The Greater New Haven Celiac Group

Frequently Asked Questions

The following is a short lists of the most common questions asked about celiac disease. The top Celiac Disease Centers and related Research Facilities throughout the US offer expanded lists of Q & A forums on their websites. (List of education and research facilities)

What is celiac disease?
How common is celiac disease?
What are the symptoms of celiac disease?
What are the complications of celiac disease?
How is celiac disease diagnosed?
What is the treatment for celiac disease?
What is dematitis herpetiformis (DH)?
What is the treatment for dermatitis herpetiformis?
I have celiac disease. Should my family be tested for celiac disease too?
What is a gluten-free diet?

What is celiac disease?
Celiac disease is not a food allergy or intolerance. Celiac disease (CD) is hereditary, chronic, autoimmune disorder in which the body's response to certain toxic grain proteins (gluten) causes damage to the lining of the small intestine, interfering with proper absorption of food and nutrients. People who have celiac disease cannot tolerate a protein called gluten, found in wheat, barley, rye and possibly oats. Gluten is found mainly in foods but may also be found in products we use every day, such as medication, both OTC and prescription, vitamins, supplements, soy sauce, lipstick, lip balms, sauces, gravies, marinades, imitation seafood, soups, communion wafers, salad dressing, candy, hot dogs and processed meats (check the ingredients or call the manufacturer to ensure GF status). When people with celiac disease eat foods or use products containing gluten, their immune system responds by damaging the small intestine. The tiny, fingerlike protrusions lining the small intestine are damaged or destroyed. Called villi, they normally allow nutrients from food to be absorbed into the bloodstream. Without healthy villi, a person becomes malnourished, regardless of the quantity of food eaten.

How common is celiac disease?
Recent findings estimate about 3 million people in the United States (1% of the population) have celiac disease, or about 1 in 133 people. Yet 97% remain undiagnosed or misdiagnosed with other conditions. Celiac Disease can also occur more frequently in a variety of other disorders. Individuals with any of the following conditions and symptoms should be screened for celiac disease.

Type 1 Diabetes
Osteoporosis
Down Syndrome
Turner Syndrome
William's Syndrome
Other autoimmune disorders: autoimmune thyroid disease, autoimmune liver disease, Sjogren's Syndrome, Addison's Disease, alopecia areata

What are the symptoms of celiac disease?
Celiac disease affects people differently. Symptoms may occur in the digestive system, or in other parts of the body. For example, one person might have diarrhea and abdominal pain, while another person may be irritable or depressed. In fact, irritability is one of the most common symptoms in children. Celiac disease symptoms

What are the complications of celiac disease?
Damage to the small intestine and the resulting nutrient absorption problems put a person with celiac disease at risk for malnutrition, anemia, osteoporosis, miscarriage, lymphoma, short stature and several other diseases and health problems.

How is celiac disease diagnosed?
Recognizing celiac disease can be difficult because some of its symptoms are similar to those of other diseases. In fact, celiac disease is often confused with irritable bowel syndrome, iron-deficiency anemia caused by menstrual blood loss, Crohn’s disease, diverticulitis, intestinal infections, and chronic fatigue syndrome. As a result, celiac disease is commonly underdiagnosed or misdiagnosed.

All tests for celiac disease must be done while the patient is on a normal diet that contains gluten which includes foods such as breads and pasta. If a person stops eating foods with gluten before being tested, the results may be negative for celiac disease even if celiac disease is
actually present.

Recently, researchers discovered that people with celiac disease have higher than normal levels of certain autoantibodies in their blood. Antibodies are protective proteins produced by the immune system in response to substances that the body perceives to be threatening.

Step 1. To obtain a proper diagnosis of celiac disease, a physician will order the following blood tests:

Total IgA
IgA antitissue transglutaminase (tTG)
IgA antiendomysial antibody immunofluorescence (EMA)
If IgA is deficient, IgG tTG test should also be ordered. At the

Step 2. If the blood test results and symptoms indicate celiac disease then the physician will suggest a biopsy of the lining of the small intestine (endoscopy) to confirm the diagnosis. The endoscopy is considered the "gold standard" for diagnosis.

This test is usually performed by a gastroenterologist, a medical doctor specializing in the treatment of digestive diseases. The endoscopy allows the doctor to see the inside lining of your digestive tract and take tissue samples (also called biopsies) for evaluation. Prior to the procedure, the physician will administer a sedative medication which relaxes the patient and causes drowsiness and sleep. In order to enter the small intestine, the doctor puts a long tube into the mouth and down into the stomach. Tissue samples are taken and sent to a lab for processing and evaluation. A tissue biopsy showing damage to the villi of the small intestine will confirm a diagnosis of celiac disease.

What is the treatment?
There is no medication or corrective surgery to make celiac disease disappear. Currently the only treatment for celiac disease is to follow a gluten-free diet for life. For most people, following this diet will stop symptoms, heal existing intestinal damage, and prevent further damage. Improvements can begin within days of starting the diet. The small intestine is usually healed in 3 to 6 months in children and younger adults and within 2 years for older adults. Healed means a person now has villi that can absorb nutrients from food into the bloodstream. Healed does not mean going off the gluten-free diet. Any exposure to gluten will cause damage to the intestines.

