Post on 07-Apr-2018
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Welcome to the first
issue of Scott-Free! I
recently reviewed the results
of a Celiac.com survey, and
was surprised to learn that 37
percent of 472 respondents do
not believe that there will ever
be a cure for celiac disease,
while 32 percent think there will
be, and 31 percent are unsure.
After reading the question
again I realized that it might be
loadeddoes the gluten-free
diet count as a cure? Some
people think so. Others think
that the diet is a curse, or at
best just a treatment. With the
vast improvement that has taken
place during the last few years in
the quality of gluten-free foods I
like to think of the diet as really
good tasting cure. Of course
the diet isnt really a cure, but
the proof is in the pudding, and
the diet has allowed my body to
become healthy again and make
me feel as though I am cured,
and that is what countsisnt
it?
Like most people, however, I
still hold out hope that all the
celiac disease research that will
be done in the future will yield a
cureone that does not include
a special diet. But be careful
what you wish for because if you
are like me your diet is probably
healthier now than it ever was,
mostly due to the necessary
avoidance of most fast and
processed foods. Perhaps the
diet is really a blessing in disguise
for many of us, and we will
actually live longer and healthier
lives due to it, in spite of having
a disease. But at the rate they
are currently spending money on
celiac disease research there will
never be a cureyou say? After
reading Laura Yicks summary
of this years Digestive Disease
Week International Conference
in San Francisco (pg. 8), which
includes a proclamation made
by Dr. Alessio Fasano that
celiac disease is by far the
most frequent genetic disease
of human kind, I have renewed
confidence that there will be a lot
more money spent on research
in the future, and eventually a
cure will be found.
More surprises in the survey
results came when 6.5 percent
Summer 2002 Volume I Number
The Gluten-Free Diet: Curse or Cure?
Page
Paris Conference 2
Michelle Melin-Rogovin
Celiac Kids Camps 5Danna Korn
Celiac Advocacy 7 Cynthia Kupper, RD, CD
DDW Conference 8 Laura Yick
Enlighten One More! 9 Elaine Monarch
The Basic Cake 10 Carol Fenster, Ph.D.
Eat and Enjoy! 12 Connie Sarros
By Scott Adams
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of respondents said spelt was
safe for a gluten-free diet, while
32.3 percent were unsure. I like
to interpret this result as 38.8
percent of respondents were just
diagnosed and are on their first
visit to Celiac.combut this is
wishful thinking. Unfortunatelythis result means that we have
more work to do (spelt is not
safe!). The most surprising
response, however, was how
many people cheat on their
dietsa full 43 percent! Some
13 percent actually cheat 20-
40 times per year or more. The
main excuses for cheating: 1)
People missed a particular
item too much to go without
it; and 2) Gluten-free foods are
not always available or are too
expensive. These were the same
folks who got the spelt question
wrongthe ones who were just
diagnosed, right? We have more
work to do...
There are just too many great
alternatives out there to knowingly
eat gluten. After learning so
much over the years about food
ingredients and preparation I like
to think that I could walk into
a restaurant called House of
Gluten and order a gluten-free
meal. Educating yourself about
how food is prepared and which
ingredients are safe or not safe
is really the key to enjoying life
while on this diet. Remember,
the next time you are tempted,
say to yourself over and over
this diet is a really good tasting
cureand dont cheat! Oh no
65 percent of respondents dont
know that buckwheat is safe,
and 58 percent dont know that
Quinoa is safe...time for me to
get back to workenjoy Scott-
Free!
Curse or Cure, continued
10th InternationalConference on CeliacDisease ResearchYields New Findingson Prevalence,
Screening and Celiac-Related ConditionsBy Michelle Melin-Rogovin
On June 2, 2002, hundreds ofresearchers traveled from allover the world to Paris, France, inorder to hear the latest scienticreports on celiac disease researchand to present results from theirown investigations. Over the courseof three days, scientists presented
dozens of reports, and displayedover a hundred posters coveringall aspects of celiac disease,from laboratory research on themicrobiologic aspects of the disease,to quality of life issues in patientswho are on the gluten-free diet.
There were so many exciting reportspresented at the conference, andthe following describes the researchndings from these new reports
concerning the screening and clinicalpresentation of celiac disease,osteoporosis and osteopathy andneurological conditions.
SCREENING ISSUES IN CELIAC
DISEASE
In order to understand how bestto screen populations for celiacdisease, it is important to know howceliac disease affects a portion ofthe population, and how it compares
to similar populations in othercountries.
Mayo Clinic Retrospective
Study
Dr. Joseph Murray from the MayoClinic conducted a retrospectivestudy on the population of peopleliving in Olmsted County, Minnesota.This county has kept medicalrecords on all of its residents for over100 years. Dr. Murray looked at the
medical records to determine whichresidents were diagnosed with celiacdisease from 1950 to 2001. Hefound 82 cases of celiac diseasewith 58 in females and 24 in malesThe average age of diagnosis was45. Pediatric diagnoses of celiacdisease during this time period were
extremely rare.
Dr. Murray found that while thediagnosis rate of dermatitisherpetiformis (DH) remainedconstant over the 51 year periodthe diagnosis rate of celiac diseaseincreased from 0.8 to 9.4 per 100,000people. He also noted that over timeadults with celiac disease were lesslikely to present diarrhea and weightloss as symptoms. Encouragingly
he determined that the average lifeexpectancy for a diagnosed celiac inthis community was no less than thatof the normal population, despite thefact that celiac disease was oftendiagnosed later in life.
What does this mean?
The celiac disease diagnosis rate inthis county is much lower than theactual incidence rates that have beenreported in other studies; however
that rate has greatly increasedover the past 51 years. It is alsonoteworthy that so few childrenwere diagnosed with celiac diseaseThe analysis highlights interestingand useful information about thepresentation of celiac disease inadults, and about the potential lifeexpectancy for people with celiacdisease who are diagnosed later inlife.
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United States and Europe
Compared
Dr. Carlo Catassi of Ancona, Italyis currently a visiting researcher atthe University of Maryland CeliacResearch Center. He presentedan analysis of the similarities anddifferences between the clinicalpresentations of celiac disease inthe United States and Europe.
