What is celiac disease?
Celiac disease is a lifelong, genetic intolerance
to certain proteins found in the grains wheat, barley and rye. When
ingested by an individual with celiac disease, these proteins trigger
an autoimmune inflammatory response in the small intestine, causing
damage to the absorptive structures called villi. When villi are damaged,
their ability to absorb nutrients (fat, carbohydrate, protein, vitamins
and minerals) is greatly reduced, resulting in compromised nutritional
status and increased risk for diseases of almost every organ system.
In fact, the word “celiac” comes from the Greek word “Koiliakos,” which
means “abdomen” or “hollow” and refers to
the way an individual with celiac disease can eat but remain malnourished
when gluten is present in the diet.
Although most experts agree that individuals with certain genes can
get celiac disease at some point in their lives (see discussion about
HLA DQ2 and DQ8 below), it is not yet understood what triggers the onset
of the disease or when it actually happens. Some research suggests
the following may have an effect: early introduction of gluten-containing
foods to a baby’s diet, puberty, the stress of surgery, illness
or pregnancy, or a stressful occurrence in one’s life. Presently,
there is no cure for the 1 in 133 individuals
who are believed to have celiac disease in the United States, and the
only known treatment is lifelong adherence
to a gluten free diet.
What is Dermatitis Herpetiformis?
This is an itchy, blistering skin condition that is associated with
celiac disease. It is commonly found bilaterally on the buttocks, knees,
elbows, face and scalp. Individuals with the diagnosis of Dermatitis
Herpetiformis can also show similar damage to the small bowel and show
positive response to the gluten free diet.
What are HLA DQ2 and DQ8?
HLA (Human Leukocyte Antigen) is a genetic marker
or “flag” that exists on the surface of each cell in
our bodies. Its function is to help the immune system distinguish
between “self” cells and “invader” cells.
Individuals who have either HLA DQ2 or HLA DQ8 markers are at risk
for developing celiac disease and the presence or absence of this
genetic material can be useful information in diagnosing this disease.
What are the symptoms?
Symptoms of celiac disease may include any of the
following: diarrhea, change in bowel habits, abdominal bloating, failure
to thrive, delayed weight gain and/or growth retardation, skin rash,
discolored teeth, depression, irritability, fatigue, anemia, missed
menstrual periods or joint pain. Some conditions associated with untreated
celiac disease are osteoporosis, Vitamin K deficiency, intestinal
lymphoma, dental enamel defects, infertility and/or miscarriage and
general malnutrition.
How do you get tested?
Initially, a blood test is ordered to determine
if antibodies against gluten are being produced. High levels of antibodies
show increased immune reaction and a strong likelihood for celiac
disease. This suspicion is confirmed by examining the villi via a
small bowel biopsy - a short, minimally invasive procedure usually
done on an out-patient basis.
What are the blood tests I should get?
The Kogan Celiac Center follows a strict protocol
to measure the specific antibodies that are markers
for celiac disease. Of the most sensitive and
specific tests, IgA
tissue transglutaminase (tTG) antibody testing
is ordered, or
IgG tissue transglutaminase antibody testing
when individuals are deficient in IgA responses.
Is testing the same for Dermatitis Herpetisformis? No,
a skin biopsy is used to diagnose this skin condition.
If I have some of the symptoms, should I try going on the gluten
free diet?
No! When gluten is eliminated from the diet, the
villi heal and the results of a biopsy will not be accurate or reliable.
Individuals are advised to wait until they have been positively diagnosed
with celiac disease before going on a gluten free diet.
I have just been diagnosed with celiac disease, should I get
my family tested too?
Yes. Evidence suggests that first-degree relatives
(parents, siblings, and children) have an elevated
risk for celiac disease, as do second-degree relatives
(grandparents, grandchildren, aunts, uncles, cousins) to a lesser extent.
What is gluten and the gluten free diet?
