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Celiac Disease

Celiac Disease is one of the most common and most underdiagnosed auto-immune conditions in this country today.

It is not necessarily a diarrheal illness, but a multisystem disease with the bowel as the target of injury.

Current treatment consists of a gluten free diet. Because gluten is often a hidden ingredient in processed foods, the guidance of a trained nutritionist is important.

 

What is Celiac Disease?

Celiac disease is a an autoimmune disorder that causes damage to the small intestine, which can lead to malabsorption of nutrients. A genetic intolerance to gluten, a protein found in wheat, rye and barley, triggers this destructive reaction of the immune system. Common resulting complications of celiac disease in adults include reduced bone density (osteopenia and osteoporosis), anemia, increased risk of other autoimmune disorders and malignancies, infertility and neurological problems.

Celiac disease is very common, one of the most common inherited diseases that physicians can encounter. Originally considered to be a rare disease of childhood, it is now recognized predominantly as a disease of adults.

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.

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 it runs in families. Sometimes, the disease is triggered or becomes active for the first time - after surgery, pregnancy, childbirth, viral infection or sever emotional stress.  Left untreated, celiac disease can be fatal.

Symptoms of Celiac Disease 

(for specific articles on the following diseases and condtitions, click on each symptom)

There are numerous diseases and conditions associated with celiac disease. Some of these include Anemia, Cancer, Crohn's Disease, Diabetes (Type 1), Down Syndrome, Fertility Problems - unexplained infertility, miscarriage, etc., Gastric Ulcers, Lactose Intolerance, Neuropathy - Peripheral, Neurological Conditions (Autism, ADD, ADHD, Epilepsy), Osteoporosis/Osteopenia, Skin Disorders (including dermatitis herpetiformis - a burning, itching, blistering rash), Thyroid Disease and other disorders such as Rheumatoid Arthritis and Systemic Lupus Erythematosus.

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.

Symptoms of celiac disease may include one or more of the following:

  • gas
  • recurring abdominal bloating and pain
  • chronic diarrhea
  • pale, foul-smelling or fatty stool
  • weight loss / weight gain
  • fatigue
  • unexplained anemia (low count of red blood cells causing fatigue)
  • bone or joint pain
  • osteoporosis, osteopenia
  • behavioural changes
  • tingling 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 mouth, called aphthous ulcers
  • tooth discolouration or loss of enamel
  • itchy skin rash called dermatitis herpetiformis

A partial listing of gastrointestinal symptoms:

A partial listing of non-intestinal symptoms:

  • Anemia (low blood count)
  • Bone and joint pain
  • Bone disease (osteoporosis, kyphoscholiosis, fracture)
  • Breathlessness (due to anemia)
  • Bruising easily
  • Dental enamel defects and discoloration
  • Depression
  • Fatigue
  • Growth delay in children
  • Hair loss
  • Hypoglycemia (low blood sugar)
  • Irritability and behavioural changes
  • Malnutrition
  • Mouth ulcers
  • Muscle cramps
  • Nosebleed
  • Seizures
  • Short stature, unexplained
  • Skin disorders (dermatitis herpetiformis)
  • Swelling, general or abdominal
  • Vitamin or mineral deficiency, single or multiple nutrient (for example, iron, folate, vitamin K)

A person with celiac disease many have no symptoms. People without symptoms are still at risk for the complications of celiac disease, including malnutrition. The longer a person goes undiagnosed and untreated, the greater the chance of developing malnutrition and other complications.

Anemia, delayed growth and weight loss are signs of malnutrition: The body is just not getting enough nutrients. Malnutrition is a serious problem for children because they need adequate nutrition to develop properly.

Why are Celiac Symptoms so varied?

Researchers are studying the reasons celiac disease affects people differently. Some people develop symptoms as children, others as adults. Some people with celiac disease may not have symptoms, while others may not know their symptoms are from celiac disease. The undamaged part of their small intestine may not be able to absorb enough nutrients to prevent symptoms.

The length of time a person is breastfed, the age a person started eating gluten-containing foods, and the amount of gluten-containing foods one eats are three factors thought to play a role in when and how celiac appears. Some studies have shown, for example, that the longer a person was breastfed, the later the symptoms of celiac disease appear and the more uncommon the symptoms.

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, sometimes celiac disease is 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 under-diagnosed or misdiagnosed.

Recently, researchers discovered that people with celiac disease have higher than normal levels of certain auto-antibodies in their blood. Antibodies are protective proteins produced by the immune system in response to substances that the body perceives to be threatening. Auto-antibodies are proteins that react against the body's own molecules or tissues. To diagnose celiac disease, physicians will usually test blood to measure levels of

  • Immunoglobulin A (IgA0
  • Anti-Tissue Transglutaminase (tTGA)
  • IgA Anti-Endomysium Antibodies (AEA)

Before being tested, one should continue to eat a regular diet that includes foods with gluten, such as breads and pastas. 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.

