CELIAC DISEASE
A HIDDEN EPIDEMIC WORLDWIDE
THE MOST UNDIAGNOSED AND MISDIAGNOSED AUTOIMMUNE DISEASE
THE TIP OF THE ICEBURG
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As a FCS professional, do YOU know the facts?
Why do I care?
● Why should you care?
CELIAC SESSION OBJECTIVES
Participants will gain:
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An ability to take action, armed with knowledge to raise
awareness of Celiac Disease.
An ability to access, use and evaluate current Celiac
Disease information to help raise awareness and curb the
Celiac Disease epidemic.
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An ability to analyze and use Celiac Disease knowledge
both PERSONALLY and PROFESSIONALLY to
advocate for improved detection and CD outcomes.
Sources: Columbia and Johns Hopkins Universities, Mayo and Cleveland Clinics, NFCA, NCF, CD books,
CD publications, research articles AND personal experience with living with Celiac Disease
FACTS ABOUT CELIAC DISEASE
Celiac disease is a genetically based autoimmune disease that is triggered by the
ingestion of gluten – a protein found in wheat, barley and rye
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An estimated 1 in 100-133 Americans has celiac disease, yet 83-99%, (depending on study) are
either undiagnosed or misdiagnosed. 6-10 years is the average time a person “waits” to be
diagnosed. Many wait much longer.
Celiac disease is a hereditary disease, expressed frequently in families carrying the gene.
5-22% of people with celiac disease have an immediate family member who also has the
autoimmune disease. Once removed relatives, too. (Often unaware of it)
When a person with celiac disease eats gluten, it sets off an immune reaction that damages the
villi (hair like projections) in the small intestine and interferes with the absorption of nutrients.
There is no pharmaceutical cure for celiac disease. The only treatment is a strict, lifelong
gluten-free diet. Researchers are working on “a pill”.
Celiac disease was once thought of as a childhood ailment that they would outgrow. It is now
known that the condition affects men and women of all ages and races, and can DEVELOP at
any time, but you are BORN with it. You do not “catch or get it any other way.”
NOT the same as “gluten intolerance.”
CELEBRATE THE DIAGNOSIS
AND A NEW LEASE ON LIFE GOING GLUTEN FREE
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Celiac Disease is a “life changer”--not for the worse,
but for the better, because.....
Celiacs can generally heal themselves by NOT eating
or ingesting products containing wheat, barley or rye
in any form. (foods, medications, some cosmetics,
some sprays, etc.)
Gluten triggers Gliadin which destroys the villi of the
small intestine, resulting in lifelong malabsorption of
vitamins, minerals, and nutrients, leading to many
autoimmune diseases over a lifetime in Celiacs.
MISDIAGNOSIS FREQUENTLY LEADS TO A
LIFETIME OF AUTOIMMUNE DISEASES
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Although it IS possible to diagnosis CD through
testing at birth, as is done in some parts of the
world, in the US most people are diagnosed with
several to many autoimmune diseases over a period
of several years before the correct diagnosis is
made.
The list of diagnosis of other conditions is long and
is still being studied. Many are identified.
The following list IS NOT comprehensive.
CELIAC RELATED DISEASES AND CONDITIONS
Infertility, miscarriage, still birth
Liver Disease
Migraine headaches
Peripheral Neuropathy
Osteoporosis, Osteopenia
Turner's,Williams Syndrome
Type1 (and now type 2 diabetes)
Crohn's, Sjogren's Disease
Lupus, Multiple Sclerosis
Iron Deficiency Anemia
Thyroid Diseases (hypo and hyper)
Autism Spectrum, ADHD
Down Syndrome, other birth defects
Chronic Fatigue, Fibromyalgia
Anxiety, depression, mental illness
Dental Defects, canker sores
Dermatitis Herpetiformis (only in CD)
Irritable Bowel Syndrome
Intestinal and lymphoma cancers+
Menstrual Problems
Bloating and bowel problems
Slow growth in children
WHY ARE SO MANY DISEASES AND CONDITIONS
RELATED TO THE UNDERLYING DISEASE, CELIAC?
From birth onward various amounts of damage along the 22 ft.
long small intestine continue to wear away villi, leading to
malabsorption unequally so various systems are affected,
causing disease and other autoimmune conditions.
The OTHER diseases are generally more commonly tested for
and more obvious in their presentation.
According to my doctor, most doctors are not trained in this
country to look for celiac disease. It has it's own specific tests.