Dr. Catassi established that theprevalence of celiac disease in theU.S. and Europe are the same andrange between 0.5 to 1.0 percentof the general population. Theprevalence in at-risk populationsis much higher, ranging between 5and 10 percent, and the prevalence
in people with Type 1 Diabetes isapproximately 5 percent in both theU.S. and Europe.
He found that the "typical"(symptomatic) cases of celiacdisease were less common inthe U.S., and that the "latent"(asymptomatic) cases were muchmore common. Dr. Catassi statedthat these differences could be dueto genetic factors (for example, there
are more Asians in the United Statesthan in Europe), but are more likelydue to environmental factors. Henoted that infants born in the U.S.are often breastfed longer than theirEuropean counterparts. There isalso a lower gluten intake in the rstmonths of life for infants in the U.S.The timing of the introduction ofcereals could help explain why many
American children have somewhatmilder symptoms and a more
unusual presentation of the disease.
What does this mean?
Dr. Catassis analysis underscoresthe need to better educatephysicians in the U.S. so that theylearn to see "typically atypical"signs of celiac disease in childrenand adults. He also reinforced theimportance of breastfeeding as aprotective factor for children witha genetic predisposition to celiac
disease, which could also improvethe outlook for European children inthe future.
United States Prevalence
Research
Dr. Alessio Fasano presented aposter which outlined his recentndings that are a follow-up to his
now famous 1996 blood screeningstudy. The original study found that 1in 250 Americans had celiac disease.It was performedusing anti-gliadinantibodies (AGA),and when a bloodsample tested
AGA positive it wasconrmed usinganti-endomysial(EMA) antibodytesting.
Now thathuman tissuetransglutaminase(tTG) testing is available, Dr. Fasanoand his colleagues wanted to seeif the results of their original studywould be different using the tTGtest. He and his colleagues testedthe negative samples in the originalstudy, and found 10 more positivesusing the tTG test. Two of thesesamples were conrmed positivewhen checked using the AGAantibody test. Dr. Fasano concludedthat the original (1996) prevalenceestimate of 1 in 250 understated thetrue prevalence rate, which couldactually be greater than 1 in 200
Americans.
Dr. Michelle Pietzak, a pediatricgastroenterologist at the Universityof California at Los Angeles, alsopresented a poster which describedthe prevalence of celiac disease inSouthern California. In a study of1,094 participants, Dr. Pietzak foundthat 8% of Hispanics tested positivefor celiac disease. The most commonsymptoms presented by subjects inher study included abdominal pain,diarrhea, constipation, joint pain andchronic fatigue.
What does this mean?
It is important to understand thatthe foundation of all U.S. prevalenceresearch on celiac disease beganwith the blood donor studyperformed by Dr. Fasano in 1996.His newly revised ndings, whichhave been supported by at least
one other major study, show thatthe prevalence of celiac disease inthe U.S. population is much higher
than originally believed,and that it could begreater than 1 in 200people. Additionally,the California studyis one of the rst toestablish a celiacdisease prevalencegure for the Hispanicpopulation in the U.S.,and if the 8 percentgure is supported byfurther research it wouldindicate that celiac
disease signicantly affects HispanicAmericans.
OSTEOPOROSIS AND
OSTEOPATHY
Dr. Julio Bai of Argentina presentedimportant information on a conditionthat affects many people withceliac disease, and one that isoften overlooked by physiciansosteoporosis or osteopathy (itsmilder form). Both children andadults with celiac disease can havelow bone mineral density, and itsmethod of treatment can haveimportant consequences.
Dr. Bai treats adults with boneloss, and has studied the nature offractures and bone health in adultswith celiac disease. In a case-controstudy of 78 celiac disease patients,Dr. Bai found that symptomaticpatients were more likely toexperience bone fractures than thenormal population. Interestingly, healso found that patients with latent(asymptomatic) celiac disease hadlower fracture rates than thosewith symptoms, and that the rate
Paris Conference, continued
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In SouthernCalifornia 8%of Hispanics
tested
positive forceliac disease
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was equal to that of the normalpopulation. None of the patients,however, experienced a fracture ofthe more serious typein the hip,spine or shoulder, and the fracturestended to occur in their arms, legs,hands and feet.
The doctor also discussedpreliminary evidence which showedthat most women with osteopathyand celiac disease who go on agluten free diet will experiencean improvement in bone density,while many men do not. Therewas, however, no difference foundbetween the fracture rates of menand women.
Dr. Bai also found that nutritional andmetabolic deciencies in patientswith celiac disease and osteopathymight also contribute to fracturesby weakening the muscles thatsurround essential bones. He addedthat immunological factors could alsoenhance or inhibit bone rebuilding,and that there is a bone-specictissue transglutaminase (tTG) thatplays a role in this process.
What does this mean?It was certainly good news to hearthat most people with low bonedensity due to celiac disease canreverse the damaging process, andif celiac-related fractures do occurthey tend to be of the less serioustype. Additionally, it was interestingto learn just how important a rolemuscle health plays in preventingceliac-related fractures.
Osteopathy in ChildrenDr. Mora, an Italian researcher,presented data on osteopathy inchildren with celiac disease. Hisresults indicate that a gluten-freediet can improve bone mass, andthe effect is maintained even after 10years. He also added that a gluten-free diet improved the overall bonemetabolism of the children, andthat the diet alone could cure theirosteopathy.
Osteopenia and Osteoporosis:
Conditions Related to Celiac
Disease
In a chart prepared by Dr. DavidSanders of the United Kingdom,data on 674 patients, 243 withosteoporosis and 431 withosteopenia, were presented. He
found 10 cases of celiac diseaseamong a mostly female populationthat had an average age of 53. Inall ten cases, patients either hada history of iron-decient anemiaor gastrointestinal symptoms. Heconcluded that all patients withosteopenia or osteoporosis and ahistory of anemia or gastrointestinalsymptoms should be screened forceliac disease.
What does this mean?
