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About Celiac
What is Celiac
Disease?
There are many questions that arise when you are first diagnosed with Celiac Disease, the first of which is typically, "what is Celiac?"
Celiac Disease, also known as non-tropical Sprue and gluten-sensitive enteropathy can be diagnosed at any age. The disease is an autoimmune condition that is triggered by the ingestion of a protein known as gluten.
When a person with Celiac Disease consumes wheat products which contain gluten, an immune reaction occurs in the small intestine. The immune reaction causes damage to the surface of the small intestine. The first part of the small intestine to sustain damage is the villi, the primary component in nutrient absorption. When the villi become damaged, the body is unable to absorb nutrients into the bloodstream and the body begins to suffer from malnourishment.
Over time, the decreased absorption of nutrients causes vitamin deficiencies that eventually deprive the brain, peripheral nervous system, bones, liver, and other organs of vital nourishment. If damage to the villi is caused completely by Celiac Disease, once a gluten-free diet is initiated, the villi will be restored to a healthy condition as the stomach renews itself. The amount of time that it takes for the villi to return to a healthy state can vary.
It is not unusual for wheat allergies and Celiac disease to be thought of as one and the same, but they are two distinct health issues and should not be treated as the same. Celiac is not as simple as a histamine reaction to a specific food. Most children will outgrow wheat allergies as they get older, but Celiac Disease is a permanent disease that can only be modified through diet and lifestyle changes that limit symptoms.
Celiac Disease is an autoimmune disease, while people who are allergic to wheat have an IgE-mediated response to wheat protein. When Celiac Disease manifests in the skin, it is called dermatitis herpetiformis. Dermatitis herpetiformis is an extremely itchy rash of small red dots that usually develops into blisters. The rash can occur anywhere on the body, but seems to occur commonly on the fingers, hands, forearms, buttocks and scalp.
How is Celiac Disease Diagnosed?
Several months, or even years can pass before a doctor puts all of a patient’s symptoms together and starts to consider Celiac Disease. Once the doctor does start to consider Celiac Disease, a blood test is typically the first step in the diagnosis process.
The tests, which are sometimes known as the “Celiac Panel,” screen for certain antibodies (proteins) which the body produces to fight bacterial and viral infections and other substances. Sometimes the body produces antibodies to fight against itself, such as when an autoimmune disease is present.
In the case of Celiac Disease, the body produces antibodies against gliadin, and also endomysial and anti-tissue transglutaminase antibodies against the body’s own tissue. A person who has an elevated endomysial and anti-tissue transglutamine antibodies level has a greater than 95% chance of having Celiac Disease.
It’s important that you do not go on a gluten-free diet before being tested for Celiac Disease. Remember, gluten needs to be present in your system in order for the tests to be conclusive.
A more invasive small intestinal biopsy is considered to be the most accurate test for Celiac Disease. A biopsy may be ordered by a doctor, depending on the blood test results. The biopsy is taken by performing an upper endoscopy (EGD). During an EGD, the doctor inserts a long, flexible viewing tube through the mouth and into the duodenum. A smaller biopsy instrument is then inserted into the tube to get samples of the intestinal lining. The samples are then examined by a pathologist, who studies the villi for damage, and looks for other signs of Celiac Disease. Not everyone needs to be screened for Celiac Disease. Those who should consider receiving screening are ones who experience specific Celiac Disease symptoms.
Celiac Disease Symptoms
Symptoms of Celiac can vary greatly from one person to another. Some patients develop symptoms early in life, while others feel healthy far into adulthood. Some patients have mostly physical symptoms such as digestive issues. Other people, especially children, show symptoms such as emotional distress and irritability. Children who have a healthy diet, but fail to physically thrive may be malnourished as a result of Celiac Disease. It is important to note that not all people with Celiac will have all of the symptoms. Celiac symptoms may include:
· Gas
· Recurring abdominal bloating and pain
· Chronic diarrhea
· Constipation
· Pale, foul-smelling or fatty stool
· Weight loss/weight gain
· Fatigue
· Stomach pain
· Unexplained anemia (low count of red blood cells, causing fatigue)
· Bone pain
· Joint pain
· Osteoporosis
· Behavioral changes
· Tingling and numbness in the legs (from nerve damage)
· Muscle cramps
· Seizures
· Missed menstrual periods (often because of excessive weight loss)
· Infertility
· Recurrent miscarriage
· Delayed growth
· Failure to thrive in infants
· Pale sores inside the mouth
· Tooth discoloration or loss of enamel
· Itchy skin rash called dermatitis herpetiformis
Diagnosed, Now What?
Self-Management Steps
Self-management of celiac disease can be broken down into three easy-to-follow steps...
