So ... You're Newly Diagnosed
Stocking a Gluten-Free Pantry
Ideas & Advocacy for "Seasoned
Pros"
Parents with Gluten-Free Kids
Recent News
Resources & Links
So... You're
Newly Diagnosed
Adapting to the gluten-free diet requires some
lifestyle changes. It is crucial to read labels
which are often imprecise, and learn to identify
ingredients that may contain hidden gluten. We've
gathered some resources here to get you started:
A Note from the Celiac Sprue Association:
As a person who has been recently diagnosed with
celiac disease, you may feel that you are the
only person in the world who has this strange
sounding illness or the related skin response,
dermatitis herpetiformis. Actually, there are
millions of us. So, cheer up! You're not alone.
We've been right where you are, and understand
the confusion you may be feeling. We have asked
many of the same questions you're asking and have
found support and encouragement in each other.
The disease can be "controlled" simply
by a change in one's diet - no risky surgeries,
no life-long dependence on expensive medication.
This move to gluten-free living brings a number
of important changes to life. The return to health
and well-being is the greatest among them. And,
best of all, the gluten-free diet is a risk-free
diet! Gluten is not essential to the diet and
its amino acid components are replaced many times
over by other foods. For a person with celiac
disease, living free of wheat, barley, rye and
oats (WBRO) can only result in improved health
and well-being!
So, go ahead and get on with your life! With
proper planning and preparation you can continue
to enjoy traveling, hobbies, work or school without
worrying about ingesting gluten. For the cautious,
there are a host of portable, non-refrigerated
foods that fit easily into a pocket, purse, briefcase
or carry-on bag. Find classic naturally gluten-free
favorites in items such as nuts, raisins, dates,
figs, jerky, fruit roll-ups, rice cakes, potato
chips, hard candy or select specialty treats such
as gluten-free granola bars, gluten-free pretzels,
gluten-free ready to eat cereals, or gluten-free
cookies.
Quick
Start Diet Guide from the Gluten Intolerance Group
and the Celiac Disease Foundation
The
Three Steps of Gluten-Free Self-Management from
the Celiac Sprue Association
go back to top
Stocking
a Gluten-Free Pantry
Gluten proteins are found in wheat, rye, oats
and barley. Be aware that hidden gluten can be
found in some unlikely foods such as: cold cuts,
soups, hard candies, soy sauce, many low or non-fat
products, even licorice and jelly beans.
Gluten is sometimes used as a binder in some pharmaceutical
products and can be the starch in the non-specified
food starch. Others include: modified food starch,
caramel coloring, hydrolyzed or vegetable protein.
You may wish to avoid products where the ingredients
are of questionable origin or are listed as simply
"natural flavorings, flavor extracts, or
spice extracts", as gluten may be used in
processing them.
Most food manufacturers have toll-free customer
service numbers and will gladly check on the source
of these questionable ingredients. Gluten may
also be used as a binder in some pharmaceutical
products. Request clarification from food and
drug manufacturers when necessary. And remember,
until you are sure a product is gluten-free, it's
best not to use it.
The following grains & starches are pantry-perfect:
- Amaranth
- Arrowroot
- Bean
- Buckwheat
- Corn
- Millet
- Nut Flours
- Potato
- Quinoa
- Rice
- Sorghum
- Soy
- Tapioca
- Teff
The following grains contain gluten and are not
allowed:
- Wheat (durum, semolina)
- Rye
- Barley
- Spelt
- Triticale
- Kamut
- Farina
The following ingredients are questionable and
should not be consumed unless you can verify they
do not contain or are derived from prohibited
grains:
- Brown rice syrup (frequently made with barley)
- Caramel color
- Dextrin (usually corn, but may be derived
from wheat)
- Flour or cereal products
- Hydrolyzed vegetable protein (HVP), vegetable
protein, hydrolyzed plant protein (HPP), or
textured vegetable protein (TVP)
- Malt or malt flavoring (usually made from
barley. Okay if made from corn)
- Modified food starch or modified starch
- Mono- & di-glycerides (in dry products
only)
- Natural and artificial flavors
- Soy sauce or soy sauce solids (many soy sauces
contain wheat)
Additional components frequently overlooked that
often contain gluten:
- Breading
- Broth
- Coating mixes
- Communion Wafers
- Croutons
- Imitation bacon
- Imitation seafood
- Marinades
- Pastas
- Processed Meats
- Roux
- Sauces
- Self-basting poultry
- Soup base
- Stuffing
- Thickeners
A
primer on Grains and Flours (Source: the Celiac
Sprue Association)
Unique
Gluten-Free grains
New
News For Your Pantry: Amaranth
Amaranth
Compared to Other Grains
A
List of Mainstream Gluten-Free Products from Celiac.com
go back to top
Ideas &
Advocacy for "Seasoned Pros"
You've been a "celiac" now for what
seems like a long time. Reading labels and living
free of wheat, barley, rye and oats (WBRO) has
become as normal as breathing. The disease and
its requirements no longer occupy the majority
of your time and emotions. Whew! Did you ever
think you'd get to this point? You made it!