Dr. Sanders has identied a subsetof people with osteoporosis andosteopenia that should be screenedfor celiac diseasethose who havebeen anemic or have gastrointestinalsymptoms. This helps physiciansknow when to refer patients forceliac disease screening.
NEUROLOGICAL SYMPTOMS
Dr. Marios Hadjivassiliou of theUnited Kingdom presented data onneurological symptoms and glutensensitivity. In an eight-year study,Dr. Hadjivassiliou screened peoplewho had neurological symptoms ofunknown origin using the anti-gliadinantibody (AGA) test. He found that57 percent of these patients hadantibodies present in their blood,compared to 12 percent of healthycontrols or 5 percent of patients witha neurological condition of knownorigin.
From this group, he studied 158patients with gluten sensitivity andneurological conditions of unknownorigin (only 33 percent of thesepatients had any gastrointestinalsymptoms). The most commonneurological conditions in this groupwere ataxia, peripheral neuropathies,myopathy, and encephalopathy (very
severe headache). Less commonwere stiff person syndrome,myelopathy and neuromyotonia.
He noted that ataxia is not a result ofvitamin deciencies, but is insteadan immune-mediated condition.Patients with ataxia have uniqueantibodies that are not found in
patients with celiac disease. Dr.Hadjivassiliou felt that up to 30percent of idiopathic neuropathiescould be gluten-related, and thatthere is preliminary evidence whichindicates that a gluten-free diet ishelpful in cases of neuropathy andataxia.
What does this mean?
It is interesting to note that Dr.Hadjivassiliou has studied glutensensitivity and not celiac disease.The test used in this study is notspecic enough to identify peoplewho were likely to have celiacdisease. However, his nding thatthe gluten-free diet may be helpfuin people with certain types ofneuropathy and ataxia opens thedoor for further research on theseconditions in people with celiacdisease.
Michelle Melin-Rogovin is the program director of the Universityof Chicago Celiac Disease Program.Ms. Melin-Rogovin has 12 years ofexperience in health care and patient
advocacy, working with children andadults who face a variety of chronicmedical conditions.
The University of Chicago CeliacDisease Program serves peoplewith celiac disease and their families
in the United States, and aims to increase diagnosis rates in thcountry through medical education,
patient services, public awarenes and medical research. For morinformation e-mail Michelle at:mmelinro@PEDS.BSD.UCHICAGO.EDUor telephone her at: (773) 702-7593.
Paris Conference, continued
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For a kid, absolutely nothingcompares to the excitementof counting down those last
few days before school is out
for summer, and life goes from
routine and imprisoning to lazy
and carefree. Thats right singit now schools out for summer!
We parents, admittedly, have some
mixed emotions about summer
break. We eagerly await the
mornings free of chaos and last-
minute-I-have-nothing-to-wear
tantrums, evenings without battles
over homework, and afternoons
when kids will have more time
to play, and maybe even to help
around the house and yard (amom can dream, cant she?).
But summer break is a catalyst
for new battles, such as trying to
explain to our kids that yes, it is
your summer vacation, and yes, it
is supposed to be relaxing, but 16
hours of television is still too much.
The rst few days are what I call
freebies. We all enjoy the lack of
structure, allowing our little ones tosleep as long as theyd like (but why
is it that on school days they whine
that they could have slept until
noon, and during summer break
theyre up at the crack of dawn?),
and even buying into the oh-so-
well-presented argument that this
is just the rst (second, third) day
of vacation, and its the only day
theyll watch TV all summer
promise! Energized by the
contagious enthusiasm of summer
break, we pack weeks worth of fun
into the rst few days, and revel
in every minute of family freedom.
And thenby about day fouryou
hear those dreaded two words
that can, in and of themselves,
induce critically high blood-
pressure levels faster than
anchovies on crackers: Im bored!
Most parents go into the summer
with good intentions and the
best-laid plans for staving off
the boredom blues. Fun-but-
educational math and science
workbooks, fun family tness
programs, and a well-stocked artsand crafts cabinet can sound like a
good idea, but kids (and adults!) just
want to have fun. The difference is
that adults have responsibilities and
obligations, and cant usually put
our lives on hold for three months.
They, however, can and should.
But my kids are gluten-free.
Oh, good point. That just means
you may have to be a smidge
more creative, but basically, ifyour child cant eat gluten, your
options for battling boredom are
just the same as everyone elses.
Yep. Just the same. You may have
to be a little more creative, and
youll undoubtedly need to spend
time educating those around you.
But its well worth the time and
energy to provide your child with
some of lifes greatest summer
experiences and memories.
You may want to consider summer
camps. Both day and away camps
offer tremendous opportunities
and experiences. There are some
wonderful specialty camps for
celiac kids, but dont feel that your
options are limited to those. Do
you think its too hard because
of your childs diet? Think again
Day Camps/Away Camps
Gluten-Freedom!
Sending your child away to
camp is difcult. Ohdont
misunderstand meits not difcult
because of the diet. Its saying
good-bye thats the hard part!
Whether you choose day camps oraway camps is up to you. From a
dietary standpoint, the concept is
the same. You may want to take
all the worry out of it and send
your child to a camp specially
designed for celiac kids. Three
are listed at the end of this article.
But dont think youre limited to
specialty camps. You can send
them to any camp if you keep
a few important things in mind:
Educate the counselors/
cooks in advance.
If possible, meet with
the head counselor in person
to discuss your childs dietary
requirements. Ideally, you
should meet with the nutritiona
director or chef, too. Youl
probably be surprised at how
receptive they are. Most
camps are accustomed toaccommodating conditions
such as diabetes or severe
allergies, and are glad
to learn the intricacies
of the gluten-free diet.
Make sure you give
them plenty of time to make
arrangements for your childs
dietary needs. Meet severa
weeks in advance so they can
When BattlingBoredom ConsiderCamps for YourGluten-Free LittleOneBeing gluten-free shouldntchange your summer plans By Danna Korn
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plan, prepare, understand, and
adapt menus. Remember to
discuss preparation techniques,
so they understand how to
avoid cross-contamination
during preparation and serving.
Send reference
information.
