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CELIAC SUPPORT GROUPS
ARE SPRINGING UP NEAR
YOU! |
SOME ESTABLISHED, SOME BRAND NEW |
y
Caterer in the area:
Leave It To Me - Gluten-Free
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Gluten Intolerance Group of
Harrisburg
Co-Chairperson: Linda
L. Weller
E-Mail: HbgGIGrp@att.net
Celiac Disease Support
Group of Gettysburg
Meet at Gettysburg
Hospital
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Celiac Support Group :
Wilkes-Barre Scranton. Pa
Chairperson: Patty
Kupetz
Meet at the Geisinger
Wyoming Valley Hospital. Wilkes-Barre
in the Kistler
Learning Center
E-Mail: k~D552@EPIXnet |
Note to all members: Always
needed, reports on any restaurant where you have a good experience as a celiac. or a
travel experience - also wanted-those GF lists you send for. The response to "Ask a
Parent" was encouraging. Abby needs your input for a new question, and, notice, wants
suggestions for future questions. |
Lehigh
Valley
Support
Group
Covers the Allentown
area.
For information
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We need a
list of
those physicians that we can truly rely on. SO MEMBERS AND
DIETITIANS
-
do you know of a doctor
that you feel is interested in CD, can handle the full spectrum of diagnosis, and, if
possible, have a more long term knowledge of the disease. Members are located in all
directions - in Lancaster, Reading. Allentown, Doylestown, York also New Jersey,
Rochester, NY ,
etc. People, in several states, are often calling and asking
for a doctor familiar with CD. (The newsletter goes to about 23 states)
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I have one to start with
from member Karen Dalrymple - Dr. JoseQh DiAntonio. Gastroenterologist 2999
Princeton Pike, Trenton, NJ 08848 609/882-2299. Karen has been monitored by him for
seven or eight years.
Member Jan Hutton highly
recommends Dr. Mehta (originally from England) at Dupont Children's Hospital,
Wilmington, DE
JoAnn and Danny
Sprung recommend Dr. Aroncbik. G.I. at Pennsylvania Hospital 215/829-356 |
INTRODUCING A
"FIRST" OPENING
CELIAC DISEASE CENTER
AT COLUMBIA UNIVERSITY
CDCC
-
The first celiac center
for adults in the country
DR. PETER GREEN, MD -
Founder and Director
Dr. Green (an outstanding
speaker at our October 2001 meeting) is a gastroenterologist who, for many
years, has been interested in celiac disease and cares for nearly 500
celiac patients. He
is also a leading researcher at Columbia-Presbyterian Medical Center in New York
and several of his papers have recently been published in international journals.
THE CENTER'S GOALS
Comprehensive medical
care for CD patients from diagnosis through follow-up care Coordinate research into clinical
aspects and epidemiology of CD
Provide patient and
physician education |
DR.
GREEN HAS ASSEMBLED THE FOLLOWING SPECIALTIES:
"Dietetics,
hematology, metabolic bone, genetics, pathology, neurology, oncology,
endocrinology
and epidemiology at the Mailman School of Public Health at Columbia.
He
is able to send his patients into these departments knowing the other physicians will
take
celiac disease into consideration as they treat related problems." |
THE CENTER FOR CELIAC DISEASE
"has worked very closely with the Center for Celiac Research (CFCR) at the
University of
Maryland, especially on the prevalence study that was
recently completed. It found that
as many as one in 179 Americans may have celiac disease. That's
well over one million
Americans.
Both institutions will be working closely together on other
projects in the future. The
collaboration will be especially useful because the CFCR
is a pediatric center."
(All the quotes are
from "Gluten-Free Living" - Spring 2002 issue) |
CDCC
PATIENT
EDUCATION DAY PLANNED
in the New
York-Presbyterian Medical Center
FOR NOVEMBER 2, 2002 - 8:30 AM TO 3.:30 PM
A symposium by
experts for patients and interested medical practitioners.
A discussion by world
renowned experts about manifestations of Celiac Disease including Questions and Answers.
