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Living With Celiac



What Is Celiac Disease?

Celiac disease was once thought of a disease with only GI symptoms. It is now recognized that the disease is a multi-symptom, multi-system (organ) disease. More often it presents with symptoms that can mimic other problems. Celiac disease is a digestive disease that damages the small intestine and interferes with absorption of nutrients from food. People who have celiac disease cannot tolerate a protein called gluten, which is found in wheat, rye, barley, and possibly oats. When people with celiac disease eat foods containing gluten, their immune system responds by damaging the small intestine. Specifically, tiny fingerlike protrusions, called villi, on the lining of the small intestine are lost. Nutrients from food are absorbed into the bloodstream through these villi. Without villi, a person becomes malnourished regardless of the quantity of food eaten.

Because the body's own immune system causes the damage, celiac disease is considered an autoimmune disorder. However, it is also classified as a disease of malabsorption because nutrients are not absorbed. Celiac disease is also known as celiac sprue, nontropical sprue, and gluten-sensitive enteropathy.

Celiac disease is a genetic disease, meaning that it runs in families. Sometimes the disease is triggered or becomes active for the first time after surgery, pregnancy, childbirth, viral infection, or severe emotional stress. Celiac disease might become apparent in infants when gluten ingestion begins. Symptoms of celiac disease might persist throughout childhood if untreated but usually diminish in adolescence. Symptoms often reappear in early adulthood, between the third and fourth decades of life.

What Are The Symptoms?

Celiac disease affects people differently. Celiac Disease may appear at any time in a person's life. Some people develop symptoms as children, others as adults. The cause of Celiac Disease, also known as celiac sprue, or gluten sensitive enteropathy (GSE), is unknown. Symptoms may or may not occur in the digestive system. For example, one person might have diarrhea and abdominal pain, while another person has irritability or depression.

Classic Symptoms May Include:

Abdominal cramping, intestinal gas, distention and bloating
Chronic diarrhea
Steatorrhea (fatty stools)
Anemia (unexplained)
Weight loss
Delayed growth
Fatigue

Other Symptoms Of Celiac Disease May Include:

Pale, foul-smelling stool
Bone pain
Behavior changes
Muscle cramps
Decreased ability to clot blood
Dehydration
Energy loss
Weakness
Very dry skin
Pain in the joints
Seizures
Tingling numbness in the legs (from nerve damage)
Pale sores inside the mouth (canker sores)
Painful skin rash (dermatitis herpetiformis)
Tooth discoloration or loss of enamel
Depression
Disinterest in normal activities
Irritability
Mood changes
Trouble concentrating

What Are The Complications Of Celiac Disease?

Damage to the small intestine and the resulting problems with nutrient absorption put a person with celiac disease at risk for several diseases and health problems.

Lymphoma and adenocarcinoma are types of cancer that can develop in the intestine.

Osteoporosis is a condition in which the bones become weak, brittle, and prone to breaking. Poor calcium absorption is a contributing factor to osteoporosis.

Easy bruising due to lack of absorption of vitamin K can lead to diminished ability of blood to clot and hence to easy bruising or excessive bleeding.

Miscarriage and congenital malformation of the baby, such as neural tube defects, are risks for untreated pregnant women with celiac disease because of malabsorption of nutrients.

Muscle weakness due to lack of absorption and low levels of potassium and magnesium can lead to severe muscle weakness, muscle cramps, and numbness or tingling sensations in the arms and legs.

Peripheral neuropathy (nerve damage) from vitamin deficiencies of B12 and thiamine may contribute to nerve damage with symptoms of poor balance, muscle weakness, and numbness and tingling in the arms and legs.

Short stature results when childhood celiac disease prevents nutrient absorption during the years when nutrition is critical to a child's normal growth and development. Children who are diagnosed and treated before their growth stops may have a catch-up period.

Seizures, or convulsions, result from inadequate absorption of folic acid.

How Common Is Celiac Disease?

Celiac disease is the most common genetic disease in Europe. In Italy about 1 in 250 people and in Ireland about 1 in 300 people have celiac disease. It is rarely diagnosed in African, Chinese, and Japanese people.

An estimated 1 in 4,700 Americans have been diagnosed with celiac disease. Some researchers question how celiac disease could be so uncommon in the United States since it is hereditary and many Americans descend from European ethnic groups in whom the disease is common. A recent study in which random blood samples from the Red Cross were tested for celiac disease suggests that as many as 1 in every 250 Americans may have it. Celiac disease could be underdiagnosed in the United States for a number of reasons:

Celiac symptoms can be attributed to other problems.

Many doctors are not knowledgeable about the disease.

More research is needed to find out the true prevalence of celiac disease among Americans.

How Is Celiac Disease Diagnosed?

Diagnosing celiac disease can be difficult because some of its symptoms are similar to those of other diseases, including irritable bowel syndrome, Crohn's disease, ulcerative colitis, diverticulosis, intestinal infections, chronic fatigue syndrome, and depression. If a person responds to the gluten-free diet, the physician will know for certain that the diagnosis of celiac disease is correct.

Recently, researchers discovered that people with celiac disease have higher than normal levels of certain antibodies in their blood. Antibodies are produced by the immune system in response to substances that the body perceives to be threatening. To diagnose celiac disease, physicians test blood to measure levels of antibodies to gluten. These antibodies are antigliadin, anti-endomysium, and antireticulin.