As you ponder all that you've come through in
respect to this disease, have you ever considered
sharing your experience with someone else? There
are many new "celiacs" who can benefit
from your successes. There are many medical personnel
who can learn from your experiences. There is
a whole world out there that has never even heard
of celiac disease but needs to know about it.
But, you're thinking, what can I do? Maybe you
can:
- share something positive about the disease
and the diet with a new person;
- have a conversation with the manager of your
local grocery store about why "gluten-free"
is so important to you;
- welcome new physicians with a personal visit
and an information packet on the disease and
the gluten-free diet;
- visit a member of the clergy regarding the
definition for a strict gluten-free diet and
the ramifications of that for communicant members;
- after calling a food processor for ingredient
clarification, write a letter of thanks and
kindly suggest a "celiac-friendly"
way to word their product labels;
- explain to friends or a club group what celiac
disease is and how it is dealt with both at
home and away; or
- brainstorm, plan and follow through on any
idea you may have.
- Commit yourself not only to living gluten-free,
but also to giving and helping and sharing.
Use your knowledge and experiences to uplift
others - it will lift your spirits as well.
Source: Celiac Sprue Association
go back to top
For Parents
with Kids
Everyone thinks they know what it’s like
to be a parent—after all, most people have
parents, and we all pretty much understand the
job description and associated responsibilities
before applying for the position. What I don’t
think any person can ever adequately anticipate
is the intensity of emotions that a parent (bio
or otherwise) experiences, beginning the instant
they make contact with their child. Sure, we all
know we’re going to adore our children,
and we eagerly await every new behavior as their
little personalities emerge and transform. But
as the months and years pass, the intensity of
our feelings for them increases exponentially,
and even the word love, used as a noun or a verb,
doesn’t do those feelings justice.
Undoubtedly that’s why it’s so difficult
for us when we discover that our child has a dietary
restriction that will change his or her life forever.
We don’t want their lives to be harder or
more complicated; we would literally lay down
our lives to protect them from the pain we’re
afraid they’ll experience in having to deal
with this life-altering condition. We’re
flooded with heartache, grief, anger, guilt, and
the many other emotions discussed in the beginning
of this book, but those feelings are multiplied
by infinity, because it’s not our pain,
suffering, or loss, but our child’s. I’m
sure I speak for every parent who has a child
with any health problem when I say that, if we
could, we would assume the condition ourselves
if it would only restore our child’s health
and happiness.
Aha! Therein lies the beauty of this condition.
We can restore our children’s health, and
we can help them to be happy, optimistic, and
well adjusted, regardless of their dietary restrictions.
I’m not in any way diminishing the feelings
of disappointment, fear, or panic that you may
experience. In fact, I believe that raising kids
with a dietary restriction as tough as this one
is much harder than dealing with it as an adult,
and I should know, because I’m “Mom”
to a celiac kid.
We experienced a nightmare before finally arriving
at a diagnosis for our son. It took nine months,
four pediatricians, a pediatric gastroenterologist,
tears galore, and a lot of tenacity to finally
figure out that Tyler had celiac disease. Diagnosed
at the age of 18 months after growing progressively
more lethargic and malnourished, he was what we
know today as a “classic” celiac child,
with the distended abdomen and chronic diarrhea.
With greater awareness of the condition, children
(and adults) with classic symptoms should be diagnosed
more rapidly in the future. Sadly, children who
don’t have classic symptoms, but rather
suffer from atypical symptoms such as constipation,
seizures, neuropathy, or behavioral problems,
may not be diagnosed until later in life, if ever.