They have assembled an
impressive array of experts covering a large range of topics. I am so interested in this
unique opportunity and notice that Dr. Kasarda, our guide over the years, will be one of
the speakers. Ed and I plan to be there. Look for the flyer (in the back) that includes
more information and a registration form.
The $ 50 fee also
covers a breakfast, refreshments and lunch.
PLEASE NOTE: Ignore
the October ,st deadline mentioned They will take registration
up to the meeting. If
you come and pay at the door and you do not participate in the breakfast, the registration
fee will be somewhat less.
!f you have questions,
contact Hal Winfield, RN (phone & Email listed on form)
"Hal Winfield, RN
and Education Program Director for the CDCC, will handle the center's
research projects and
act as study coordinator until more staff come on board:' |
Last issue's question: If your child is of
school age, how do you handle lunch? Is your child self-conscious about eating different
food? What do you pack that your child likes? Do you allow your child to buy lunch? If
there are particular foods that your child loves for lunch, please share the specifics,
including brands, so we can learn from you. Read on for some great ideas! |
From Nancy Artus, Downingtown, PA:
Great question for the first" Ask
a Parent"- it is a never-ending challenge to pack those lunches daily. My celiac
daughter is 11, and was diagnosed at 8. At first, I went to great lengths to be sure to
have a variety of foods for her lunches. I was always baking muffins or breads. Though she
likes these things when they are fresh out of the oven, she doesn't really care for them
in her lunch. I soon learned that her favorite things for lunch are simple: string cheese
(polly-O), applesauce or fruit cup, chips (potato chips, Cooler ranch Doritos, popcorn,
Cracker Jacks, Cheetos) and a GF cookie or rice cereal treat. It is easy and there is
nothing she is embarrassed to eat in front of her peers. Sometimes she likes yogurt
instead of the string cheese, nuts instead of chips, pudding cup for dessert.
We check the school lunch menu, but in
elementary school there is rarely anything on the menu that is safe. Our cafeteria manager
is very nice, and is accustomed to my calls at 7:30 a.m. asking for her to read me the
ingredients for the French fries or chicken salad. Sometimes there will be a Chef salad
that is safe. Fortunately, my daughter prefers it without dressing. I am hoping that you
will hear from some parents that have requested special school lunches on the grounds of
the ADA. I am interested in hearing about their experiences. [Note to other parents out
there: if you have information to share on this subject, please send it on! J |
From Karen Matlack, Doylestown, P A:
Hi, I am an elementary teacher with a
celiac husband, so I am familiar with both sides of this dilemma - how to cook, how to pack lunches, and what to do if someone is
allergic to foods. The most important thing you must do as a parent ofa
celiac sprue child is to inform the school--the nurse, the teacher, and depending on
communication in the school, the cafeteria staff One of the problems with school menus is
that they are usually breaded and starch loaded. I would not allow my own child to
purchase a school lunch because of the lack of nutritional value (but don't try to argue
with the cafeteria staff!!) Each day is an offering of chicken nuggets, chicken patty, pizza, pretzel
and yogurt, French toast sticks, and once in a while a true choice for celiacs--tacos! |
The other problem is when
a birthday is celebrated and a child brings in treats for the class. Parents of allergic
children will usually
ask to be warned in
advance, and then they will send in something that their child can eat. If the teacher
handles this properly, it is not
a problem for anyone, and
is not embarrassing. It is also important that if your school has classroom parties (such
as Halloween) that the room mothers (if you have them) are notified of allergies. I had a
student this year with peanut and nut allergies, so my room mothers were wonderful at
being certain that there were no nuts in any treats for any of our parties. While this is
easier for nut allergies, and more difficult for celiac allergies, you can manage by
having the parents bring in just the items that are OK. You can
help with making your own
cookies or rice treats, having potato chips and com chips instead of pretzels, offering
fiuit instead of cupcakes, etc. I was so pleased with how serious my room mothers were,
that the child in my class was comfortable no matter what! Of course, my students are