Make sure the
counselors and cooks have
printed copies of safe and
forbidden food lists. They can
be found at www.Celiac.com,
or send them with a copy
of Kids with Celiac Disease.
These resources will be
important if there are questions
about ingredients or specialtreats, and if they take the
time to read more about celiac
disease, you will have educated
someone on the subject,
and that is also important.
Make sure your child
understands his diet.
If youve read Kids with
Celiac Disease or heard me
speak, you know that Im a
downright nag when it comes
to giving your child control of
his diet. Its crucial! But in thiscase, its also key to ensuring
a safe and enjoyable camp
experience. Remember, if you
dont give your child control of
his diet, his diet may control him.
Send food.
Dont rely upon the
camp to provide specialty
gluten-free foods like bread
and pasta. Theyre expensiveand difcult to get, but more
importantly, its not up to others
to accommodate your childs
diet (another nagging point
of mine). Be sure to send
mixes for cookies, brownies,
and other treats, if they have
the facilities to prepare them.
These days, the specialty
mixes you can buy are so good
that your childs treats are
likely to be the hit of the camp.
More than simply a great way to
beat the summertime boredom
blues, sending your child to
camp can be a huge growing-up
experience. Ohand the kids
will do some growing up, too!
Danna Korn is the author of Kids
with Celiac Disease: A Family
Guide to Raising Happy, Healthy,
Gluten-Free Children. It is available
at www.GlutenFreeMall.com , or a most libraries. For general advice
on travel, eating at restaurants, and
raising your happy, healthy, gluten-
free kids, pick up a copy of her book.
Celiac Kids Camps, continued
Celiac Kids Camps in the United States
West: Gluten Intolerance Group Kids Camp, Camp Stealth. Hosted
by the GIG (Gluten Intolerance Group), the camp is held this year intwo sessions, August 2-5 and August 6-9, at Camp Fires Camp Stealth on
Vashon Island, Washington. GIG Kids Camp is a mainstream camping
experience. Celiac kids attend camp with nearly 300 other kids, so they
experience the camp as any other kid would, but they have a gluten-
free buddy in their cabin, and the GIG staff does all the cooking for
celiac kids in a separate kitchen. A diabetes care team is also available to
support those with diabetes and celiac disease. Scholarships are available
through GIG. For more information, contact GIG at (206) 246-6652 or
send an e-mail to gig@gluten.net.
Midwest: Bens Friends Camp. Hosted by Friends of Celiac Disease Research, Bens F r i e n d sCamp will take place August 6-9 at Camp Courage near Maple Lake, Minnesota. With 305 acres of lakeshore, woods, and
elds, Camp Courage provides a supervised summer-camp experience with swimming, water skiing, tubing, canoeing,
sailing, shing, hiking, and wagon rides. All foods are gluten-free. For information on Bens Friends Camp, call Friends of
Celiac Disease Research at (414) 540-6679 or send an e-mail to friends@aero.net.
East: Camp Celiac. Hosted by the Celiac Support Group for Children in Massachusetts, Camp Celiac will be August
11-16 this year. The camp is held at Camp Aldersgate in North Scituate, Rhode Island. Filled with outdoor adventures
including high and low ropes, canoeing, and dancing, the entire camp is dedicated to gluten-free kids. For more
information, contact Celiac Support Group for Children, (508) 399-6229, or go to http://members.cox.net/nowheat.
6 Scott-Free Summer 2002 Subscribe at www.Celiac.com
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For many years GlutenIntolerance Group (GIG) hasadvocated on behalf of persons
with celiac disease. Advocacy
can include the increase of
celiac disease awareness, the
improvement of knowledge and
educational materials distributed
by any number of organizations,
sitting on boards and committeesof coalitions on behalf of persons
with celiac disease or dermatitis
herpetaformis, and ghting to
pass legislation that will improve
the quality of life for persons with
gluten intolerance.
Advocacy is important work. It
takes skill and the desire to work as
a team. At times the work can also
be slow and frustrating. According
to Kay Holcombes presentation at
the 2002 GIG Annual Education
Conference in Winston-Salem,
North Carolina, anyone can learn
to be an effective advocate. Ms.
Holcombe is a lobbyist with Policy
Directions, Inc. in Washington DC.
She has years of health care and
label reform experience. At the
conference Ms. Holcombe offered
the following advice for how to
become an effective advocate:
1) Keep your agenda short
and to the point When you
advocate you should have no
more than three agenda items
or points to cover. Know what
they are, what you want, and
how you are going to get your
message across. When you
try to make too many points
during a presentation it can
lose its power and inuence.
2) Be knowledgeable about
the issue It is important
to thoroughly understand an
issue before you discuss it
with your congressperson. If
you do not understand the
issue well enough you cannot
answer questions about it orunderstand how it will impact
people. The last thing you
want to do is to lose your
congresspersons respect
because do not know what
you are talking about or are
confused.
3) Be honest The rule here is
do not try to mislead them.
Their staff will do extensive
research and will know if you
are being less than honest.4) Have a consistent message
Nothing can hurt your cause
more than to have several
people who advocate it but do
not say the same thing about it.
Everyone must use the same
words in the same manner.
The message should be
short, simple and consistent.
Even slight deviations in your
message could convey torepresentatives that you are
not united. Everyone must
Speak with One Voice.
Ms. Holcombe also advised that
success in advocacy work is
often measured in small victories,
and not necessarily in an all-out
victory. A good example of this
is the ingredient label reform
bill currently being considered
by congress. The original bill
required that seven major allergens
(including wheat) be clearly labeled
on all food products. Through an
extensive letter writing campaign,
partnerships with other inuentia
groups and expert testimony,
additional language was added
to the bill so that it also included
"other grains containing gluten
(rye, barley, oats and triticale)."
This was a great victory for us
even if the bill does not ultimately
pass. We got them to understand
that gluten in food is an important
issue for many people.
Other celiac organizations
have also joined GIG to do
advocacy work. Currently most
of our advocacy work is nationain scope, but we also work on
state issues. To "speak with one
voice" in order to be effective
advocates is an important lesson
that provides celiac organizations
in the U.S. with an opportunity to
show unity for a common cause.