Step One
Step Two
Establish an independent evaluation method for:
Step Three
Maintain and improve self-management through:
Self-Management with a Support System
No self-management system is complete without the addition of a support system. When battling any kind of illness or disease a support system can be the difference between succeeding and flailing. No two people will need or desire the exact same type of help or encouragement, but a great place to start building your support system is with your doctor. Find a primary care physician and a dietary specialist with whom you are comfortable. A good indicator of whether you are comfortable with a health care provider is if you are at ease with asking questions and bringing up conversations about celiac disease and the way you are managing it. Remember your responsibility in this supportive relationship is to inform the doctor and dietician of any changes you experience and to be honest with them about your gluten-free diet and overall management of the disease.
Let friends and family know the ways in which they can support you. Most people who love and care about you will want to help, but may feel at a loss for how to help. Provide friends and family with information on celiac disease so they will know what to expect and what they can do to help.
Take advantage of the online support groups, here on Gluten-Free Faces, which have proven to be beneficial for sharing gluten-free recipes, exchanging names of great doctors and medical facilities, talking to someone who understands what you are going through during the down times and offering a general feeling of camaraderie, encouragement, and hopefulness.
There are many questions that arise when you are first diagnosed with Celiac Disease, the first of which is typically, "what is Celiac?"
Celiac Disease, also known as non-tropical Sprue and gluten-sensitive enteropathy can be diagnosed at any age. The disease is an autoimmune condition that is triggered by the ingestion of a protein known as gluten.
When a person with Celiac Disease consumes wheat products which contain gluten, an immune reaction occurs in the small intestine. The immune reaction causes damage to the surface of the small intestine. The first part of the small intestine to sustain damage is the villi, the primary component in nutrient absorption. When the villi become damaged, the body is unable to absorb nutrients into the bloodstream and the body begins to suffer from malnourishment.
Over time, the decreased absorption of nutrients causes vitamin deficiencies that eventually deprive the brain, peripheral nervous system, bones, liver, and other organs of vital nourishment. If damage to the villi is caused completely by Celiac Disease, once a gluten-free diet is initiated, the villi will be restored to a healthy condition as the stomach renews itself. The amount of time that it takes for the villi to return to a healthy state can vary.
It is not unusual for wheat allergies and Celiac disease to be thought of as one and the same, but they are two distinct health issues and should not be treated as the same. Celiac is not as simple as a histamine reaction to a specific food. Most children will outgrow wheat allergies as they get older, but Celiac Disease is a permanent disease that can only be modified through diet and lifestyle changes that limit symptoms.
Celiac Disease is an autoimmune disease, while people who are allergic to wheat have an IgE-mediated response to wheat protein. When Celiac Disease manifests in the skin, it is called dermatitis herpetiformis. Dermatitis herpetiformis is an extremely itchy rash of small red dots that usually develops into blisters. The rash can occur anywhere on the body, but seems to occur commonly on the fingers, hands, forearms, buttocks and scalp.
How is Celiac Disease Diagnosed?
Several months, or even years can pass before a doctor puts all of a patient’s symptoms together and starts to consider Celiac Disease. Once the doctor does start to consider Celiac Disease, a blood test is typically the first step in the diagnosis process.
The tests, which are sometimes known as the “Celiac Panel,” screen for certain antibodies (proteins) which the body produces to fight bacterial and viral infections and other substances. Sometimes the body produces antibodies to fight against itself, such as when an autoimmune disease is present.
In the case of Celiac Disease, the body produces antibodies against gliadin, and also endomysial and anti-tissue transglutaminase antibodies against the body’s own tissue. A person who has an elevated endomysial and anti-tissue transglutamine antibodies level has a greater than 95% chance of having Celiac Disease.
It’s important that you do not go on a gluten-free diet before being tested for Celiac Disease. Remember, gluten needs to be present in your system in order for the tests to be conclusive.
A more invasive small intestinal biopsy is considered to be the most accurate test for Celiac Disease. A biopsy may be ordered by a doctor, depending on the blood test results. The biopsy is taken by performing an upper endoscopy (EGD). During an EGD, the doctor inserts a long, flexible viewing tube through the mouth and into the duodenum. A smaller biopsy instrument is then inserted into the tube to get samples of the intestinal lining. The samples are then examined by a pathologist, who studies the villi for damage, and looks for other signs of Celiac Disease. Not everyone needs to be screened for Celiac Disease. Those who should consider receiving screening are ones who experience specific Celiac Disease symptoms.
