 |
 |
 |
 |
 |
 |
 |
 |
 |
What Is Celiac Disease?
A lifelong digestive disorder, found in individuals who are genetically susceptible, that
results in damage to the small intestine by interfering with the absorption of nutrients. Celiac
Disease (CD) is unique in that a specific food component, gluten, has been identified as the
culprit. Gluten is the common name for the offending proteins in specific cereal grains that
are harmful to persons with CD. These proteins are found in all forms of wheat (including
durum, semolina, spelt, kamut, einkorn, and faro), and related grains, rye, barley, tritcale
and possibly oats. Damage to the mucosal surface of the small intestine is caused by an
immunologically toxic reaction to the ingestion of gluten.
A lifelong digestive disorder, found in individuals who are genetically susceptible, that
results in damage to the small intestine by interfering with the absorption of nutrients. Celiac
Disease (CD) is unique in that a specific food component, gluten, has been identified as the
culprit. Gluten is the common name for the offending proteins in specific cereal grains that
are harmful to persons with CD. These proteins are found in all forms of wheat (including
durum, semolina, spelt, kamut, einkorn, and faro), and related grains, rye, barley, tritcale
and possibly oats. Damage to the mucosal surface of the small intestine is caused by an
immunologically toxic reaction to the ingestion of gluten.
What causes Celiac Disease?
The cause of Celiac Disease, also called celiac sprue, or gluten sensitive enteropathy (GSE), is
unknown. Current research indicates that CD is strongly associated with a group of genes on
Chromosome 6. These genes (HLA class II antigens) are involved in the regulation of the body`s
immune response to the gluten protein fractions
The cause of Celiac Disease, also called celiac sprue, or gluten sensitive enteropathy (GSE), is
unknown. Current research indicates that CD is strongly associated with a group of genes on
Chromosome 6. These genes (HLA class II antigens) are involved in the regulation of the body`s
immune response to the gluten protein fractions
How is Celiac diagnosed?
A person seeking preliminary diagnosis must be consuming gluten. Specific antibody blood tests are
used to identify the possibility of Celiac Disease and are the initial step in screening individuals who are
at risk (first-degree relatives of biopsy diagnosed celiacs). Certain antibodies are produced by the
immune system in response to substances that the body perceived to be threatening, i.e. gluten.
Current research shows that people with CD have higher than normal levels of these antibodies in their
blood. It is recommended that patients with positive antibody tests have a small bowel biopsy to confirm
the diagnosis and assess the degree of mucosal damage. Dermatitis Herpetiformis (DH) is diagnosed
by a biopsy of a skin lesion and staining for IgA in the tissues. More than 85% of DH patients have
small-bowel sensitivity to gluten. An experienced CD/DH pathologist is essential to establish these
diagnoses. The diagnosed celiac should have medical follow-up to monitor the clinical response to the
gluten-free diet.
A person seeking preliminary diagnosis must be consuming gluten. Specific antibody blood tests are
used to identify the possibility of Celiac Disease and are the initial step in screening individuals who are
at risk (first-degree relatives of biopsy diagnosed celiacs). Certain antibodies are produced by the
immune system in response to substances that the body perceived to be threatening, i.e. gluten.
Current research shows that people with CD have higher than normal levels of these antibodies in their
blood. It is recommended that patients with positive antibody tests have a small bowel biopsy to confirm
the diagnosis and assess the degree of mucosal damage. Dermatitis Herpetiformis (DH) is diagnosed
by a biopsy of a skin lesion and staining for IgA in the tissues. More than 85% of DH patients have
small-bowel sensitivity to gluten. An experienced CD/DH pathologist is essential to establish these
diagnoses. The diagnosed celiac should have medical follow-up to monitor the clinical response to the
gluten-free diet.
What are the Symptoms?