While not always an easy task, it is
an important goal that will benet
all persons with gluten intolerance.
To learn more about the advocacy
efforts of GIG contact us at
info@gluten.net or www.gluten.net.
We are currently working on
national issues that could affect
people with gluten intolerance in
the following areas: quality of life,
extra cost of food reimbursement,
product labeling, research,
professional and public awareness
and education, and restaurant
regulations.
Cynthia Kupper, RD, CD, is the
Executive Director of Gluten
Intolerance Group, a national
support group for people with gluten
intolerance and/or celiac disease
For more information about the
GIG go to: www.gluten.net.
Advocating on Behalfof Persons with CeliacDisease Doing It WellBy Cynthia Kupper, RD, CD
Scott-Free Summer 2002 Subscribe at www.Celiac.com 7
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Summary of the Pathogenesis
and Epidemiology of Celiac
Disease Clinical Symposium
sponsored by the American
Gastroenterological Association
at the Digestive Disease Week
international conference, San
Francisco, May 22, 2002.
Dr. Thomas T. MacDonaldof the University ofSouthampton (UK) School of
Medicine discussed new insights
into the pathogenesis of celiac
disease and the role that the
DQ2 (gene) molecule plays in
controlling the T-cells of the small
intestinal mucosa to produce
the lesion or at mucosa. He
explained that the lesion is
created when the T-cell immune
response in the gut wall results
in changes in the gut shape on
a microscopic level from tall villi
and short crypts to a at mucosa
with an increase in mucosa
thickness. Although it was once
believed that the damaged gut
would quickly return to its normal
shape on a gluten-free diet, Dr.
MacDonald stated that the at
mucosa appears to be a stable
structure. It may therefore takea celiac patient a long time to get
better due to the length of time it
takes for the gut to revert back to
its normal shape.
Dr. MacDonald explained that
gliadin peptides associate with
DQ2 and DQ8 HLA molecules and
put themselves into the grooves
so that they are seen by the T-
cells. Researchers now believe
that Tissue Transglutaminase (tTg)
alters the gliadin peptide so that it
binds to DQ2. Once bound to the
HLA, the altered gliadin peptide
controls the T-cell response.
Dr. MacDonald also described the
case of a woman with cancer who
was treatedwith interferon
(IFN). The IFN-
alpha used to
treat her cancer
may have
triggered her
case of clinical
celiac disease.
IFN-alpha can
stimulate T-
cells and a viral
infection could
activate IFN-
alpha.
Dr. Alessio Fasano, Co-Director of
the University of Maryland Center
for Celiac Research, discussed
the prevalence of celiac disease
on a local and worldwide scale.
Dr. Fasano said that in the 1970s,
celiac disease was thought to be
limited to the pediatric population,but since 1998 there has been a
surge of adult cases. He believes
that adult celiac disease in the
U.S. has been overlooked due
to the fact that adults tend to
present more atypical symptoms.
Also, pathologists need to be
better trained to not overlook
the majority of patients with only
partial villous atrophy. He believes
that in the vast majority of cases
a person with celiac disease wil
not see a gastroenterologist, so
other physicians and specialists
need to have a heightened
awareness of the disease.
On a worldwide scale Dr. Fasano
stated that the overall prevalenceof celiac disease is about 1 in
266, on which he commented:
"on a global scale, this is by far
the most frequent genetic disease
of human kind."
Dr. Ciaran Kelly, of the Beth
Israel Deaconess Medica
Center (Boston), had interesting
insights into both celiac disease
and refractory sprue. Dr. Kelly
explained that hisresponsibility when
seeing a patient with
possible refractory
sprue is to rst conrm
that the patient really
has celiac disease and
that they are adhering
to a gluten-free diet.
Dr. Kelly explained that
some patients would
prefer an iron shotthan have to adhere to
the diet. Differences
from patient to patient
in their sensitivity to gluten can
also affect their adherence to the
diet.
According to Dr. Kelly, in celiac
disease the lamina propria
lymphocytes are stimulated by
gluten to mediate the disease,
whereas in refractory sprue,
intraepithelial lymphocytes no
longer require gluten to cause
damage. Essentially "theyre on
auto-pilot," but he emphasizes
that refractory sprue is a rare
disease and doctors should refer
patients to knowledgeable and
competent dieticians for dietary
management.
The Most FrequentGenetic Disease ofHuman KindBy Laura Yick
"on a global scale, this is by far themost frequentg e n e t i cdisease of
human kind"
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9/16
Dr. Kelly said that patients who
adhere to a gluten-free diet but
do not respond to it should also
be evaluated for other disorders
that can masquerade as celiac
disease, especially if the patient
is IgA endomysial antibody
(EmA) negative or HLA DQ2 orDQ8 negative. Not every at
mucosa is celiac disease, but
could instead be a differential
diagnosis such as cows milk
protein intolerance. Other
unusual immunological disorders
could also be mistaken for celiac
disease. Doctors should consider
these if the patients IgA EmA or
tTg antibody tests were negative
at diagnosis. HLA typing should
also be considered in this case,
after other possibilities have been
eliminated and the patient is not
responding to a gluten-free diet.
If a patients HLA DQ2/DQ8 test
is negative the likelihood that
they have celiac disease is much
lower. He advised that antibody
blood tests for follow-up were
helpful but not to be relied upon.
Dr. Kelly also emphasized thatpatients are being seen more
frequently who have subtle
manifestations of celiac disease
and who were previously
diagnosed or misdiagnosed with
irritable bowel syndrome and
other disorders. Some patients
with celiac disease may show
improvement in their biopsy
and blood test results, but their
symptoms may still persist. Heemphasized that doctors need
to be aware that just because a
patient has celiac disease it does
not mean that they do not also
have another disorder.
Laura Yick was recently diagnosed
with celiac disease and resides in
California.
DDWConference, continued
Ihave been accused of manythings in my lifetimenamelytalking too much, being overly
protective, being the ultimate
caretakerbut the accusation I
am glad to own is "you never miss
an opportunity to talk about celiac
disease". How fortunate I am to
be so passionate about something
and to be able to do something with
that passion. Everyone who has
traveled the road to diagnosis ontheir own or with a family member
can understand its frustrations.
