed with HEDS two years ago when she was fve. It has
been a diffcult two years, but she has a really good attitude. Her cursive
says, Since I have Ehlers-Danlos I need to get stronger so I go to horseback
riding. She is referring to the hippotherapy that we do with her. She is
also in physical therapy, water therapy, an adaptive martial arts program,
and other programs. (Deirdre Eschauzier)
SPRING 2013
PAGE 10
T
O those I love: Ive been asked many
times how I make it through the days.
You know, the hard ones when the pain and
exhaustion just become a little much. Well, I
write. It is just after those moments pass that
my head becomes clear and I journal all my
little ah-ha moments. While going through
my old passages I came across the best lesson
of all the answers to life.
From me to all of you:
Ill start today off with a secret. One Ill share
only with you. Are you paying attention? Here
it is, the meaning of life.
Life is all about moments, single events in time.
Its about the time spent laughing, sharing a
glance, a meal, a conversation. Its that time
you walked alone on the beach, in the woods,
on the sidewalk in front of your house. Its
when you shared a family event, welcomed
in a new friend or buried a loved one. Its the
time you scratched your knee, kissed another,
watched a movie, read a book, saw the sun set.
Its the time you cried until your eyes ran dry.
Its happening when you hugged a stranger,
talked on the phone, danced in the rain, made
something with your own hands. Its that time
when you were all alone and you sang like you
were performing on stage. Its when you sat
quietly and listened. Its when you did nothing
at all. Are you paying attention? In this very
moment, this is it, this is life.
MY SIMPLE LESSON FROM THIS
EHLERS-DANLOS & CHIARI LIFE
So listen and learn: When you hear music,
dance. When you smell great food, eat. When
someone is in need, help. Every once in a while
wake up just to watch the sun rise and listen
to the silence. Realize that you are not alone;
we are all connected. Approach everyone with
understanding. When you meet the one, and all
of a sudden everything makes sense, fall madly
in love. Kiss and hug passionately; your soul
will shine. Stop worrying about everything. Its
a perpetual battle that will only exhaust you.
When you lose someone you love, get angry,
cry hard, and then let them go; it was just their
time. Change someones life. Make someone
laugh. Be kind. Swim naked in the ocean, walk
barefoot in the grass, dance in the rain. Believe
in yourself; I do. Speak to someone who is sick.
Have them tell you their story. Youll be better
for it. Stop talking so much. Listen, learn, and
pass it along.
This is my gift to those who give me so much.
Lessons learned from me, a girl sick but
fghting on. Please feel free to share with those
you love, as I try to raise awareness for Chiari
Malformation and Ehlers-Danlos syndrome.
All my love,
Alyson Salzedo-Benison
SPRING 2013
PAGE 11
R
ATES of celiac disease and non-celiac
gluten sensitivity have risen steadily in
the U.S. in the past three or four decades, and
it has been speculated that increases in protein
content bred into wheat since its domestication
may be the culprit. In a new study
1
analyzing
historical trends in wheat breeding Donald
D. Kasarda, a leading cereal chemist at the
U.S. Department of Agriculture, has found
that, while the protein content of wheat has
not changed appreciably, what has changed is
the growing use of a food additive called vital
gluten in commercially baked products.
Early farmers domesticated wheat from wild
grasses 10,000 years ago by breeding it to have
larger kernels that
would separate from
the plant by threshing.
This process actually
reduced the overall
protein content of
wheat; and the trend
probably continued
until the advent 2000
to 5000 years ago of
leavened bread, which
requires a protein content of at least 11%. Today
we have hard wheats with a protein content
of about 12 to 14% for breadmaking and
starchier, soft wheats with a protein content
of 7 to 11% for making pastry. Taking a look
at wheat growing trends in the U.S. during the
20th Century, Dr. Kasarda found that protein
content varied year to year with weather
conditions (dry years driving the percentage
up), but that the overall content remained

WHAT IS IT ABOUT GLUTEN, ANYWAY?
steady, especially since grain producers tend to
blend fours from different years to make their
product more consistent.