Celiac Disease Symptoms
Symptoms of Celiac can vary greatly from one person to another. Some patients develop symptoms early in life, while others feel healthy far into adulthood. Some patients have mostly physical symptoms such as digestive issues. Other people, especially children, show symptoms such as emotional distress and irritability. Children who have a healthy diet, but fail to physically thrive may be malnourished as a result of Celiac Disease. It is important to note that not all people with Celiac will have all of the symptoms. Celiac symptoms may include:
· Gas
· Recurring abdominal bloating and pain
· Chronic diarrhea
· Constipation
· Pale, foul-smelling or fatty stool
· Weight loss/weight gain
· Fatigue
· Stomach pain
· Unexplained anemia (low count of red blood cells, causing fatigue)
· Bone pain
· Joint pain
· Osteoporosis
· Behavioral changes
· Tingling and numbness in the legs (from nerve damage)
· Muscle cramps
· Seizures
· Missed menstrual periods (often because of excessive weight loss)
· Infertility
· Recurrent miscarriage
· Delayed growth
· Failure to thrive in infants
· Pale sores inside the mouth
· Tooth discoloration or loss of enamel
· Itchy skin rash called dermatitis herpetiformis
Diagnosed, Now What?
You may be relieved to have a
diagnosis of the symptoms that have been troubling you and making
you sick. But, as stated before, there is currently no known cure
for Celiac disease. Therefore, a Celiac diagnosis means a lifetime
of managing the symptoms to avoid suffering and possibly reverse
the damage that has been done. A big part of managing the symptoms
is to create a gluten-free eating plan and stay on it. This means
you must learn to read and understand food labels.
By the time a diagnosis has
been pursued and achieved, most patients are probably aware that
they will suffer if they eat high-gluten foods such as breads,
cakes and cereals. Unfortunately, gluten is found in many other
types of foods besides wheat flour-based baked goods. But did you
know that even toothpaste, shampoo and lotion can contain gluten?
This means reading labels of anything that goes in your mouth or on
your skin, and learning to ask the right questions at restaurants
and other places where food is prepared for you, is an absolute
must in managing celiac symptoms.
Reading
Labels
Since the new food labeling
law, the Food Allergen Labeling and Consumer Protection Act
(FALCPA) took effect in 2006, reading food labels has become much
easier for those who may not happen to know the scientific name for
common ingredients in food that might cause allergic reactions in
people. Now, food labels must clearly state whether the food
contains one of the eight major food allergen such as milk, eggs,
some fish, some nuts, wheat, and soybeans. Any ingredient that
contains protein derived from these foods must also be
listed.
In making food choices, you
will learn to detect language and ingredients that may be
indicative of gluten. For an example, you will learn that when you
see or hear “natural flavoring” you will be almost certain that the
food contains gluten and should be avoided. Other vague ingredients
that you will learn to recognize on foods that probably contain
gluten are modified food starch, vegetable gum and hydrolyzed
vegetable protein.
Self-Management Steps
Self-management of celiac disease can be broken down into three easy-to-follow steps...
Step One
- Eliminate all gluten exposure. Keep your safe list and not-safe list with you at all times and learn where to shop for foods with safe-list ingredients.
- Develop an intake plan. Keep a record of foods and beverages that you can have and where you found them. This includes restaurants where you found good gluten-free menus.
- Keep a journal of how you felt after you ate certain foods.
- Read reputable press releases, journals, articles on celiac disease.
- Identify what vitamin and mineral supplementation you may need
- Identify gluten-free medication sources
- Develop gluten identification skills:
- Label reading—when you read a label and do not recognize a listed ingredient, write that ingredient down and research it.
- Learn ways that cross-contamination can occur and cause you to unknowingly ingest gluten.
- Learn the hidden sources of gluten (soy sauce, BBQ sauce, salad dressings, etc...)
Step Two
Establish an independent evaluation method for:
- New, questionable or controversial celiac disease information
- Unresolved allergy manifestations
- Food industry manufacturing or labeling changes
- Establish an individual treatment plan
- Continue to keep a daily record of all intake, amounts and reactions
Step Three
Maintain and improve self-management through:
- Periodic updates and re-evaluation with medical team
- Continuing to read and research new celiac disease information
- Maintain over all healthy habits such as eating a healthy, gluten-free diet, getting plenty of sleep at night and adequate exercise daily
Self-Management with a Support System
No self-management system is complete without the addition of a support system. When battling any kind of illness or disease a support system can be the difference between succeeding and flailing. No two people will need or desire the exact same type of help or encouragement, but a great place to start building your support system is with your doctor. Find a primary care physician and a dietary specialist with whom you are comfortable. A good indicator of whether you are comfortable with a health care provider is if you are at ease with asking questions and bringing up conversations about celiac disease and the way you are managing it. Remember your responsibility in this supportive relationship is to inform the doctor and dietician of any changes you experience and to be honest with them about your gluten-free diet and overall management of the disease.
Let friends and family know the ways in which they can support you. Most people who love and care about you will want to help, but may feel at a loss for how to help. Provide friends and family with information on celiac disease so they will know what to expect and what they can do to help.
Take advantage of the online support groups, here on Gluten-Free Faces, which have proven to be beneficial for sharing gluten-free recipes, exchanging names of great doctors and medical facilities, talking to someone who understands what you are going through during the down times and offering a general feeling of camaraderie, encouragement, and hopefulness.
© 2012 Created by Chad Hines.