If the tests and symptoms suggest celiac disease, the physician may remove a tiny piece of tissue from the small intestine to check for damage to the villi. This is done in a procedure called a biopsy: the physician eases a long, thin tube called an endoscope through the mouth and stomach into the small intestine, and then takes a sample of tissue using instruments passed through the endoscope. Biopsy of the small intestine is the best way to diagnose celiac disease.

What Is The Treatment?

Strict adherence to a gluten-free diet for life is the only treatment currently available. When gluten is removed from the diet, the small intestine will start to heal and overall health improves. Improvements begin within days of starting the diet, and the small intestine is usually completely healed (meaning the villi are intact and working ) in 3 to 6 months. (It may take up to 2 years for older adults.)

The gluten-free diet is a lifetime requirement. Eating any gluten, no matter how small an amount, can damage the intestine. This is true for anyone with the disease, including people who do not have noticeable symptoms. Depending on a person's age at diagnosis, some problems, such as delayed growth and tooth discoloration, may not improve.

A small percentage of people with celiac disease do not improve on the gluten-free diet. These people often have severely damaged intestines that cannot heal even after they eliminate gluten from their diets. Because their intestines are not absorbing enough nutrients, they may need to receive intravenous nutrition supplements. Drug treatments are being evaluated for unresponsive celiac disease. These patients may need to be evaluated for complications of the disease.

The Gluten-Free Diet

A gluten-free diet means avoiding all foods that contain wheat (including spelt, triticale, and kamut), rye, barley, and possibly oats. This includes most breads, pasta, cereal, and many processed foods. Despite these restrictions, people with celiac disease can eat a well-balanced diet with a variety of foods, including bread and pasta made from potato, rice, soy, or bean flours. Plain meat, fish, rice, fruits, and vegetables do not contain gluten, so people with celiac disease can eat as much of these foods as they like.

Whether people with celiac disease should avoid oats is controversial because some people have been able to eat oats without having a reaction. Scientists are doing studies to find out whether people with celiac disease can tolerate oats. Until the studies are complete, people with celiac disease should follow their physician or dietitian's advice about eating oats. Oats are often cross contaminated either while growing in the fields or in the processing plants.

The gluten-free diet is complicated. Adapting to the gluten-free diet requires some lifestyle changes. It is essential to read labels which are often imprecise, and to learn how to identify ingredients that may contain hidden gluten.

Potentially Harmful Ingredients

Malt
Unidentified starch
Modified food starch
Hydrolyzed vegetable protein (HVP)
Hydrolyzed plant protein (HPP)
Texturized vegetable protein (TVP)
Unidentified vinegars
Binders
Fillers
Flavors

Celiac Disease At A Glance

Celiac disease is a chronic digestive disorder in which damage to the lining of the small intestine leads to the malabsorption of minerals and nutrients.

The destruction of the inner lining of the small intestine in celiac disease is caused by an immunological (allergic) reaction to gluten.

Gluten is a family of proteins present in wheat, barley, rye, and sometimes oats.

Patients with celiac disease may develop diarrhea, steatorrhea, weight loss, flatulence, iron deficiency anemia, abnormal bleeding, or weakened bones. However, many adults with celiac disease may have either no symptoms or only vague abdominal discomfort such as bloating, abdominal distension and excess gas.

Children with celiac disease may also have stunted growth, and if untreated, childhood celiac disease can result in short stature as an adult.

Blood tests can be performed to diagnose celiac disease; they include endomysial antibodies, anti-tissue transglutaminase antibodies, and anti-gliadin antibodies.

There is no cure for celiac disease. The treatment of celiac disease is a gluten free diet.

In most patients, a gluten free diet will result in improvements in symptoms within weeks.

In children with celiac disease, successful treatment with gluten free diet can also lead to resumption of growth (with rapid catch up in height).

Failure to respond to gluten free diet can be due to several reasons: the most common reason is failure to adhere to a strict gluten free diet.

Refractory celiac disease is a rare condition in which the symptoms of celiac disease (and the loss of villi) do not improve despite many months of a strict gluten free diet.

The treatment of refractory celiac disease is first to make sure that all gluten is eliminated from the diet. If there still is no improvement, corticosteroids such as prednisone, and immunosuppressive agents (medications that suppress a person's immune system) such as azathioprine and cyclosporine have been used.

Adults with celiac disease have a several-fold higher than normal risk of developing lymphomas (cancers of the lymph glands) in the small intestine and elsewhere. They also have a high risk of small intestinal and, to a lesser degree, of esophageal carcinomas (cancers of the inner lining of the intestine and esophagus).

Celiac Support Links

Celiac Society
National Foundation for Celiac Awareness
Celiac Disease and Gluten-free Diet Support Center
Celiac Sprue Association
Gluten Intolerance Group


Medical Information For Celiacs

Celiac Disease from Medicine Net
Celiac Disease Center
National Digestive Diseases Information Clearinghouse
eMedicine's Celiac Sprue
eMedicine's Sprue
eMedicine's Patient Education articles


Gluten Free Living

Kraft Foods
Gluten-Free Restaurants
Outback Steakhouse
Quick Start Diet Guide

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The information contained in this Web site should not be used as a substitute for the medical care and advice of your doctor. There may be variations in treatment that your doctor may recommend based on individual facts and circumstances. We at CYNLYN.COM are not trained medical professionals, so any advice offered by us is not intended to take the place of that offered by trained medical professionals. The goal of our site and our responses to your questions is to provide accurate information about the disease to both diagnosed and undiagnosed individuals, and to facilitate the diagnosis of the latter by trained medical professionals. We advise that you consult with your doctor if you are experiencing ANY symptoms of unknown origin. This information is provided "as is" without warranty of any kind, either expressed or implied.

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