journal of gluten sensitivity 200207 scott free v1 n1 web

8/6/2019 Journal of Gluten Sensitivity 200207 Scott Free V1 N1 Web

1/16

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


2/16

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.

2 Scott-Free Summer 2002 Subscribe at www.Celiac.com


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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.


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.


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

Scott-Free Summer 2002 Subscribe at www.Celiac.com 3

In SouthernCalifornia 8%of Hispanics

tested

positive forceliac disease


4/16

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.


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.


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:[email protected] telephone her at: (773) 702-7593.

Paris Conference, continued

mailto:[email protected]:[email protected]:[email protected]:[email protected]


5/16

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



6/16

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 [email protected].

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 [email protected].

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.

http://www.celiac.com/http://www.glutenfreemall.com/mailto:[email protected]:[email protected]:[email protected]:[email protected]://www.glutenfreemall.com/http://www.celiac.com/


7/16

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

[email protected] 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

mailto:[email protected]://www.gluten.net/http://www.gluten.net/http://www.gluten.net/http://www.gluten.net/mailto:[email protected]


8/16

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"



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:

[email protected].

Enlighten JustOne More!By Elaine Monarch

http://www.celiac.org/mailto:[email protected]:[email protected]://www.celiac.org/


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.



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.

http://www.savorypalate.com/http://www.savorypalate.com/


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



13/16

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

http://www.celiac.com/http://www.glutenfree.homestead.com/homepage.htmlhttp://www.glutenfree.homestead.com/homepage.htmlhttp://www.wfgf.homestead.com/gf.htmlhttp://www.wfgf.homestead.com/gf.htmlhttp://www.homestead.com/gfkids/gf.htmlhttp://www.homestead.com/gfkids/gf.htmlhttp://www.homestead.com/gfkids/gf.htmlhttp://www.homestead.com/gfkids/gf.htmlhttp://www.wfgf.homestead.com/gf.htmlhttp://www.wfgf.homestead.com/gf.htmlhttp://www.glutenfree.homestead.com/homepage.htmlhttp://www.glutenfree.homestead.com/homepage.htmlhttp://www.celiac.com/


14/16

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.


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 [email protected].


15/16 Scott-Free Summer 2002 Subscribe at www.Celiac.com 15


16/16

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