third graders, and are well aware of allergies, etc. so it wasn't difficult. If it is
treated as just another part of life, it helps everyone learn more about our individual
differences. |
From Dawn Mondelli:
I have a 5 yr. old with celiac. When he
was in pre-school last year I packed his lunch. Some examples... tuna fish on EnerG
tapioca bread, cheese steak or grilled cheese on cybros rice rolls. I would include
Pamela's chocolate chip cookies (there are a variety to choose from, these are my son's
favorite) EnerG pretzels, Herr's potato chips or a fruit snack ( Farley is gf). When there
was a special event coming up I asked the teacher to notify me ahead of time so I could
include my son. They had chicken mc-nuggets for their Thanksgiving feast last year so, I
cut up chicken tenders, breaded them with Sylvan Border farm's gf/wf all purpose flour and
my son did not feel out of place. |
For his birthday or if he was class leader
which meant he had to bring in cupcakes and distribute them to the class, I would make his
cake gf (usually Pamela's brownie mix) and bring it to Genuardi's pastry section who are
always kind enough to check that their icing is wf/gf and they decorate not only his
birthday cake (for a small fee, I provide the gf cake) but match his cupcake to the tray of
cupcakes that I buy for the rest of the class. I bought all wf/gfitems ftom Martindale's
on Baltimore Pike, Springfield, Pa. You receive a 10% discount when ordering items by the
case. |
Thank you to everyone who contributed!
Next issue's question: The boardwalk
down the shore...a Phillies game...the mall...so many of the places we take our kids for
entertainment are packed with food stands, but dealing with a gluten-free diet doesn't
allow for much sponteneity. Have you found celiac-safe food vendors at any of these
places? How have you handled outings so your kids did not have to miss out on the fun of
eating at these venues? Please send your answers to me at bstQrm@comca§t.net (no
attachments please) or fax them to: 215-412-4493. Also needed: your ideas for future
questions. Thank you! |
Ask A Parent
By Abby Schwartz |
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(With such a large
membership, occasionally someone is missed and not entered into the mailing list If your
newsletter does not arrive (Oct, March, July), call me and I will check it for you. A one
time newsletter mailing - including paper,
envelopes, labels, stamps and copying - costs: $2000.00)
As has been
explained in the past, the membership fee is $20.00 plus any extra amount you feel to donate. The
volume of renewals plus the extra donations have kept us out of the red for
the last 22 years. The membership, since the cuts, is back up to 610 and climbing almost
daily. YOUR loyalty makes this outreach possible. As for donations, that
is left up to the individual. Whether it is one dollar or fifty dollars, it keeps us
afloat. |
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The Center For
Celiac Research at the University of Maryland Medical School in Baltimore, MD. Since then
there was a donation of $ 100.00 sent in memory of Jim Scheder.
We now have a check to go for $500 (the United Way Giving so far this year has totaled
$451.00 and we will round it out to $500). Add these two items and we
have a grand total of $4325.00 given to the screening study. For those of
you giving through work, that is something to be proud of. As mentioned in the
past, all donations that come through the United Fund to the support group will go
to the research center in Baltimore. It should be noted that the
international walk for this study last May brought in a substantial amount and
Dr. Fasano told me it will help the center to do some further research.
Many of you cooperated with that effort and it was very successful. |
other information.
A
reminder: that card can also be found in the I £II edition of the
hand book
"Food/Medication Interactions" for nurses and dietitians - page 349.}
As a speaker Saturday
morning, Nancy Patin Falin's topic was "A basic look at the gluten-free diet:' Her
list of "Nutritious Foods to Keep on Hand for 'On The Run'" as well as
her valuable list of GF liquid supplements, drinks and powders, etc. are both to be
found elsewhere in here.
THOSE RESTAURANT REVUES
To those hesitant to
eat out, these fascinating member reports in here should give a big boost right out
the front door to find a favorite restaurant. With the restaurant card in hand, they are blithely
eating out here and there and everywhere (and two of them are rather new celiacs).