What is dermatitis herpetiformis?
Dermatitis herpetiformis (DH) is a severe, itchy, blistering skin manifestation of celiac disease that is genetically determined and is not contagious. The name, dermatitis herpetiformis, is a descriptive name and is not related to either dermatitis or herpes, but is a specific chronic skin condition. The rash may occur in the form of small lumps, like insect bites and in some cases form fluid filled blisters. These small blisters are called vesicles. However the rash may appear hive-like, persisting in one area. DH can flare and subside even without treatment. The rash usually occurs on the elbows, knees, and buttocks. When the rash subsides, which it often does spontaneously, it may leave brown pigmentation or pale areas, where pigmentation is lost.

What is the treatment for dermatitis herpetiformis?
Like celiac disease, dermatitis herpetiformis (DH) is treated with a lifelong gluten-free diet. It may take about six months to achieve moderate improvement in the skin condition and up to two years or more to achieve total control by diet alone, meaning that the skin response is much slower compared to the healing of the intestines with celiac disease. The rash symptoms can be controlled with medications such as dapsone. However, dapsone does not treat the intestinal condition, meaning that an individual with a diagnosis of DH must also maintain a gluten-free diet for life.

I have celiac disease? Should my family members be tested for celiac disease too?
Celiac disease is also a genetic disease, meaning it runs in families. So the answer is yes, they should be tested. When the diagnosis is established in one family member, their first-degree relatives (parents, siblings and children) should have blood tests for celiac disease. This is because at least 10% of family members will have the disease, even if they are asymptomatic. Screening is also recommended for second-degree relatives (grandparents, grandchildren, aunts, uncles and cousins) as they are also at an increased risk for celiac disease. Family members who already have an autoimmune disease are at a greatly increased risk to have celiac disease (25%). (Celiac Disease Center at Columbia University, NY)

What is a gluten-free diet
A gluten-free diet means not eating foods that contain wheat (including spelt, triticale, and kamut), barley, rye and possibly oats. The foods and products made from these grains are also not allowed. In other words, a person with celiac disease should not eat most grain, pasta, cereal, and many processed foods in a typical mainstream diet. Despite these restrictions, people with celiac disease can eat a well-balanced diet with a variety fresh fruits, vegetables, meat, poultry and fish, including many specialty gluten-free products made from safe grains and ingredients. Gluten-free Diet Basics PDF