Gluten is a general term for certain proteins that
are found in wheat, barley and rye and are responsible for triggering
the autoimmune reaction that is the hallmark of celiac disease. There
is currently some controversy about whether a similar protein found
in oats causes a similar response. Individuals who follow a gluten
free diet eliminate gluten and all derivatives of it from the food
that they consume.
Grains that are NOT acceptable on the gluten free diet are: wheat (otherwise
known as enkorn, durum, faro, graham, kamut, semolina, spelt), rye,
barley, and triticale (a cross between wheat and rye). Obvious places
for the above grains are breads, pastas, and baked goods but processed
foods can also contain other hidden sources of gluten.
There are many grains and other sources of starch that are acceptable
for anyone following a gluten free diet. The most common are corn, potatoes,
rice and tapioca (sometimes called cassava). Other acceptable grains
and sources of starch are: amaranth, arrowroot, buckwheat, millet, quinoa,
sorghum (sometimes called jowar), sweet potato, taro, teff, and yam.
Sometimes flour is made from beans, legumes and nuts.
If I have celiac disease, do I have to follow the gluten free
diet forever?
At present, there is no treatment for celiac disease
other than strict, lifelong adherence to a gluten free diet. Exposure
to even a small amount of gluten will cause damage to the small intestine
. . . you cannot “grow out of” this disease! Over the course
of time, intentional or non-intentional ingestion of gluten increases
risk for many diseases including but not limited to lymphoma, osteoporosis
and many other complications of malnutrition.
What is the Kogan Celiac Center?
The Kogan Celiac Center of Barnabas Health offers comprehensive testing and treatment for adults
and children with celiac disease. The Center is dedicated to providing
expert early assessment, diagnosis, treatment, education and support
to improve the health and well being of those who have this disease.
Where is the Kogan Celiac Center located?
The Center is located at the Barnabas Health Ambulatory
Care Center, 200 South Orange Avenue, Livingston, New Jersey. For
further information, you may call us at (973) 322-7272.
How does the program work?
The Center offers nutritional counseling, periodic
screenings, and community-based education events and provides comprehensive
information regarding System healthcare professionals.
Our nutritional education program, Celiac Steps to Success, divides
the process of learning how to eat and live gluten free into easy, manageable
steps. Patients meet with a Registered Dietitian at regular intervals
and learn how to implement changes that meet dietary guidelines and
address lifestyle needs. This sequence typically runs over a 6 month
period, after which annual follow up visits are recommended.
Are there support groups for people with celiac disease?
Many national support organizations have local
chapters which host regular support group meetings. The Kogan Celiac
Center also hosts monthly support groups for adults, teens and children.
Please call the Center for more details.
How do the recent changes in labeling laws affect someone following
the gluten free diet?
As of January 1, 2006, the Food Allergen Labeling
and Consumer Protection Act requires manufacturers to provide certain
information about the ingredients they use to make their products. They
must specify in plain English any ingredient that contains protein from
any of the eight major food allergens: milk, eggs, fish, crustacean
shellfish, tree nuts, peanuts, wheat, or soybeans. Consequently, an
individual with Celiac Disease can know very quickly whether a product
contains wheat; note, however, that there is no current requirement
for barley and rye to be mentioned on a product’s label.
This law also required the FDA to further examine gluten as an ingredient
of concern and to make a final ruling regarding the use of the term “gluten
free” on food labels by no later than August 2008. The final ruling
is expected to define “gluten free” as meaning that a product
must have less than a predetermined amount of gluten in it, usually
measured in parts-per-million. Check here for up-to-date information
as this law and the regulation of gluten labeling evolves.
What about alcohol?
It is currently believed that the
gluten protein is too heavy to be transferred to
food or drink during the distillation process. So, distilled alcohol
is considered safe for those following a gluten free diet as long as
no additional colorings or flavorings are added. However, traditional
beer and other malt beverages are made with barley and are not gluten
free – explore online
to find gluten free beer that has been developed
in past years.
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