Everyday I talk with people about
celiac disease and the delays that
most people face when getting
diagnosed, about the intricacies
of the gluten-free lifestyle, and
about how wonderful life is again
thanks to their discovery. I feel
so privileged to be in a position
to educate and enlighten peoplewith celiac disease and dermatitis
herpetiformis.
One of the primary goals of the
Celiac Disease Foundation (CDF)
is heightening the awareness
of celiac disease in the medical
community, with an emphasis in
Southern California where the
projected population of people
with celiac disease is so great.
CDF has an outstanding medical
advisory board that shares
our goal and generously gives
their time and expertise to our
programs. A past goal of the CDF
was to present a clear and positive
directive about the gluten-free
diet. We accomplished this by
partnering with our colleagues,
Gluten Intolerance Group and
publishing the "Quick Start
Diet Guide," which is now in
its third revision. Each of our
organizations is so pleased with
the positive response from the
entire celiac community regarding
this partnership that we are
currently developing additiona
information together.
The variety of gluten-free vendors
has grown tremendously over
the past ve years products
are available in health food
and specialty stores as well as
supermarkets throughout the
United States. There are even
two walk-in stores in this country
devoted exclusively to gluten-free
foods. The ability to get products
delivered directly to our homes
really makes things easier. We
now have an Italian restaurant In
Glendale, California that prepares
and serves gluten-free pizza and
pasta. What a treat to sit in a
restaurant and be served your
very own loaf of gluten-free bread.
So, little by little, with each of us
talking about celiac disease to
our physicians, friends, families,
grocers and restaurateurs, we
are making our lives easier and
helping the lives of people yet
to discover that they have celiac
disease.
Scott-Free newsletter is yet
another opportunity to do what I
love and do best. We should each
take any opportunity we can to
enlighten just one more person
about celiac disease!
Elaine Monarch is the founder
and Director of the Celiac Disease
Foundation in Los Angeles,
California. More information about
the CDF can be found on their
Web site: http://www.celiac.org/
or by sending them an e-mail:
cdf@celiac.org.
Enlighten JustOne More!By Elaine Monarch
Scott-Free Summer 2002 Subscribe at www.Celiac.com 9
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10/16
Agood basic cake recipe is alot like a little black dress.Whether you dress it up or
leave it plain, its right for any
occasion.
One Recipe; Many Choices
This basic cake recipe can beserved in many different ways.
Of course, its great with no
adornmentperhaps just a
sprinkle of powdered sugar
for old-fashioned goodness.
But there are many, many
other ways to use this
versatile recipe.
For example, bake cupcakes
for your childs next school
activity. In fact, make anextra batch and freeze
them. Next time your child
announces at 9 PM that he
or she has to take treats to
school the next day, quickly
defrost them, slather on your
favorite frosting and youre
ready to go!
Need a birthday cake? This
recipe can be a yellow cake orwhite cakesheet cake or layer
cake. Add food coloring for a
festive touch. When I was a
child, my mother used to tint the
batter either pink or blue, bake
it in a Bundt pan, slice it in half
cross-wise and insert a layer
of ice cream. She then quickly
frosted it with whipped cream
and popped it back in the freezer.
I thought it was pretty cool!
Dressing It Up
One of my favorite desserts from
this recipe is Pineapple Upside-
Down Cake or, as youll see in
the photo belowCaramelized
Pear Torte. It works best bakedin a 10-inch cast-iron skillet or a
10-inch pan specially designed
for upside-down cakes. Top this
treat with a dollop of whipped
cream and youre in heaven.
In the summertime when
strawberries are plentiful, usethis recipe as the "shortcake"
in Strawberry Shortcake. For a
decidedly festive effect, bake the
little individual cakes in mini-cake
baking pans (such as mini-Bundts
or mini-angel food cakes). Follow
the manufacturers directions for
best results.
These little cakes are so simple,
yet guaranteed to impress
your guests no matter how you
serve them. They look lovely
sitting on a tiered rack of festive
plates. Sometimes I frost them,
sometimes I dust them with a
white cloud of powdered sugar,
and sometimes I make a glaze
of melted preserves for a pretty,
shiny effect. Nestle a few fresh
strawberries or raspberries
among themplus a few mint
springs for colorand theyre
special, regardless of whats in
them.
One of the nice things about this
recipe is that its so good, your
family and friends wont know
or carethat its gluten-free.
And, if you have sensitivities toother ingredients (such as eggs),
see my two booksSpecial Diet
Solutions or Special Diet
Celebrationsfor instructions
on substitutes, including
using other sweeteners
besides whites sugar.
In fact, I used a similar basic
cake recipe for the grooms
cake at my sons wedding.
See Special Diet Celebrations
for wedding cake instructions.
No one knewor caredthat
is was gluten-free! It was
delicious!
Follow the easy directions on
the next page for making this
simple classic into a winner at
your house!
Carol Fenster, Ph.D. is the authorof several outstanding gluten-
free cookbooks, including:
Special Diet Celebrations
Special Diet Solutions
Wheat-Free Recipes & Menus
Her books can be ordered at:
http://www.GlutenFreeMall.com
or at:
http://www.SavoryPalate.com
Plain and Fancy:The Many Livesof a Basic Cake
RecipeBy Carol Fenster, Ph.D.
Basic Cake takes many forms. Here it
becomes a Caramelized Pear Torte.