If the tests and symptoms suggest celiac disease, the doctor will perform a small bowel biopsy. During the biopsy, the doctor removes a tiny piece of tissue from the small intestine to check for damage to the villi. To obtain the tissue sample, the doctor eases a long, thin tube called an endoscope through the mouth and stomach into the small intestine. Using instruments passed through the  endoscope, the doctor then takes the sample.

Screening

Screening for celiac disease involves testing for the presence of antibodies in the blood in people without symptoms. There is no routine screening for celiac disease. Testing for celiac-related antibodies in children less than 5 years old may not be reliable. However, since celiac disease is hereditary, family members, particularly first-degree relatives (parents, siblings or children of people who have been diagnosed) may wish to be tested for the disease. About 5-15% of an effected person's first-degree relatives will also have the disease. About 3-8% of people with type 1 diabetes will have biopsy-confirmed celiac disease, and 5-10% of people with Down syndrome will be diagnosed with celiac disease.

The Web contains information about celiac disease, some of which is not accurate. The source for information is National Digestive Diseases Information Clearinghouse (NDDIC) at http://digestive.niddk.nih.gov/ddiseases/pubs/celiac.  For the best advice on diagnosis and treatment of celiac disease, or other disorder, consult your doctor and dietician.

Treatment for Celiac Disease

The only treatment for celiac disease is to follow a gluten-free diet. When a person is first diagnosed with celiac disease, the doctor usually will ask the person to work with a dietician on a gluten-free diet plan. A dietician is a health care professional who specializes in food and nutrition. Someone with celiac disease can learn from a dietician how to read ingredient lists and identify foods that contain gluten in order to make informed decisions at the grocery store and when eating out.

For most people, following this diet will stop symptoms, heal existing intestinal damage, and prevent further damage. Improvements begin within days of starting the diet. The small intestine is usually completely 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.

In order to stay well, people with celiac disease must avoid gluten for the rest of their lives. Eating any gluten, no matter how small an amount, can damage the small intestine. The damage will occur in anyone with the disease, including people without noticeable symptoms. Depending on a person's age at diagnosis, some problems will not improve, such as delayed growth and tooth discolouration.

Some people with celiac disease show no improvement on the gluten-free diet. The condition is called unresponsive celiac disease. The most common reason for poor response is that small amounts of gluten are still present in the diet. Advice from a dietician who is skilled in educating patients about the gluten-free diet is essential to achieve best results.

Rarely, the intestinal injury will continue despite a strictly gluten-free diet. People in this situation have severely damaged intestines that cannot heal. Because their intestines are not absorbing enough nutrients, they may need to directly receive nutrients into their bloodstream through a vein (intravenously). People with this condition may need to be evaluated for complications of the disease. Researchers are now evaluating drug treatments for unresponsive celiac disease.

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 and anemia as well as several diseases and health problems.

  • Lymphoma and adenocarcinmoa are cancers that can develop in the intestine
  • Osteoporosis is a condition in which the bones become weak, brittle, and prone to breaking. Poor calcium absorption contributes to osteoporosis.
  • Miscarriage and congenital malformation of the baby, such as neural tube defects, are risks for pregnant women with untreated celiac disease because of nutrient absorption problems.
  • Short Stature refers to being significantly under-the-average height. 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.

How Common is Celiac Disease

Data on the prevalence of celiac disease is spotty. It is estimated that, in Canada, 1 in 250 people have celiac disease.  In Italy, about 1 in 184 people; in Holland, 1 in 131; in Ireland, about 1 in 122; and in Denmark, 1 in 200 people have celiac disease. Recent studies have shown that it may be more common in Africa, South America and Asia, than previously believed. 

Until recently, celiac disease was thought to be uncommon in United States. However, studies have shown that celiac disease is very common. Recent findings estimate about 2 million people in the United States have celiac disease, or about 1 in 133 people. Among people who have a first-degree relative diagnosed with celiac disease, as many as 1 in 22 people many have the disease.

Celiac disease could be under-diagnosed for a number of reasons:

  •  celiac symptoms can be attributed to other problems
  •  many doctors are not knowledgeable about celiac disease
  •  only a small number of laboratories are experienced  and skilled in testing for celiac disease

More research is needed to learn the true prevalence of celiac disease.

Prognosis (Expectations)

Removing all damaging grains ("triggers" to the immune system) from the diet is the most important measure one can take to become healthy. One who follows the diet strictly can expect to lead a long, healthy life (providing permanent damage did not occur before diagnosis).

Complications

Depending on the degree of intestinal damage prior to diagnosis, the improvement in symptoms may vary in duration once treatment begins. The gluten-free diet must be carefully and continuously followed.

When untreated, the disease can cause life-threatening complications. A delayed diagnosis or non-compliance with the diet places one at risk for developing associated conditions such as infertility, miscarriage, osteoporosis, fractures, certain types of intestinal cancer, or other autoimmune disorders.

Support Groups

www.celiac.ca

www.diabetes.ca

www.torontoceliac.org

www.autismsocietycanada.ca

Calling Your Health Care Provider

Call your health care provider if symptoms develop that are suggestive of celiac disease.

Disclaimer:
The content on this website is not to be taken as medical advice. Consult  with your medical practitioner for all medical advice.


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Last modified: 12/07/11