So what might be causing our soaring
rates of gluten intolerance? The per person
consumption of wheat products by Americans
increased from about 1970 to 2000; but it has
trended down since then, and even in 2000
it was nowhere near its highest point, which
came back in the late 1880s. What has changed
is the use of vital gluten as a food additive.
Vital gluten is gluten protein that has been
fractionated from wheat four by washing
starch out of it. Gluten protein normally makes
up about 70 to 75% of the overall protein
content of wheat, no
matter the variety.
With the addition
of vital gluten this
percentage would
increase considerably.
The practice seems
to have begun in the
1970s, and Dr. Kasarda
calculates that in the
intervening decades
consumption of vital gluten has tripled. Thus
it is trending closely with rising rates of celiac
disease and non-celiac gluten sensitivity.
Ironically, the doping of commercially
baked goods with vital gluten may have been
prompted by consumer demand for healthier
bread high fber, whole grain bread since
it improves the texture and elasticity of dough
and enhances the loaf volume of heavy bread.
It is also widely used in fast food.
Since the minimum allowable daily intake of
gluten for an individual with celiac disease is
well below what is found in a slice of bread of
1
Kasarda DD: Can an Increase in Celiac Disease Be At-
tributed to an Increase in the Gluten Content of Wheat
as a Consequence of Wheat Breeding?, Journal of Agricul-
tural and Food Chemistry 61:1155-1159, 2013.
It could be that the
immune system
reaches a tipping
point with increased
exposure to gluten.
SPRING 2013
PAGE 12
any type, doped or not, it is diffcult to say how
a trend toward increased gluten consumption
in the population overall would be driving
celiac rates to their current epidemic levels.
Dr. Kasarda speculates that it could be that
the immune system reaches a tipping point
with increased exposure to gluten, at which it
switches abruptly from tolerance to intolerance.
Or there may something about vital gluten that
is different. There are no genetically modifed
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wheats in commercial use in the U.S., but 80%
of our vital gluten is imported from such places
as Australia, Europe, Canada, and even China.
So, while reports about engineered wheat may
be erroneous, it does appear that there is good
reason why many of us are fnding that gluten-
free is the way to go.
Amy Bianco
Medical Section Editor
SPRING 2013
PAGE 13
one week beforeheroically pushing her out
of the way of an oncoming imaginary sniper
bullet, for which I have yet to be thanked, I was
trying as hard as I could she didnt even see it
coming I was trying as hard as I could to be
on my best behavior.
And I saw my sisters face, this wail of pain and
suffering and surprise threatening to erupt from
her mouth and threatening to wake my parents
from the long winters nap for which they had
settled. So I did the only thing my little frantic
seven year-old brain could think to do to avert
this tragedy. And if you have children, youve
seen this hundreds of times before. I said,
Amy, Amy, wait. Dont cry. Dont cry. Did you
see how you landed? No human lands on all
fours like that. Amy, I think this means youre
a unicorn.
Now that was cheating, because there was
nothing in the world my sister would want
more than not to be Amy the hurt fve year-
old little sister, but Amy the special unicorn. Of
course, this was an option that was open to her
brain at no point in the past. And you could
see how my poor, manipulated sister faced
confict, as her little brain attempted to devote
resources to feeling the pain and suffering and
surprise she just experienced, or contemplating
her new-found identity as a unicorn. And the
latter won out. Instead of crying, instead of
ceasing our play, instead of waking my parents,
with all the negative consequences that would
have ensued for me, instead a smile spread
across her face and she scrambled right back up
onto the bunk bed with all the grace of a baby
unicornwith one broken leg.
What we stumbled across at this tender age
of just fve and seven we had no idea at the
TED TALK: SHAWN ACHOR
THE HAPPY SECRET TO BETTER WORK
W
HEN I was seven years old and my sister
was just fve years old, we were playing
on top of a bunk bed. I was two years older than
my sister at the time I mean, Im two years
older than her now but at the time it meant
she had to do everything that I wanted to do,
and I wanted to play war. So we were up on top
of our bunk beds. And on one side of the bunk
bed, I had put out all of my G.I. Joe soldiers and
weaponry. And on the other side were all my
sisters My Little Ponies ready for a cavalry charge.