Many patients are asymptomatic for years, with the disease becoming active for the first time after
surgery, viral infection, severe emotional stress, or pregnancy and childbirth. CD may appear at any
time in the life of a person with a hereditary pre-disposition. Symptoms of CD are as varied as the
nutritional deficiencies caused by the malabsorption. Infants, toddlers and children may exhibit growth
failure, vomiting, bloated abdomen and behavioral changes. Classic symptoms may include: abdominal
cramping, intestinal gas, distention and bloating chronic diarrhea or constipation (or both) steatorrhea
-- oily stools anemia - unexplained, due to folate, B12, B6, or iron deficiency (or all) weight loss with
large appetite, or weight gain Other symptoms: dental enamel defects osteopenia, osteoporosis bone
or joint pain fatigue, weakness and lack of energy infertility depression Dermatitis Herpetiformis (DH),
is the associated skin condition characterized by blistering, intensely itchy skin. The rash has a
symmetrical distribution and is most frequently found on elbows, knees and buttocks. DH patients can
have gastro-intestinal damage without perceptible symptoms. Many patients are asymptomatic for
years, with the disease becoming active for the first time after surgery, viral infection, severe emotional
stress, or pregnancy and childbirth. CD may appear at any time in the life of a person with a hereditary
pre-disposition. Symptoms of CD are as varied as the nutritional deficiencies caused by the
malabsorption. Infants, toddlers and children may exhibit growth failure, vomiting, bloated abdomen
and behavioral changes. Classic symptoms may include: abdominal cramping, intestinal gas, distention
and bloating chronic diarrhea or constipation (or both) steatorrhea -- oily stools anemia - unexplained,
due to folate, B12, B6, or iron deficiency (or all) weight loss with large appetite, or weight gain Other
symptoms: dental enamel defects osteopenia, osteoporosis bone or joint pain fatigue, weakness and
lack of energy infertility depression Dermatitis Herpetiformis (DH), is the associated skin condition
characterized by blistering, intensely itchy skin. The rash has a symmetrical distribution and is most
frequently found on elbows, knees and buttocks. DH patients can have gastro-intestinal damage
without perceptible symptoms.
How is Celiac treated?
The only treatment for CD/DH is the life-long adherence to gluten-free diet. When gluten is removed
from the diet, the small intestine will start to heal and overall health improved. Medication is normally
not required. Because osteopenic bone disease is common and may be profound in patients with
newly diagnosed Celiac Disease, bone densomitry should be measured in adults at or shortly after
diagnosis. Consult your physician regarding specific nutritional supplementation to correct any
deficiencies. All patients should be monitored by their physician to ensure compliance with, and
response to the gluten-free diet. Dietary compliance decreases the likelihood of osteoporosis,
lymphoma and other associated illnesses. 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. 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.
Potential harmful ingredients include: unidentified starch modified food starch hydrolyzed vegetable
protein-HVP hydrolyzed plant protein-HPP texturized vegetable protein-TVP binders, fillers, excipients,
extenders malt & other natural flavorings Gluten may also be used as a binder in some pharmaceutical
products. Request clarification from food and drug manufacturers when necessary. Alcohol and
vinegar that are properly distilled should not contain any harmful gluten peptides (or prolomines).
Research indicates that the gluten peptide is too large to carry over in the distillation process. This
leaves the resultant liquid gluten-free unless a gluten-containing additive is inserted after the
distillation process. Alcohols and vinegars should be carefully investigated for additives before use.
Malt vinegars are not distilled and therefore are not gluten-free.
What is the role of genetics in Celiac Disease?
Celiac Disease is most commonly found in genetically susceptible Caucasians. Recent studies suggest
that at least 1 in 250 persons in the United States is affected. Many cases go undiagnosed or are
asymptomatic for years. CD occurs in 5 - 15 % of the offspring and siblings of the celiac. In 70% of
identical twin pairs, both twins have the disease. It is suggested that family members be tested.
Labs and Testing: Serological (blood) Testing - Antibodies
Most doctors believe that the specific serologic (blood) tests cannot be used as a positive confirmation
of a diagnosis of celiac disease. However, it most certainly serves as an important screening, and for
many, is proof enough that they should adhere to a gluten-free diet for life.
Sometimes doctors forget to mention this, but it is extremely important that your child be on a
gluten-containing diet for at least three weeks prior to testing. Without gluten in the diet, there will not
be an antibody response and the test will be inconclusive.
It is also important to note that a negative screen does not mean your child isn`t a celiac. Several
factors can affect the results of the screening, and because some of the readings can be subjective,
further testing may be required.