10 Scott-Free Summer 2002 Subscribe at www.Celiac.com
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11/16
Carol Fensters Basic CakeReprinted with permission from by Carol Fenster, Ph.D. of Savory Palate Press
(800) 741-5418 www.savorypalate.com)
Copyright 2001
1/3 cup unsalted butter or margarine1 cup sugar
2 large eggs, beaten (or 3 egg whites for white cake)2 teaspoons grated lemon peel1 cup white or brown rice our1/3 cup potato starch2 tablespoons tapioca our1 teaspoon xanthan gum teaspoon baking powder teaspoon baking soda1/3 teaspoon salt cup buttermilk (or 1 tablespoon lemon juice plusenough non-dairy milk to equal cup)
1 teaspoon vanilla extract
1. Preheat oven to 325F. Prepare pans, as directed below.2. Using electric mixer and large mixer bowl, cream together butter and sugar on medium speed until
light and uffy. Mix in eggs on low speed until blended. Add grated lemon peel.3. In medium bowl, sift together ours, xanthan gum, baking powder, baking soda, and salt. In another
medium bowl, combine buttermilk and vanilla. On low speed, beat dry ingredients into buttermixture, alternating with buttermilk beginning and ending with dry ingredients. Mix just untilcombined. Spoon the batter into prepared pan(s).
4. Bake as directed below.
Cupcakes: Grease pan or use paper liners in standard 12-mufn tin. Bake 12 cupcakes 20-25minutes. Serves 12.
Layer Cake: Grease 9-inch round nonstick pan or two 8-inch round nonstick pans and line withwaxed paper or parchment paper, then grease again. Bake 9-inch pan 35-40 minutes; 8-inchround pans 25-30 minutes. Cool on wire rack. Serves 12.
Sheet Cake: Grease 11 x 7-inch pan. Line with waxed paper or parchment paper if you plan toremove cake from pan before frosting. Bake 25-30 minutes. Serves 12.
Pineapple Upside Down Cake: Grease 10-inch pie plate or skillet (or special pan designed forupside-down cake). Evenly sprinkle cup brown sugar over bottom of greased 10-inch pan.Arrange pineapple slices with cherries in center of each circle. Pour cake batter evenly on top.Bake 40-45 minutes or until top springs back when touched. Cool 5 minutes, then invert onto
serving plate. Serves 12. Caramelized Pear Torte: In 10-inch cast iron skillet sprayed with cooking spray, combine cup
brown sugar and 2 tablespoons water. Bring to simmer over low heat, swirling pan occasionally,until sugar dissolves. Cook for another minute, gently swirling pan if sugar is coloring unevenly.Remove from heat. Let cool for 10 minutes. Mixture will rm slightly as it cools. Wash and peel 3rm, ripe pears. Cut in half, lengthwise; then cut in quarters. Remove core from each piece. Cuteach quarter into 3 uniform-sized wedges. Arrange pears in pinwheel design, as close togetheras possible, in caramel. Pour cake batter evenly on top. Bake 40-45 minutes or until top springsback when touched. Cool 5 minutes, then invert onto serving plate. Serves 12.
This is the cake that Carol made for her
sons wedding using this recipe.
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12/16
What was your rst reactionwhen your doctor toldyou that anything containing
gluten had to be eliminated from
your diet? After you stopped
screaming, But I HAVE to
have my pizza! did you begin
to panic? Know thisthere is
almost NOTHING that you usedto eat before being diagnosed
that you cannot eat now; you just
have to learn to make it a little
differently.
If you dont know how to do
something it can seem difcult at
rst, but with a little experience
it becomes easy. This same
principle applies to the multitude
of combinations of the variousalternative ours used in gluten-
free baking. The basic gluten-
free our mixture consists of
2 cups rice our, 1 cup potato
starch our, and 1 cup tapioca
our. This combination may be
used to replace wheat our in
most of your recipes. However,
there are as many combinations
of ours as you have imagination,
each serving a different purpose.Do you want your cakes to be
lighter? Add a little bean our to
your mixture (not too much or it
will leave an aftertaste). Garbanzo
and/or mung bean ours are
excellent for this purpose. Want
to make bread? Make a our
mixture with mostly potato starch
our, tapioca our and cornstarch.
If you can nd the elusive sweet
potato our (sold at most Asian
markets), add it to your cookie
our mixture to improve its
texture. Each type of our has its
own unique properties and taste,
and if you nd a combination of
ours that you really like, sift large
amounts together, spoon it into
freezer bags, and freeze themuntil needed. This will put an end
to you having to drag out all of the
different bags and boxes of ours
each time you want to bake.
For those new to the gluten-free
diet you will notice that when you
bite into a mufn or cookie it may
fall apart. Alternative ours do
not bind as well as wheat our,
so it is necessary to add a binderto them. Do not be intimidated
by the name xanthan gum. It is
a white powder that is usually
packaged in a small pouch and
can be found at most health food
stores. Add a little xanthan gum
to a recipe to prevent your baked
goods from crumbling. Guar gum
may also be used in place of the
xanthan gum, but in some people
it can have a laxative effect.
Unavored gelatin may also be
added as a binder in place of the
gums; just be sure to use twice as
much of it in the recipe to replace
the gum.
You will nd that the alternative
ours are heavier and dont have
as much taste as wheat our. Not
to worry - add twice the amount
of baking soda or baking powder
called for in the wheat version
of the recipe. You can also
double the amount of avoring
(vanilla, almond, etc.). Use
your imagination and add extra
ingredients that will enhance the
tastetoasted nuts or coconut,
chocolate pieces, Kahlua, driedfruits, fresh fruits, etc.
Many people with CD also have
other dietary concerns, such
as high cholesterol, high blood
pressure, lactose intolerance,
casein-free, low or no sugar,
allergies to yeast, corn, soy,
berries, rice, nuts, eggs, etc. Even
with other dietary restrictions,
you can usually nd alternativemethods of preparation for most
foods. The trick is to recreate
the original taste and texture
when you substitute ingredients.
For example, in place of cane
sugar you can use date sugar,
beet sugar, fructose, canned fruit
packed in juice, unsweetened
applesauce, a jar of baby strained
prunes, shredded apples, mashed
bananas or pure fruit juices.
Toasting unsweetened coconut
brings out the natural oils and wil
add a wonderful toasty sweetness
to a baked product. If you need
to limit your salt intake use herbs
(lots of them!) as a replacement.
Adding a lot of chopped celery to
soups and stews will alleviate the
need to add so much salt.