There are differing accounts of what actually
happened that afternoon, but since my sister
is not here with us today, let me tell you the
true story which is my sisters a little bit on
the clumsy side. Somehow, without any help
or push from her older brother at all, suddenly
Amy disappeared off of the top of the bunk bed
and landed with this crash on the foor. Now I
nervously peered over the side of the bed to see
what had befallen my fallen sister and saw that
she had landed painfully on her hands and
knees on all fours on the ground.
I was nervous because my parents had charged
me with making sure that my sister and I played
as safely and as quietly as possible. And seeing
as how I had accidentally broken Amys arm just
CLICK HERE TO VIEW TALK
SPRING 2013
PAGE 14
time was something that was going be at the
vanguard of a scientifc revolution occurring
two decades later in the way that we look at the
human brain. What we had stumbled across is
something called positive psychology, which is
the reason that Im here today and the reason
that I wake up every morning.
When I frst started talking about this research
outside of academia, out with companies and
schools, the very frst thing they said to never
do is to start your talk with a graph. The very
frst thing I want to do is start my talk with a
graph. This graph looks boring, but this graph
is the reason I get excited and wake up every
morning. And this graph doesnt even mean
anything; its fake data. What we found is
If I got this data back [from] studying you here
in the room, I would be thrilled, because theres
very clearly a trend thats going on there, and
that means that I can get published, which is
all that really matters. The fact that theres one
weird red dot thats up above the curve, theres
one weirdo in the room I know who you are,
I saw you earlier thats no problem. Thats
no problem, as most of you know, because I
can just delete that dot. I can delete that dot
because thats clearly a measurement error. And
we know thats a measurement error because
its messing up my data.
So one of the very frst things we teach people
in economics and statistics and business and
psychology courses is how, in a statistically
valid way, do we eliminate the weirdos. How
do we eliminate the outliers so we can fnd the
line of best ft? Which is fantastic if Im trying
to fnd out how many Advil the average person
should be taking two. But if Im interested in
potential, if Im interested in your potential,
or for happiness or productivity or energy or
creativity, what were doing is were creating
the cult of the average with science.
If I asked a question like, How fast can a
child learn how to read in a classroom?
scientists change the answer to, How fast does
the average child learn how to read in that
classroom? and then we tailor the class right
towards the average. Now if you fall below
the average on this curve, then psychologists
get thrilled, because that means youre either
depressed or you have a disorder, or hopefully
both. Were hoping for both because our
business model is, if you come into a therapy
session with one problem, we want to make
sure you leave knowing you have ten, so you
keep coming back over and over again. Well
go back into your childhood if necessary, but
eventually what we want to do is make you
normal again. But normal is merely average.
And what I posit and what positive psychology
posits is that if we study what is merely
average, we will remain merely average. Then
instead of deleting those positive outliers, what
I intentionally do is come into a population
like this one and say, why? Why is it that some
of you are so high above the curve in terms
of your intellectual ability, athletic ability,
musical ability, creativity, energy levels, your
resiliency in the face of challenge, your sense
of humor? Whatever it is, instead of deleting
you, what I want to do is study you. Because
maybe we can glean information not just
how to move people up to the average, but
how we can move the entire average up in our
companies and schools worldwide.
SPRING 2013
PAGE 15
The reason this graph is important to me is,
when I turn on the news, it seems like the
majority of the information is not positive,
in fact its negative. Most of its about murder,
corruption, diseases, natural disasters. And
very quickly, my brain starts to think thats
the accurate ratio of negative to positive in the
world. What thats doing is creating something
called the medical school syndrome which,
if you know people whove been to medical
school, during the frst year of medical training,
as you read through a list of all the symptoms
and diseases that could happen, suddenly you
realize you have all of them.