Serological testing is also a good tool after a positive diagnosis of celiac disease. In fact, your child
should be tested annually to make sure his diet is, in fact, 100% gluten-free. Sometimes the blood
screening will reveal elevated antibody levels, and you will discover that something in your child`s diet
that you thought was gluten-free, in fact does contain gluten.
If you want to have a better understanding of the blood tests available for celiac disease, we highly
recommend reading Chapter 22 of Danna Korn`s book, Kids with Celiac Disease.
Have the tests done by a competent lab. The blood can be drawn in the pediatricin`s office, or at a lab
associated with the office. But where the testing is done is extremely important. Make sure the doctor is
directing the lab to send the test to a lab, which has a reputation for conducting a lot of celiac testing.
Also, make sure the lab technician notices the doctor`s directions regarding what lab the blood sample
is to be sent to. It is no fun unnecessarily repeating testing, because someone was careless.
The following labs have excellent reputations for celiac testing:
Specialty Labs
2211 Michigan Avenue
Santa Monica, CA 90404
310-828-6543 or 800-421-4449
www.specialtylabs.com
Prometheus Labs
5739 Pacific Center Blvd.
San Diego, CA 92121-4203
888-423-5227
www.prometheus-labs.com
The University of Maryland at Baltimore
School of Medicine
Division of Pediatric Gastroenterology and Nutrition
410-706-1997
Dr. Fasano runs this department - very well known for celiac disease
www.celiaccenter.org
University of Iowa Foundation for Celiac Disease Research
University of Iowa Hospitals and Clinics
200 Hawkins Drive
Iowa City, IA 52242
IMMCO Diagnostics, Inc.
Buffalo, NY
716-876-5672 or 800-537-TEST
Email: IMMTEST@aol.com
The Gold Standard for diagnosing celiac disease: Endoscopy/biopsy
Most physicians agree that the most accurate form of diagnosis is a series of intestinal endoscopies to
biopsy the small intestine. The child will be sedated, either with "conscious sedation" or, more likely
"unconscious sedation" (general anesthesia). While there are some risks inherent in anesthesia itself,
general anesthesia is a safer way to perform an endoscopy because the child is completely relaxed.
The pediatric gastroenterologist is usually the one to do the actual procedure; an anesthesiologist is
present. A tube (endoscope) is inserted through the mouth and threaded to the small intestine. There,
they clip a part of the mucosal tissue and send it to a lab for biopsy. They are looking at the villi to see
if they have flattened out (mucosal atrophy), or are blunted. The biopsy itself is not painful, because
there are no pain-sensitive nerves inside the small intestines.
Generally, the test is done first while the child is still very sick with symptoms. It is important that the
child is still on a gluten-containing diet at the time of the endoscopy. The expectation at that time is to
see blunted, atrophied villi.
While it is considered the "gold standard" in diagnosing celiac disease, the biopsy does involve risks.
There is a slight chance of internal injury, such as perforation of the bowel or excessive bleeding. Also,
the sample itself is small, and may not be representative of the entire small intestine. Furthermore, it is
difficult to obtain a good sample - some physicians may not be as "good" as others. Interpretation of
the results can be subjective, as well. And finally, a "false negative" result can occur. In other words, a
biopsy that comes back negative for celiac disease does not necessarily mean the patient does not
have celiac disease. It`s important to follow your instinct, and to press further with your doctor when
you feel it is warranted.