Eggs add moisture and act as a
binder in a baked product. If you
cannot have them you can use
one of the following replacement
recipes for each 1 to 2 eggs
called for in the recipe:
1 teaspoon baking powder
1 Tablespoon liquid, and 1
Tablespoon vinegar
1 teaspoon yeast dissolved in
Cornbread, Cakes,Cookies, Crusts- Eat and Enjoy
a Few Ingredients! By Connie Sarros
12 Scott-Free Summer 2002 Subscribe at www.Celiac.com
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cup warm water
1 Tablespoons water, 1
Tablespoons oil, 1 teaspoon
GF baking powder
1 packet unavored gelatin, 2
Tablespoons warm water (Do
not mix until ready to use.)
cup soft silken tofu and teaspoon baking soda per 1
cup of our called for in the
recipe
3 Tablespoons applesauce
plus 3 teaspoons powdered
egg replacer
If you cannot tolerate rice,
replace the rice our in the baking
mixtures with potato starch our.
For casein-free diets, soy, rice,or coconut milk may be used as
replacements for whole milk. If
you want to thicken gravy and
cant use cornstarch, use potato
our (not to be confused with
potato starch our).
For those who have to watch their
cholesterol, use oil (preferably
olive oil) in place of butter.
Cholesterol is essential to life
and is a necessary part of our
cell structure. The human body
makes an ample amount, so we do
not need to consume additionalcholesterol. Cholesterol is only
found in foods of animal origin
(meat, poultry, sh, eggs, and
dairy products). Do not confuse
this with "fat". While plants have
zero cholesterol, they may be very
high in fat content (such as palm
and coconut oils).
There are always ingredient
alternatives no matter what yourdietary restrictions are. In most
cases you can still make and
enjoy your favorite foods. Be
condent that the foods you eat
will be as varied and delicious as
those you used to eat before. Life
is good and, with a little extra
planning, there is no need to
stress out about eating. -Enjoy!
Connie Sarros is the author
of several excellent gluten-
free cookbooks that will
soon be available to order a
www.Celiac.com. Her books arealso available as follows:
Wheat-free Gluten-free Dessert
Cookbook:
http://www.glutenfree.homestea
d.com/homepage.html
Wheat-free Gluten-free Reduced
Calorie Cookbook:
http://www.wfgf.homestead.com/
gf.html
Wheat-free Gluten-freeCookbook for Kids and Working
Adults:
http://www.homestead.com/
gfkids/gf.html
Cold Poached Salmon (low fat, low cholesterol, low sodium)
by Connie Sarros
Here is a cool entre for those hot summer days, from the WFGF Reduced Calorie Cookbook.
When cooking salmon, wash well with cold water, then pat dry with paper toweling. With a sharp knife, remove
skin from llets before cooking. The salmon may be poached the night before, then wrapped in plastic wrap and
refrigerated. By eliminating the mayonnaise, this dish will be dairy-free. To serve, place salmon on top of Julienne
Vegetables (recipe on page 42). Slice 4 thin slices of lemon; cut each slice almost in half, leaving one side of the rind
in tact; twist to form an "S" shape, then lay on top of the salmon.
2 cups water
1 cup GF white wine
2 Tablespoons lemon juice
6 bay leaves1/8 teaspoon salt
1/8 teaspoon pepper
4 llets (4 oz. each) salmon
4 teaspoons GF lowfat mayonnaise
12 capers
In a large skillet, combine water, wine, lemon juice, bay leaves, salt and pepper. Bring to a boil. Add llets and
simmer gently about 15 minutes or till opaque and sh akes easily with a fork. Drain salmon, reserving bay leaves,
and cool. Spread 1 teaspoon mayonnaise on top of each llet. To garnish, angle a bay leaf in the center; cluster 3
capers at the base of the leaf.
Eat and Enjoy, continued
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Cherry-Chocolate Charm by Connie Sarros
White chocolate is the secret ingredient that makes this cake so magical. cup butter, softened 1 cup GF our mixture cup buttermilk cup sugar teaspoon salt 1 can GF cherry pie lling
1 egg teaspoon baking soda1/3 cup cocoa 1 Tablespoon light GF rum cup coarsely grated Chocolate Frosting (recipe follows)white chocolate
Cream butter and sugar till uffy. Whip in egg well, then blend in rum. Sift together dry ingredients and add tobutter mixture alternately with buttermilk. Stir in 1 cup of the pie lling and cup of the white chocolate. Pour intogreased 9 inch cake pan and bake at 350 deg. for 30-35 min. or until toothpick inserted in center comes out clean.Cool cake in pan for 10 min., then remove and cool on wire rack. Place cake on serving dish. Frost sides and top ofcake with chocolate frosting. Spoon remaining cherry lling in center of top, then sprinkle with remaining whitechocolate.
Chocolate Frosting
1 oz. unsweetened chocolate 2 Tablespoons milk2 Tablespoons butter 1 cup sifted confectioners sugar Teaspoon GF vanilla
Place chocolate and butter in top of double boiler. Heat over hot water (not boiling) until chocolate is melted. Stir inmilk and sugar until well mixed. Cover and cook for 10 min. Remove from heat and stir in vanilla. Beat until glossy.If too thin, add a little more confectioners sugar. If too thick, add a few drops of milk.
14 Scott-Free Summer 2002 Subscribe at www.Celiac.com
Published quarterly by www.Celiac.com.Edited by Scott Adams.
Scott-Free Columnists and Contributors:
Scott Adams, Founder ofwww.Celiac.comShelley Case, B.Sc., RD, Dietitian, AuthorCarol Fenster, Ph.D., AuthorDanna Korn, Author and Founder of Celiac Kids SupportGroupCynthia Kupper, RD, CD, Executive Director, GlutenIntolerance GroupMichelle Melin-Rogovin, Program Director
The University of Chicago Celiac Disease Programat The University of Chicago Chi ldrens HospitalElaine Monarch, Director of Celiac Disease FoundationConnie Sarros, AuthorLaura Yick, Diagnosed Celiac
Subscribe online at www.Celiac.com.
For more information about Scott-Free, includingquestions about our content or how you can advertise
with us, please e-mail Scott Adams at info@celiac.com.
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