I have a brother in-law named Bobo which
is a whole other story. Bobo married Amy the
unicorn. Bobo called me on the phone from
Yale Medical School, and Bobo said, Shawn,
I have leprosy. Which, even at Yale, is
extraordinarily rare. But I had no idea how to
console poor Bobo because he had just gotten
over an entire week of menopause.
See what were fnding is its not necessarily
the reality that shapes us, but the lens through
which your brain views the world that shapes
your reality. And if we can change the lens, not
only can we change your happiness, we can
change every single educational and business
outcome at the same time.
When I applied to Harvard, I applied on a dare.
I didnt expect to get in, and my family had
no money for college. When I got a military
scholarship two weeks later, they allowed me
to go. Suddenly, something that wasnt even
a possibility became a reality. When I went
there, I assumed everyone else would see it as
a privilege as well, that theyd be excited to be
there. Even if youre in a classroom full of people
smarter than you, youd be happy just to be in
that classroom, which is what I felt. But what
I found there is, while some people experience
that, when I graduated after my four years and
then spent the next eight years living in the
dorms with the students Harvard asked me
to; I wasnt that guy. I was an offcer of Harvard
to counsel students through the diffcult four
years. And what I found in my research and my
teaching is that these students, no matter how
happy they were with their original success
of getting into the school, two weeks later
their brains were focused, not on the privilege
of being there, nor on their philosophy or
their physics. Their brain was focused on the
competition, the workload, the hassles, the
stresses, the complaints.
When I frst went in there, I walked into the
freshmen dining hall, which is where my
friends from Waco, Texas, which is where I
grew up I know some of you have heard of
it. When theyd come to visit me, theyd look
around, theyd say, This freshman dining hall
looks like something out of Hogwarts from
the movie Harry Potter, which it does. This
is Hogwarts from the movie Harry Potter and
thats Harvard. And when they see this, they
say, Shawn, why do you waste your time
studying happiness at Harvard? Seriously, what
does a Harvard student possibly have to be
unhappy about?
Embedded within that question is the key to
understanding the science of happiness. Because
what that question assumes is that our external
world is predictive of our happiness levels,
when in reality, if I know everything about your
external world, I can only predict ten percent
of your long-term happiness. Ninety percent of
your long-term happiness is predicted not by
the external world, but by the way your brain
processes the world. And if we change it, if we
change our formula for happiness and success,
what we can do is change the way that we
can then affect reality. What we found is that
only 25 percent of job successes are predicted
by I.Q. Seventy-fve percent of job successes
are predicted by your optimism levels, your
social support and your ability to see stress as a
challenge instead of as a threat.
SPRING 2013
PAGE 16
I talked to a boarding school up in New England,
probably the most prestigious boarding
school, and they said, We already know
that. So every year, instead of just teaching
our students, we also have a wellness week.
And were so excited. Monday night we have
the worlds leading expert coming in to speak
about adolescent depression. Tuesday night
its school violence and bullying. Wednesday
night is eating disorders. Thursday night is
elicit drug use. And Friday night were trying to
decide between risky sex or happiness. I said,
Thats most peoples Friday nights. Which
Im glad you liked, but they did not like that at
all. Silence on the phone. And into the silence,
I said, Id be happy to speak at your school,
but just so you know, thats not a wellness
week, thats a sickness week. What youve done
is youve outlined all the negative things that
can happen, but not talked about the positive.
The absence of disease
is not health. Heres
how we get to health:
We need to reverse the
formula for happiness
and success. In the
last three years, Ive
traveled to 45 different
countries, working
with schools and
companies in the
midst of an economic downturn. And what
I found is that most companies and schools
follow a formula for success, which is this: If
I work harder, Ill be more successful. And if
Im more successful, then Ill be happier. That
undergirds most of our parenting styles, our
managing styles, the way that we motivate our
behavior.
And the problem is its scientifcally broken
and backwards for two reasons. First, every
time your brain has a success, you just changed
the goalpost of what success looked like. You
got good grades, now you have to get better
grades, you got into a good school and after
you get into a better school, you got a good job,
now you have to get a better job, you hit your
sales target, were going to change your sales
target. And if happiness is on the opposite side
of success, your brain never gets there. What
weve done is weve pushed happiness over
the cognitive horizon as a society. And thats
because we think we have to be successful,
then well be happier.