Frequently Asked Questions The following is a short lists of the most common questions asked about celiac disease. The top Celiac Disease Centers and related Research Facilities throughout the US offer expanded lists of Q & A forums on their websites. (List of education and research facilities) What is celiac disease? How common is celiac disease? What are the symptoms of celiac disease? What are the complications of celiac disease? How is celiac disease diagnosed? What is the treatment for celiac disease? What is dematitis herpetiformis (DH)? What is the treatment for dermatitis herpetiformis? I have celiac disease. Should my family be tested for celiac disease too? What is a gluten-free diet? What is celiac disease? Celiac disease is not a food allergy or intolerance. Celiac disease (CD) is hereditary, chronic, autoimmune disorder in which the body's response to certain toxic grain proteins (gluten) causes damage to the lining of the small intestine, interfering with proper absorption of food and nutrients. People who have celiac disease cannot tolerate a protein called gluten, found in wheat, barley, rye and possibly oats. Gluten is found mainly in foods but may also be found in products we use every day, such as medication, both OTC and prescription, vitamins, supplements, soy sauce, lipstick, lip balms, sauces, gravies, marinades, imitation seafood, soups, communion wafers, salad dressing, candy, hot dogs and processed meats (check the ingredients or call the manufacturer to ensure GF status). When people with celiac disease eat foods or use products containing gluten, their immune system responds by damaging the small intestine. The tiny, fingerlike protrusions lining the small intestine are damaged or destroyed. Called villi, they normally allow nutrients from food to be absorbed into the bloodstream. Without healthy villi, a person becomes malnourished, regardless of the quantity of food eaten. How common is celiac disease? Recent findings estimate about 3 million people in the United States (1% of the population) have celiac disease, or about 1 in 133 people. Yet 97% remain undiagnosed or misdiagnosed with other conditions. Celiac Disease can also occur more frequently in a variety of other disorders. Individuals with any of the following conditions and symptoms should be screened for celiac disease. Type 1 Diabetes Osteoporosis Down Syndrome Turner Syndrome William's Syndrome Other autoimmune disorders: autoimmune thyroid disease, autoimmune liver disease, Sjogren's Syndrome, Addison's Disease, alopecia areata What are the symptoms of celiac disease? Celiac disease affects people differently. Symptoms may occur in the digestive system, or in other parts of the body. For example, one person might have diarrhea and abdominal pain, while another person may be irritable or depressed. In fact, irritability is one of the most common symptoms in children. Celiac disease symptoms What are the complications of celiac disease? Damage to the small intestine and the resulting nutrient absorption problems put a person with celiac disease at risk for malnutrition, anemia, osteoporosis, miscarriage, lymphoma, short stature and several other diseases and health problems. How is celiac disease diagnosed? Recognizing celiac disease can be difficult because some of its symptoms are similar to those of other diseases. In fact, celiac disease is often confused with irritable bowel syndrome, iron-deficiency anemia caused by menstrual blood loss, Crohn’s disease, diverticulitis, intestinal infections, and chronic fatigue syndrome. As a result, celiac disease is commonly underdiagnosed or misdiagnosed. All tests for celiac disease must be done while the patient is on a normal diet that contains gluten which includes foods such as breads and pasta. If a person stops eating foods with gluten before being tested, the results may be negative for celiac disease even if celiac disease is actually present. Recently, researchers discovered that people with celiac disease have higher than normal levels of certain autoantibodies in their blood. Antibodies are protective proteins produced by the immune system in response to substances that the body perceives to be threatening. Step 1. To obtain a proper diagnosis of celiac disease, a physician will order the following blood tests: Total IgA IgA antitissue transglutaminase (tTG) IgA antiendomysial antibody immunofluorescence (EMA) If IgA is deficient, IgG tTG test should also be ordered. At the discretion of the doctor, antigliaden IgG can also be ordered. Step 2. If the blood test results and symptoms indicate celiac disease then the physician will suggest a biopsy of the lining of the small intestine (endoscopy) to confirm the diagnosis. The endoscopy is considered the "gold standard" for diagnosis. This test is usually performed by a gastroenterologist, a medical doctor specializing in the treatment of digestive diseases. The endoscopy allows the doctor to see the inside lining of your digestive tract and take tissue samples (also called biopsies) for evaluation. Prior to the procedure, the physician will administer a sedative medication which relaxes the patient and causes drowsiness and sleep. In order to enter the small intestine, the doctor puts a long tube into the mouth and down into the stomach. Tissue samples are taken and sent to a lab for processing and evaluation. A tissue biopsy showing damage to the villi of the small intestine will confirm a diagnosis of celiac disease. What is the treatment? There is no medication or corrective surgery to make celiac disease disappear. Currently the only treatment for celiac disease is to follow a gluten-free diet for life. For most people, following this diet will stop symptoms, heal existing intestinal damage, and prevent further damage. Improvements can begin within days of starting the diet. The small intestine is usually healed in 3 to 6 months in children and younger adults and within 2 years for older adults. Healed means a person now has villi that can absorb nutrients from food into the bloodstream. Healed does not mean going off the gluten-free diet. Any exposure to gluten will cause damage to the intestines. What is dermatitis herpetiformis? Dermatitis herpetiformis (DH) is a severe, itchy, blistering skin manifestation of celiac disease that is genetically determined and is not contagious. The name, dermatitis herpetiformis, is a descriptive name and is not related to either dermatitis or herpes, but is a specific chronic skin condition. The rash may occur in the form of small lumps, like insect bites and in some cases form fluid filled blisters. These small blisters are called vesicles. However the rash may appear hive-like, persisting in one area. DH can flare and subside even without treatment. The rash usually occurs on the elbows, knees, and buttocks. When the rash subsides, which it often does spontaneously, it may leave brown pigmentation or pale areas, where pigmentation is lost. What is the treatment for dermatitis herpetiformis? Like celiac disease, dermatitis herpetiformis (DH) is treated with a lifelong gluten-free diet. It may take about six months to achieve moderate improvement in the skin condition and up to two years or more to achieve total control by diet alone, meaning that the skin response is much slower compared to the healing of the intestines with celiac disease. The rash symptoms can be controlled with medications such as dapsone. However, dapsone does not treat the intestinal condition, meaning that an individual with a diagnosis of DH must also maintain a gluten-free diet for life. I have celiac disease? Should my family members be tested for celiac disease too? Celiac disease is also a genetic disease, meaning it runs in families. So the answer is yes, they should be tested. When the diagnosis is established in one family member, their first-degree relatives (parents, siblings and children) should have blood tests for celiac disease. This is because at least 10% of family members will have the disease, even if they are asymptomatic. Screening is also recommended for second-degree relatives (grandparents, grandchildren, aunts, uncles and cousins) as they are also at an increased risk for celiac disease. Family members who already have an autoimmune disease are at a greatly increased risk to have celiac disease (25%). (Celiac Disease Center at Columbia University, NY) What is a gluten-free diet A gluten-free diet means not eating foods that contain wheat (including spelt, triticale, and kamut), barley, rye and possibly oats. The foods and products made from these grains are also not allowed. In other words, a person with celiac disease should not eat most grain, pasta, cereal, and many processed foods in a typical mainstream diet. Despite these restrictions, people with celiac disease can eat a well-balanced diet with a variety fresh fruits, vegetables, meat, poultry and fish, including many specialty gluten-free products made from safe grains and ingredients. Gluten-free Diet Basics PDF		What is Celiac Disease? Learn more about celiac disease. Symptoms & Treatment The symptoms of celiac disease vary amongst different people. Professional Help Professionals can answer questions and help make the transition to the gluten-free life easier.
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