Source: Danna Korn, Kids with Celiac Disease: A Family Survival Guide to Raising Happy, Healthy,
Gluten-Free Children, Woodbine House, 2001
Many patients are asymptomatic for years, with the disease becoming active for the first time after
surgery, viral infection, severe emotional stress, or pregnancy and childbirth. CD may appear at any
time in the life of a person with a hereditary pre-disposition. Symptoms of CD are as varied as the
nutritional deficiencies caused by the malabsorption. Infants, toddlers and children may exhibit growth
failure, vomiting, bloated abdomen and behavioral changes. Classic symptoms may include: abdominal
cramping, intestinal gas, distention and bloating chronic diarrhea or constipation (or both) steatorrhea
-- oily stools anemia - unexplained, due to folate, B12, B6, or iron deficiency (or all) weight loss with
large appetite, or weight gain Other symptoms: dental enamel defects osteopenia, osteoporosis bone
or joint pain fatigue, weakness and lack of energy infertility depression Dermatitis Herpetiformis (DH),
is the associated skin condition characterized by blistering, intensely itchy skin. The rash has a
symmetrical distribution and is most frequently found on elbows, knees and buttocks. DH patients can
have gastro-intestinal damage without perceptible symptoms. Many patients are asymptomatic for
years, with the disease becoming active for the first time after surgery, viral infection, severe emotional
stress, or pregnancy and childbirth. CD may appear at any time in the life of a person with a hereditary
pre-disposition. Symptoms of CD are as varied as the nutritional deficiencies caused by the
malabsorption. Infants, toddlers and children may exhibit growth failure, vomiting, bloated abdomen
and behavioral changes. Classic symptoms may include: abdominal cramping, intestinal gas, distention
and bloating chronic diarrhea or constipation (or both) steatorrhea -- oily stools anemia - unexplained,
due to folate, B12, B6, or iron deficiency (or all) weight loss with large appetite, or weight gain Other
symptoms: dental enamel defects osteopenia, osteoporosis bone or joint pain fatigue, weakness and
lack of energy infertility depression Dermatitis Herpetiformis (DH), is the associated skin condition
characterized by blistering, intensely itchy skin. The rash has a symmetrical distribution and is most
frequently found on elbows, knees and buttocks. DH patients can have gastro-intestinal damage
without perceptible symptoms.
How is Celiac treated?
The only treatment for CD/DH is the life-long adherence to gluten-free diet. When gluten is removed
from the diet, the small intestine will start to heal and overall health improved. Medication is normally
not required. Because osteopenic bone disease is common and may be profound in patients with
newly diagnosed Celiac Disease, bone densomitry should be measured in adults at or shortly after
diagnosis. Consult your physician regarding specific nutritional supplementation to correct any
deficiencies. All patients should be monitored by their physician to ensure compliance with, and
response to the gluten-free diet. Dietary compliance decreases the likelihood of osteoporosis,
lymphoma and other associated illnesses. 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. 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.
Potential harmful ingredients include: unidentified starch modified food starch hydrolyzed vegetable
protein-HVP hydrolyzed plant protein-HPP texturized vegetable protein-TVP binders, fillers, excipients,
extenders malt & other natural flavorings Gluten may also be used as a binder in some pharmaceutical
products. Request clarification from food and drug manufacturers when necessary. Alcohol and
vinegar that are properly distilled should not contain any harmful gluten peptides (or prolomines).
Research indicates that the gluten peptide is too large to carry over in the distillation process. This
leaves the resultant liquid gluten-free unless a gluten-containing additive is inserted after the
distillation process. Alcohols and vinegars should be carefully investigated for additives before use.
Malt vinegars are not distilled and therefore are not gluten-free.
What is the role of genetics in Celiac Disease?
Celiac Disease is most commonly found in genetically susceptible Caucasians. Recent studies suggest
that at least 1 in 250 persons in the United States is affected. Many cases go undiagnosed or are
asymptomatic for years. CD occurs in 5 - 15 % of the offspring and siblings of the celiac. In 70% of
identical twin pairs, both twins have the disease. It is suggested that family members be tested.
Labs and Testing: Serological (blood) Testing - Antibodies
Most doctors believe that the specific serologic (blood) tests cannot be used as a positive confirmation
of a diagnosis of celiac disease. However, it most certainly serves as an important screening, and for
many, is proof enough that they should adhere to a gluten-free diet for life.
Sometimes doctors forget to mention this, but it is extremely important that your child be on a
gluten-containing diet for at least three weeks prior to testing. Without gluten in the diet, there will not
be an antibody response and the test will be inconclusive.
It is also important to note that a negative screen does not mean your child isn`t a celiac. Several
factors can affect the results of the screening, and because some of the readings can be subjective,
further testing may be required.
Serological testing is also a good tool after a positive diagnosis of celiac disease. In fact, your child
should be tested annually to make sure his diet is, in fact, 100% gluten-free. Sometimes the blood
screening will reveal elevated antibody levels, and you will discover that something in your child`s diet
that you thought was gluten-free, in fact does contain gluten.
If you want to have a better understanding of the blood tests available for celiac disease, we highly
recommend reading Chapter 22 of Danna Korn`s book, Kids with Celiac Disease.