Treatment for celiac is done by the celiac, not by medicine or
by the doctor, other than to follow your progress.
Resistance from those standing to loose money!!! (Many)
WHAT ARE CELIAC SIGNS AND SYMPTOMS
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A 2012 survey found that 35% of people at risk for celiac disease had
no reason to suspect that the symptoms they were experiencing
may be due to undiagnosed celiac disease.
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Classic symptoms include diarrhea, anemia, weight loss or growth
failure (especially in children.)
Non-classic symptoms include constipation, abdominal pain, and
foul-smelling and bulky stools.
Other symptoms include skin rash, unexplained infertility, fatigue,
headaches and nutritional deficiencies.
Many people with undiagnosed celiac disease experience no
symptoms at all. It's common to go 50, 60, 70 years without getting
a proper diagnosis. May have a dozen other diagnosis instead.
Celiac checklist will be used later in the program
HOW IS CELIAC DISEASE DIAGNOSED?
Accurately diagnosing celiac disease can be quite difficult largely because the
symptoms often mimic those of other diseases as mentioned earlier.
The correct blood tests are the first step in a diagnosis of celiac disease. A doctor
must order the correct, specific series of blood tests to measure your body's
response to gluten.
Therefore, you must continue to eat Gluten until you are tested or the antibodies
, up. False negatives are fairly common. Retesting may be needed.
may not show
Recommended blood tests include: Total IgA, IgA-tTG, and IgA-EMA
If IgA is deficient, it is recommended that the IgG/IgA-DGP also be ordered.
At the discretion of the doctor, IgG-AGA can also be ordered.
Genetic testing can tell if the person carries the gene(s). They must to have Celiac.
They test for HLA genetic markers, HLA-DQ2 (95% have) and HLA DQ-8 (5%have)
A biopsy of the villi is the “gold standard” for assessing/diagnosing Celiac Disease.
WHAT MIGHT NEWLY DIAGNOSED
CELIACS EXPECT?
Adjusting to a Celiac diagnosis takes some time
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Sense of loss, fear of unknown, worry are common.
Insecurity, anger, denial, resistance, acceptance
Learning curve steep, lots to learn. Many resources.
Family, others don't understand, appreciate CD.
Healing takes time, patience and persistence.
Your coping style matters (positive, flexible, adaptive)
Mastering the gluten free diet—OK-NOT OK foods
Shopping takes longer and is more expensive. (taxes)
Avoiding cross-contamination at home, a must.
Many non-food items also contain gluten.
Challenges of eating out, away from home.
YOU can heal yourself by lifelong compliance.
A CLOSER LOOK AT CELIAC ADJUSTMENT
Read, read, read and find knowledgeable persons to consult.
Find Resources: National Celiac Awareness Foundation;
Research hospitals, centers; books, Celiac magazines;
celiac support group; reliable online Celiac information
Most people in US know very little or nothing about Celiac
and misinformation abounds. Many believe it to be a “fad.”
(for some, going gluten free may be, but NOT for the Celiac)
“Gluten Intolerance” is not the same as Celiac Disease
and there is no definitive test for it. Celiac Disease is not
an allergy (which is a fast acting reaction to something)
but many people do feel better when they don't eat gluten.
Research has shown gluten has addictive properties.
For Celiac's, it's a lifelong condition requiring NO GLUTEN!
LEARNING TO LIVE AS A CELIAC
The eating learning curve.....
Your toolbox should include.....
An understanding of which grains, ingredients and foods are safe and which are not.
Finding the products you need in stores or online. ASK manager to stock items.
The ability to read and understand labels. Look for the new GF label as of Aug. 2014
Storage, contamination, “oops” issues. Needs careful attention. A trace does matter.
A knowledge of the areas of the GF diet still being researched enabling you to make
educated choices (oats, etc.) Standards vary around the world (US: 20 ppm).
The ability to advocate for GF safety with waiters, hostesses, caterers, school lunch.
Patience—with family, friends and strangers who may or may not cope well with
the GF diet. They don't realize how important it is or HOW GOOD the food tastes.
Keep the focus on EATING HEALTHY, not just on eating gluten free.
SELECTING THE RIGHT GRAINS....