Know what tickles me? Many chefs, scattered in all directions, are getting familiar
with the fact that there are many celiacs out there while so many doctors still do
not have a due. How do I know that? - you might ask! I take phone calls by the
dozens from celiacs everywhere. (Just recently, a doctor at one of our prominent
hospitals told a parent of a celiac patient that his colleagues do not believe in
the GF diet but he is learning differently only because he has a
celiac patient. Many doctors, of course, are still telling people it is rare or sending
them to psychiatrists.) After all these years there are still those same old
bad stories but the encouraging part is that there are more good stories
than we ever had before. Those of you who have been diagnosed without months and years of
problems, count yourself blessed.
Calling all dietitians
and members
STARTING - A LIST OF RELIABLE
DOCTORS
There are very few
doctors that are truly experienced so the list is short at the moment. Our advisor
heads the list because Dr. Anthony DiMarino, Chief of Gastroenterology at Jefferson
Hospital in Philadelphia, has been interested in CD over many years
now. Many of our members that were stymied with their doctors have been referred to him as
well as those needing a diagnosis. All the feedback was extremely positive. I am so
grateful he was willing to be our advisor and the good news is that he will be the
speaker for our March meeting. |
Gluten-Free Living first said yes it is -
now says no it isn't
"To quickly clear things up and simplify your gluten-free life, citric acid is not
an
ingredient that celiacs need to worry about. Here's
why!"
Quotes from
Gluten-Free Living - Summer 2002
"Citric Acid made in
the United States is usually made from corn and consequently is gluten-free.
Citric Acid is produced
through the fermentation of corn, beet sugar, molasses or wheat. A microorganism converts
the sugars found in these sources into citric acid. an additive mainly known for giving
foods a tart taste.
We learned that foods
often contain citric acid from other countries, with European producers more likely than
those in China to use wheat as the starch from which citric acid is fermented.
Does it really matter
which of these carbohydrates is used for fermentation? And the answer to that question is
no. Food scientists and citric acid industry experts agree that citric acid is a highly
purified ingredient unlikely to contain any significant amount of the wheat protein that
is toxic to celiacs."
Manfred Kroger.
professor of food science at the Penna. State Univ. says "it
should not matter to
a celiac what the original source of citric acid is. He said the end product is totally
pure and does not contain gluten. "The gluten molecule is
totally obliterated "
"Donald Kasarda,
PhD, eminent grains chemist who has done research on grains and their relation to celiac
disease, agrees. He said, "I am not an expert on citric
acid, but it seems
likely to me that the purification process for citric acid would
make it safe for
celiac patients regardless of whether or not it was originally fermented from wheat."
"Tom Sciacca, a
scientist and a celiac, who has a specialized interest in unraveling the numbers
associated with the amount of gluten likely to be found in a food, contends it is close
enough to zero to be considered gluten free."
PART OF ANN WHELAN'S
EXCELLENT EDITORIAL
" basically we asked
the wrong question. To put it simply, we asked whether or not citric acid could be derived
from wheat. The answer is yes, especially if it comes from a European country. Wheat might
be fermented to produce citric acid.
The question we
should have then asked is: If it was fermented from wheat, would citric acid contain any
gluten? The answer is no. Frankly this second question did occur to us before we published
the article in the last issue, but we decided not to pursue it in order to save citric
acid from a fate similar to vinegar. Hopefully, we have not accomplished exactly what we
were trying to avoid."
After the issue was
published, we heard from several readers, all suggesting that fermentation should
eliminate any gluten in the wheat source. You'll notice that's "should" not
"would." In the real world, especially scientifically, very little is black and
white.
The decision not to
pursue the second question was mine and I regret not asking it, but not the lesson we
learned. I have long felt we ask the wrong question a lot in the celiac world. This
tendency, of course,
is driven by our need
to stay entirely gluten free.
So we are all tempted
to stop asking questions once we learn that a gluten-containing grain has played some part
in the process of making a food. Instead to going to the next step and asking if there
would be any gluten in the final product. I'm sure there are celiacs who would disagree
with me, but not going to the next step could mean we are making a difficult diet close to
impossible, without any added advantage to our health.
So. we stand
corrected and apologize for any inconveniences. From now on, to the beat of our ability.
we will ask all the right questions!" |
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