Have the tests done by a competent lab. The blood can be drawn in the pediatricin`s office, or at a lab
associated with the office. But where the testing is done is extremely important. Make sure the doctor is
directing the lab to send the test to a lab, which has a reputation for conducting a lot of celiac testing.
Also, make sure the lab technician notices the doctor`s directions regarding what lab the blood sample
is to be sent to. It is no fun unnecessarily repeating testing, because someone was careless.
The following labs have excellent reputations for celiac testing:
Specialty Labs
2211 Michigan Avenue
Santa Monica, CA 90404
310-828-6543 or 800-421-4449
www.specialtylabs.com
Prometheus Labs
5739 Pacific Center Blvd.
San Diego, CA 92121-4203
888-423-5227
www.prometheus-labs.com
The University of Maryland at Baltimore
School of Medicine
Division of Pediatric Gastroenterology and Nutrition
410-706-1997
Dr. Fasano runs this department - very well known for celiac disease
www.celiaccenter.org
University of Iowa Foundation for Celiac Disease Research
University of Iowa Hospitals and Clinics
200 Hawkins Drive
Iowa City, IA 52242
IMMCO Diagnostics, Inc.
Buffalo, NY
716-876-5672 or 800-537-TEST
Email: IMMTEST@aol.com
The Gold Standard for diagnosing celiac disease: Endoscopy/biopsy
Most physicians agree that the most accurate form of diagnosis is a series of intestinal endoscopies to
biopsy the small intestine. The child will be sedated, either with "conscious sedation" or, more likely
"unconscious sedation" (general anesthesia). While there are some risks inherent in anesthesia itself,
general anesthesia is a safer way to perform an endoscopy because the child is completely relaxed.
The pediatric gastroenterologist is usually the one to do the actual procedure; an anesthesiologist is
present. A tube (endoscope) is inserted through the mouth and threaded to the small intestine. There,
they clip a part of the mucosal tissue and send it to a lab for biopsy. They are looking at the villi to see
if they have flattened out (mucosal atrophy), or are blunted. The biopsy itself is not painful, because
there are no pain-sensitive nerves inside the small intestines.
Generally, the test is done first while the child is still very sick with symptoms. It is important that the
child is still on a gluten-containing diet at the time of the endoscopy. The expectation at that time is to
see blunted, atrophied villi.
While it is considered the "gold standard" in diagnosing celiac disease, the biopsy does involve risks.
There is a slight chance of internal injury, such as perforation of the bowel or excessive bleeding. Also,
the sample itself is small, and may not be representative of the entire small intestine. Furthermore, it is
difficult to obtain a good sample - some physicians may not be as "good" as others. Interpretation of
the results can be subjective, as well. And finally, a "false negative" result can occur. In other words, a
biopsy that comes back negative for celiac disease does not necessarily mean the patient does not
have celiac disease. It`s important to follow your instinct, and to press further with your doctor when
you feel it is warranted.
Source: Danna Korn, Kids with Celiac Disease: A Family Survival Guide to Raising Happy, Healthy,
Gluten-Free Children, Woodbine House, 2001
Disclaimer: All recommendations, information, dietary suggestions, product news, menus, recipes, and related data contained in this website are
intended for the benefit of Twin Cities R.O.C.K. members. The text in this newsletter has not been submitted for approval to the CSA/USA
medical board. Products mentioned do not constitute endorsement. Food manufacturers’ products are subject to formula change at any time,
changes that may or may not be reflected on labels. Neither Twin Cities R.O.C.K. nor any of its members assume liability for the use of this
information.
Copyright 2005 Twin Cities R.O.C.K. All Rights Reserved.
intended for the benefit of Twin Cities R.O.C.K. members. The text in this newsletter has not been submitted for approval to the CSA/USA
medical board. Products mentioned do not constitute endorsement. Food manufacturers’ products are subject to formula change at any time,
changes that may or may not be reflected on labels. Neither Twin Cities R.O.C.K. nor any of its members assume liability for the use of this
information.
Copyright 2005 Twin Cities R.O.C.K. All Rights Reserved.
| HTML |
| HTML |
| HTML |
| HTML |
| HTML |
| HTML |
| HTML |