AND......ELIMINATING THE OTHERS
GRAINS TO AVOID
FLOURS AND GRAINS THAT ARE SAFE
Wheat, wheat germ, wheat bran
Rice, all kinds
Rye
Corn
Barley, barley malt
Sorghum
Bulgar
Millett
Couscous
Buckwheat (not a wheat)
Kamut
Quinoa
Einkorn
Amaranth
Semolina
Teff
Triticale
Tapioca, potato, corn flours
KNOWING SAFE GRAINS IS JUST THE STARTING POINT
BASICS OF A GLUTEN FREE DIET from Merck Manual, ADA*
BEVERAGES
YES DRINKS
Carbonated beverages, GF cocoa powder,
pure coffees and teas, most milk products,
fruit drinks, wines, rums, sake, tequila,
vermouth,cognac,vodka from potatoes
or grapes, GF beers, any with the GF seal.
NO DRINKS
Malted milk, milk with cereal additives
drinks made with malt, commercial
chocolate, herbal teas using barley,
alcoholic beverages distilled from
cereal grains such as whiskey, vodka,
gin, beers, ales, malt liquors
BREADS
YES BREADS
Breads and muffins made with safe flours:
arrowroot, corn, tapioca, sorghum, potato,
bean, chickpea, brown and white rice,
buckwheat (pancakes and waffles), all
GF mixes and commercial GF breads,.
rice cakes, GF crackers
FATS
Butter, margarine, pure mayonnaise,
Cooking oils, shortening, olive oil
NO BREADS
Any bread made with wheat, barley,
rye, non-GF oats, durham, semolina,
graham, muffins, pancakes, waffles,
non GF commercial mixes, pretzels
crackers, cornbread, pie crust.
Most commercial salad dressings,
stabilizers, hydrolyzed, wheat germ oil.
Basics of GF diet, continued
CEREALS
YES FOODS
Ready to eat corn and rice cereals,
puffed rice, cream of rice, cornmeal,
grits, popcorn, GF rice noodles,corn,
rice, quinoa, buckwheat,millet,teff
NO FOODS
Any cereal made with wheat, barley
barley malt, smelt, kamut, oats**,
buglar, couscous, semolina,
spelt and other excluded flours
DESSERTS
Custards, puddings made with allowable
flours or starches,gelatin desserts, ice
cream without fillers, add-ins, or flavoring
GF pies, pastries, and GF mixes
Any dessert made with wheat, barley,
rye, commercial cakes and cake mixes,
ice cream, pastries, pies, puddings,
commercial dessert non-GFmixes
SOUPS
Broth or bullion, vegetable and cream
Made from allowable foods, thickened
with corn, potato or tapioca starch
Any soup made with excluded flours
or starches, bullion cubes or powders
made with hydrolyzed vegetable protein
Basics of CD Diet continued....
VEGETABLES
YES FOODS
Any pure vegetable except those prepared with excluded grain products
FRUITS
Any pure fruit or fruit juice
Fillings using GF thickeners
NO FOODS
Any vegetable prepared wtth nonGF breading or thickeners
Any fruit or fruit juice or fruit pie
fillings made with gluten thickeners
MEAT, CHEESE, EGGS
Any plain meat, fish or fowl, except those
Non GF breadings and coatings
excluded natural aged cheese, eggs
processed cheeses and meats,
May use GF labeled products
canned and frozen meats,
bread stuffings, gravies, sauces
any product with hydrolyzed
vegetable protein (HVP)
SWEETS
Any sweets except those made with
Candy, sweets containing wheat
excluded grain products
(licorice, jelly beans) rye, barley or
malt flavorings or sweeteners
MISCELLANEOUS
Salt, spices, herbs, vinegar*,pickles
Hidden ingredients in flavorings
baking chocolate, GF chocolate, olives
syrups, rice malt, bottled meat
sauces, soy sauce, malt extract
MANY LISTS EXIST-COMPARE!
ANY unidentified “food starch”
THINGS LEARNED ABOUT
BUYING, PREPARING, STORING FOOD
Take time and shop carefully. Read all labels and take your food list. ASK.
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Let the grocery store know what you need AND like. Find ones that listen!!
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Store GF food separately and properly. No need to freeze most baked goods.
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Toast or heat baked goods. (softens and tastes better) Bake your own, too.
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Most any dish/food you like can still be made with alternative GF ingredients.
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NOT ALL GF cookbooks and recipes are created equal. Much better now!!
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Most baked goods have a softer dough/consistency than gluten based products.
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A mixture of GF flours works best for most products. (brown rice, sorghum)
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GF pastas come in every shape you want. GF lasagna and pizza are great but
cooking time is shorter and leftovers soften further in refrigerator.