But the real problem is our brains work in the
opposite order. If you can raise somebodys
level of positivity in the present, then their
brain experiences what we now call a happiness
advantage, which is your brain at positive
performs signifcantly better than it does at
negative, neutral or stressed. Your intelligence
rises, your creativity rises, your energy levels
rise. In fact, what weve found is that every
single business outcome improves. Your brain
at positive is 31 percent
more productive
than your brain at
negative, neutral or
stressed. Youre 37
percent better at sales.
Doctors are 19 percent
faster, more accurate
at coming up with
the correct diagnosis
when positive instead
of negative, neutral
or stressed. Which means we can reverse the
formula. If we can fnd a way of becoming
positive in the present, then our brains work
even more successfully as were able to work
harder, faster and more intelligently.
What we need to be able to do is to reverse this
formula so we can start to see what our brains
are actually capable of. Because dopamine,
which foods into your system when youre
positive, has two functions. Not only does it
make you happier, it turns on all of the learning
centers in your brain allowing you to adapt to
the world in a different way.
Your brain at positive
performs signifcantly
better than it does
at negative, neutral
or stressed.
SPRING 2013
PAGE 17
Weve found that there are ways that you can
train your brain to be able to become more
positive. In just a two-minute span of time done
for 21 days in a row, we can actually rewire your
brain, allowing your brain to actually work
more optimistically and more successfully.
Weve done these things in research now in
every single company that Ive worked with,
getting them to write down three new things
that theyre grateful for 21 days in a row, three
new things each day. And at the end of that,
their brain starts to retain a pattern of scanning
the world, not for the negative, but for the
positive frst.
Journaling about one positive experience
youve had over the past 24 hours allows your
brain to relive it. Exercise teaches your brain
that your behavior matters. We fnd that
meditation allows your brain to get over the
cultural ADHD that weve been creating by
trying to do multiple tasks at once and allows
our brains to focus on the task at hand. And
fnally, random acts of kindness are conscious
acts of kindness. We get people, when they
open up their inbox, to write one positive
email praising or thanking somebody in their
social support network.
And by doing these activities and by training
your brain just like we train our bodies, what
weve found is we can reverse the formula for
happiness and success, and in doing so, not
only create ripples of positivity, but create a
real revolution.
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Shawn Achor
TED.com
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S
TRONG new biochemical evidence exists
showing that the cereal grain sorghum is a
safe food for people with celiac disease, who
must avoid wheat and certain other grains,
scientists are reporting. Their study, which
includes molecular evidence that sorghum
lacks the proteins toxic to people with celiac
disease, appears in ACS Journal of Agricultural
and Food Chemistry.
Paola Pontieri and colleagues explain that those
gluten proteins, present in wheat and barley,
trigger an immune reaction in people with
celiac disease that can cause abdominal pain
and discomfort, constipation, diarrhea, and
other symptoms. The only treatment is lifelong
avoidance of gluten. Sorghum, they note, has
emerged as an alternative grain for people with
celiac disease. In Western countries, sorghum
traditionally has been an animal feed. But in
Africa and India, it long has been a food for
people. Recently, U.S. farmers have begun
producing sorghum hybrids that are a white
grain, known as food-grade sorghum. The
researchers set out to make a detailed molecular
determination of whether sorghum contains
those toxic gluten proteins.
They describe evidence from an analysis of
the recently published sorghum genome
(the complete set of genes in the plant)
and other sources that verify the absence of
gluten proteins. The authors also report that
sorghum has high nutritional value. Food-
grade sorghums should be considered as an
important option for all people, especially
celiac patients, the report concludes.
The authors acknowledge funding from the Regione
Campania, the Istituto Banco di Napoli-Fondazione
and the Compagnia di San Paolo.
Medical News Today
Sorghum Is A New Safe Grain For People With Celiac Disease
SPRING 2013
PAGE 18
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L OOS E CONNECTIONS
SPRING 2013
PAGE 19
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