If you’re the parent of a child newly
diagnosed with allergies, intolerances, or celiac
disease, it may seem devastating now, and believe
me, I understand. Know that it gets easier, and
that someday your child will be healthier, happier,
and the difficulties you’re experiencing
now may actually present themselves as opportunities
to be thankful for.
More than a decade later, we feel blessed by
Tyler’s condition. (Yes, he does, too!).
For one thing, we know now that his condition
isn’t, as we were told when he was diagnosed,
a rare one. In fact, it’s the most common
genetic condition that we know of, yet most people
aren’t fortunate enough to be diagnosed,
so they suffer the symptoms, as well as the risk
of associated conditions. From a more philosophical
perspective, our entire family feels privileged
to be in a position to help others with this condition.
But enough about us. You’re still feeling
a little lost and could use some help, right?
All of the tips in this book pertain to your child
as well as to adults, but what you really want
to know are things like these:
- My child has a tummy ache; how do I know
if it’s because of gluten?
- How do I handle sending them to school?
- Can I leave them with babysitters?
- How do I deal with birthday and team parties?
- What can I do about peer pressure?
- Can you give me some lunch and car-friendly
snack ideas?
- How do I safely send them to camp?
- How should I talk to teachers and friends
about their condition?
- What are the legal issues and rights of my
child?
I know you have these questions and others,
because I’ve been there myself. I’ve
also talked with thousands of parents who have
been there, too, because I founded and run R.O.C.K.(Raising
Our Celiac Kids) (www.celiackids.com), a national
support group for families of kids with celiac
disease or kids on a wheat-free/gluten-free diet
for any reason. Their needs, issues, concerns,
and challenges are much different than those issues
facing adults on the diet.
You’ll find many ideas about raising happy,
healthy, wheat-free/gluten-free kids in books
like Kids with Celiac Disease: A Family Guide
to Raising Happy, Healthy, Gluten-Free Children,
and Wheat-Free, Worry-Free: The Art of Happy,
Healthy, Gluten-Free Living. We suggest you head
to your library or Amazon to become better equipped
to help your child of any age develop an optimistic
yet realistic approach to dealing with dietary
restrictions and ensure a happy, healthy, wheat-free/gluten-free
future.
Preceding Article Written By Danna Korn, www.glutenfreedom.net
Excerpted and edited from “Wheat-Free, Worry-Free:
The Art of Happy, Healthy, Gluten-Free Living”
by Danna Korn
go back to top
Recent News:
Headlines
from the National Celiac Awareness Campaign
FDA
Supports Food Allergen Labeling Bill (December
19, 2003)
Recurrent
Brief Depression in Celiac Disease (The Journal
of Psychosomatic Research, Dec 2003)
High
Percentage of Celiacs Nonresponsive to Hepatitis
B Vaccine (Celiac.com, Oct 2003)
New
Therapies Designed to Complement or Replace
The Gluten-Free Diet (Science News, June 2003)
University
of Maryland Study Shows Celiac Disease is
More Prevalent in U.S. than Previously Thought
- 1 out of every 133 Americans May Have Celiac
Disease
Learn
How You Can Take Action
The
American Celiac Task Force Legislative Action
Center
go back to top
Resources
& Links
Gluten
Intolerance Group branches and partner groups
Celiac
Sprue Association Chapters
Celiac
Disease Foundation Connections Link
Raising
our Celiac Kids (R.O.C.K.)
Celiac.com
A celiac disease and gluten-free resource since
1995.
Sully's
Living Without - a full-color quarterly magazine
for people with food and chemical sensitivities
Gluten-Free Living - well researched national
newsletter/magazine for the gluten-free community
gfliving@aol.com
St. Johns Celiac Listserv Newsgroup
The Celiac Listserv is a highly recommended newsgroup
for people with Celiac Sprue Disease. The Newsgroup
is sponsored by St. John's Medical Center. The
discussions include the latest scientific research;
information on what food is gluten-free and what
is not; tips on how to eat out; how to cope, cook
and find food!
To subscribe send an e-mail to the following address:
listserv@maelstrom.stjohns.edu
In the body of the letter put the following:
SUB CELIAC followed by your first and last name:
For example SUB CELIAC Bob Jones.
Celiac
Center at Columbia Presbyterian Hospital, NYC
Friends
of Celiac Research
University
of Chicago Celiac Disease Program
University
of Maryland Center for Celiac Research
Children's
Hospital Columbus
go back to top |