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Fresh fruits and vegetables are always part of the GF diet. Learn new ones!!
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Eat well but mind the amount. There is so much good food! You will be fine!!
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EATING OUT STRATEGIES
EATING AT RESTAURANTS OF ANY KIND
There is a fine line between being obnoxious and being certain you get a
truly gluten free, safe to eat meal. You dare not assume...YOU MUST ASK!
Many servers have no idea what Celiac or gluten-free is. Usually you can tell
by their response or look. Ask if they have a GF menu and/or how an item is
prepared. More restaurants are becoming aware but choices limited, usually.
DO NOT ORDER until you are satisfied the food will be safely prepared GF.
Double check when food comes if you have reason to question. (rice noodles)
Call ahead to find out or look online. If it seems like a good option, call and
ask to be sure and make a reservation if reassured they know GF.
There are GF specialty eateries in some parts of the country. Look online.
Some places let you bring your own pasta, etc., They will fix it for you, but ask
in advance. Neighborhood restaurants may be especially willing to help.
Some parts of the country and the world are much more Celiac aware.
More About Eating Out...OR AWAY FROM HOME
Sauces are a major gluten source in most restaurants. Always ask or request
without sauce, or “naked.”
Read many kinds of cookbooks to learn how certain dishes are made, but still ask
how “that” restaurant prepares it, to be certain. Menu names and descriptions can
be misleading and/or confusing. The more YOU know the safer you will be.
Avoid cross-contamination during preparation which includes: Shared oil pots,
cutting boards, grills and pans, garnishes, fried ingredients added to salads or
dishes, sauces, thickeners, marinates used in preparation.
When a dish is brought with an obvious “mistake” (croutons, other) ask for a NEW
plate. “Picking off” the offender still contaminates the food. Explain why to server.
Rarely is it safe in the US to eat at most fast food restaurant for several reasons.
Always, always, always take something you CAN eat with you, just in case
This is especially true at meetings where you will need to eat meals. Ask for GF.
Keep a positive attitude and persevere. It IS getting better as awareness improves
Check ahead with friends and relatives, kindly letting them know your situation!
Most will try to meet your needs. Offer to bring something you can have to share.
OTHER EATING GLUTEN FREE ISSUES
Hospital stays: If non-emergency, call ahead and speak to nutritionist to set up
GF plan. Remind at check-in. In emergencies,someone must advocate for you.
Travel: Research before you go, asking friends and relatives from area you are
visiting. Check online, especially at tourist destinations and internationally. Take
GF food along for emergencies. Airlines require a GF lead time, if available.
Look for GF cruises and other destinations. Many countries have GF available.
Holidays: It is quite doable to cook your entire holiday meal GF and have
everyone love the food, including yeast rolls and pie!! Practice any new items you
wish to make to know the recipe works. Guests may not even realize it is GF!!
Take a GF dish or two that you will enjoy and share.
Banquets and weddings: Eat or snack ahead of time. Go to a buffet line early
to avoid food contamination by serving utensils being swapped. Ask for a special
meal if that is an option. This is not the time to be obnoxious. Enjoy the event GF.
Party Planning: With the variety of good GF food available, consider your
guests and select things you think they will like. No need to mention it's GF.
Even if they do know, most will enjoy the occasion. Consider an additional nonGF food or two. Never make a “scene” out of being GF.
OTHER PLACES GLUTEN HIDES
THE MEDICINE CABINET.....
Daily vitamins and drugs are often the culprit in nonresponsive patients who
think they are carefully monitoring a gluten free diet.
Prescription Drugs: “Starch” is the universal binder that bind, cover and help
deliver the active ingredients. When the inactive ingredients are not listed,
either ask your pharmacist to verify that it is GF or call the company yourself.
Vitamins, minerals and other supplements: Read the ingredients label and
look for a GF statement. Some now make the claim. As with everything else
about OTC medications, they don't have the same standards policing them.
Call the company. If they seem vague, don't buy or use their brand.
Lotions and “potions”: Unless you ingest them you will not get gluten. Hair
products, skin lotions, creams and most makeup are not eaten, so they are
safe. Check lipsticks by calling the manufacturer since it may not be GF and a
partner with celiac could be affected by kissing, even if you don't have it.
Some household cleaners and sprays may be harmful if inhaled new
research is indicating. This bears watching, as does ALL NEW CELIAC
DISEASE RESEARCH. New information comes out frequently.
FAMILY ISSUES
CHILDREN AND CELIAC DISEASE
Children with celiac must be taught all of these things and more as they learn
to live safely with the disease growing up. How and what they are taught
makes all the difference in successful adjustment and compliance.
Testing at birth would be ideal, but the US doesn't do it yet. If they find out early
in life, they will be healthier long term. They will learn as they grow with guidance.
Parents have a special role in the child's making a good adjustment. Young
children don't understand why they can't have what others have. 0lder children
and youth may not want to “be different” than their friends—but they must be GF.
ALL IN THE FAMILY
Don't forget--Someone else in the hereditary chain also has celiac—even though
they may not know it. Getting others tested is not always easy. Resistance?
The entire family needs to understand and support all members with Celiac!
When compliance is critical EVERYONE needs to help, not undermine.
MYTHS SURROUNDING CELIAC
Myth #1: You can outgrow celiac disease. Although symptoms may disappear,
with proper GF adherance, once a diagnosed celiac you ALWAYS have celiac.
Myth #2: A little bit of gluten now and then won't hurt.
Research indicates it WILL, even in very small amounts. (20+ ppm does damage)
Myth #3: Vinegar contains gluten. Distilled is OK. Only MALT vinegar has gluten.
Myth #4: Distilled alcohol has gluten. Distilling removes gliadin, so it is GF.
Only spirits made from wheat, barley or rye and related flavorings contain gluten
Myth #5: Gluten is absorbed through the skin. Gluten MUST be ingested to
affect the villi of the small intestine. The condition dermatitis hepetiformis that
celiac's may get is caused by eating gluten, not creams or lotions ON the skin.
Myth #6: You can get CD through a blood transfusion. The antibodies found in
blood cannot cause celiac disease in another person.
ANALYZING AND USING CELIAC DISEASE KNOWLEDGE
How can CD knowledge be used PERSONALLY?
Consider your own risk by taking the “Do I have Celiac.org” assessment tool.
IF indicated, talk to your doctor about testing, but be certain she/he is up to
date on celiac by talking about your concerns. Seek another opinion if this
doctor scoffs at testing. Only the correct blood test can start the process.
If another member of your family could benefit from being checked out, work
with the person to try to get them tested.
Keep learning about Celiac Disease in order to share accurate information
when appropriate. We can't share what we don't know—or CAN WE?
How can CD knowledge be used PROFESSIONALLY?
Make it a goal to educate others accurately about the Celiac Epidemic:
In the classroom, in clubs and organizations, churches, conferences.
Especially important is including a unit in secondary and higher
education FCS settings to raise awareness of the hidden epidemic of
Celiac Disease, helping to unmask it for the benefit of future generations.
FINDING CD RESOURCES
A real plethora of DC resources today—but not all are created equal! BEWARE
Reliable Resources
Research hospitals: Columbia and Johns Hopkins Universities; Mayo and
Cleveland Clinics); Celiac Centers: National Celiac Foundation and
Celiac Awareness Foundation; peer reviewed articles; Celiac GF magazines.
Online: FDA, CDC, USDA, ADA,celiac.com, American Celiac Disease Alliance,
Celiac Foundations, Research Hospitals and Clinics, Triumph Dining, etc.
Books: Celiac Disease: A Hidden Epidemic. Peter H.R. Green, M.D.,
Director of the Celiac Disease Center and Rory Jones, Columbia
University, NYC, NY, 2010. (Very educational)
The Gluten Free Bible. Jax Peters Lowell, forward by Anthony DiMarino
St. Martin's Press, NY, NY, 2005 (Very practical and helpful)
Artisanal Gluten Free Cooking. Kelli and Peter Bronski, Workman
Publishing Co., Inc, NY, NY, 2012 (Excellent-Best of the “cookbooks”)
THE CHALLENGE TO Family and
Consumer Science Professionals
Unless FCS professionals care about, understand
and teach about Celiac Disease we will leave out critical
information that could help many individuals and families
improve their health and well-being across the life span.
FCS professionals DO HAVE a great opportunity to
help unmask this worldwide epidemic so future generations
will be aware and knowledgeable about Celiac Disease.
Make a PLAN and TAKE ACTION!
THANK YOU FOR THE IMPORTANT
ROLE YOU WILL PLAY!
Next Steps
IT'S UP TO YOU!