Celiac disease

What is celiac disease?

In people with celiac disease, any contact with gluten (a family of food proteins) triggers a reaction from the body’s defense (immune) system. This immune response to gluten—no matter where in the body the contact happened—mainly results in damage to the gut (small intestine) lining. This is why celiac disease is called an autoimmune disease.

A healthy small intestine is lined with tiny finger-like projections (called villi) that stick up from the surface. Villi increase the area available to absorb nutrients from food. When children with celiac disease are exposed to gluten, the resulting immune reaction damages villi, which become flat. As a result:

  • It becomes difficult to absorb nutrients. This is called malabsorption.
  • Lack of nutrients due to malabsorption may affect growth and development.
  • It also may cause digestive system (gastrointestinal) symptoms, such as diarrhea and stomach pain.
Celiac disease: Villi damage
 
With celiac disease the finger-like projections (villi) found in the small intestine become damaged and flattened. This makes absorbing nutrients difficult.

What is gluten?

Gluten is the name of a family of proteins found in grains. Gliadin and glutenin are the two main gluten proteins.

Gluten is found in:

  • all forms of wheat (including durum, semolina, spelt, kamut, einkorn and farro)
  • rye
  • barley
  • triticale (rye and barley mix).

Causes of celiac disease

Celiac disease affects about 350,000 Canadians (roughly 1 in 100). It occurs in people all over the world and at any age. People develop celiac disease because of a combination of a genetic susceptibility and environmental factors. If the two conditions are met, some people will develop the condition.

People with a relative with celiac disease or who have certain genetic conditions (such as Down syndrome or Turner syndrome) are at higher risk of developing celiac disease.

People who already have one autoimmune condition, such as type 1 diabetes, are at higher risk for developing other autoimmune conditions, such as celiac disease.

Signs and symptoms of celiac disease

Some people with celiac disease may have no symptoms at all.

However, many people with celiac disease experience some symptoms. When a person with celiac disease is exposed to gluten, they may have trouble with their digestive system, malabsorption-related issues and other symptoms. Below are some common symptoms of celiac disease. Some people may only have one of these symptoms, while others may experience multiple symptoms.

Download celiac symptoms poster PDF.  

Digestive system symptoms

When a person with celiac disease is exposed to gluten, they may experience one or more of the following digestive system symptoms:

Malabsorption-related symptoms

They may also experience one or more symptoms that are not related to the digestive system but are due to nutrient malabsorption. These may include:

  • anemia (low blood haemoglobin from iron malabsorption)
  • fatigue
  • poor growth (being shorter than expected)
  • weight loss or poor weight gain
  • delayed puberty
  • vitamin or mineral deficiencies (e.g. calcium, B12, vitamins A, D, E and K).

Brain

A person with celiac disease may experience one or more symptoms affecting their mental health including:

Skin

People with celiac disease may also experience skin conditions including:

  • skin rash (dermatitis herpetiformis)
  • brittle nails.

Mouth

Symptoms of celiac disease that affect the mouth include:

  • mouth sores
  • tooth enamel defects

Reproductive

Both males and females with celiac disease may experience issues related to reproduction including:

  • infertility (difficulty conceiving children, in both men and women)
  • miscarriage
  • menstrual irregularities.

Body

Other celiac disease symptoms that could affect parts of the body include:

  • osteopenia (mild) or osteoporosis (more serious bone density problem)
  • joint pain
  • fatigue
  • liver and biliary tract disorders.

How celiac disease is diagnosed

Blood tests

Doctors can order blood tests to screen for celiac disease. These blood tests look for immune proteins (called auto-antibodies) that the body has made in response to gluten in people with celiac disease.

The possible blood tests include:

  • Anti-tissue transglutaminase (TTG) antibodies
  • Anti-deamidated gliaden peptide (DGP) antibodies
  • Anti-endomysial antibodies (EMA)

Your doctor does not need to order all of these blood tests to screen for celiac disease.

Depending on the results, your doctor or health-care provider will talk to you about further testing to confirm celiac disease.

Upper endoscopy

An upper endoscopy may help confirm the diagnosis. An upper endoscopy is a procedure that allows doctors to see the upper part of your child’s digestive system (from the mouth to the top part of the small intestine). Never start your child on a gluten-free diet before you know for sure whether an upper endoscopy is needed to confirm the diagnosis of celiac disease.

Upper endoscopy
Download celiac symptoms poster PDF.  
During an upper endoscopy, a thin flexible tube with a camera on the end is inserted into the mouth and down the esophagus to look at the esophagus, stomach, and duodenum (top part of the small intestine).

Biopsy of the small intestine

During an upper endoscopy, small pieces of tissue (biopsies) of the small intestine are taken; they will be examined under a microscope. If your child has celiac disease, the biopsy will show changes to villi in the sample from the small intestine.

Never start your child on a gluten-free diet without first getting a confirmed diagnosis of celiac disease. If a biopsy is done after your child starts a gluten-free diet, your child’s villi may look normal because they will have had a chance to heal since the immune response will have stopped. The biopsy may give a false negative result, which means that the result is negative even though your child has celiac disease.

Talk to your child’s doctor for more information about screening for celiac disease.

Treatment of celiac disease

Celiac disease is a life-long condition. There is no cure or medication for celiac disease. The only treatment is a strict gluten-free diet for life. The diet will help with the symptoms and will keep your child healthy.

Even if your child has no symptoms, once diagnosed your child must follow a strict gluten-free diet for life for treatment of the disease.

Your child must also limit skin contact with gluten-containing products. Gluten-containing products can include food or non-food items (for example, hand cream). Contact with gluten can trigger skin reactions in some people with celiac disease. It is also possible for people with celiac disease to transfer gluten from their skin to their mouth and gut when they are in contact with gluten, which is not safe.

Starting treatment: The gluten-free diet

Once gluten is removed from your child’s diet, the small intestine will start to heal. Your child should start to feel better and symptoms should improve after about six months of being strictly gluten-free.

Maintaining treatment: Sticking to a gluten-free diet

Do not stop the gluten-free diet if your child’s symptoms improve. Your child is feeling better because the gluten-free diet is working. If you stop the gluten-free diet, the symptoms are going to come back and the villi will flatten. Even if your child has no symptoms, stopping the gluten-free diet will damage the villi and any previous symptom is going to return.

If your child’s symptoms of celiac disease do not improve after six months, contact your doctor.

These tips and resources can help you and your child stick to a strict gluten-free diet.

What happens without a gluten-free diet?

Gluten is toxic to people with celiac disease because it triggers an immune reaction even if your child shows no symptoms.

If your child continues to be exposed to gluten, celiac disease may lead to future health problems including:

  • low bone density (osteopenia or osteoporosis)
  • some small bowel cancers
  • other autoimmune diseases (for example thyroid problems)
  • vitamin and mineral deficiencies because of malabsorption
  • premature delivery if pregnant.

If your child follows a strict gluten-free diet, their chances of getting these conditions become the same as the general healthy population.

Monitoring your child’s symptoms

After the diagnosis, no other upper endoscopy is usually needed. Your child will have more blood tests that check anti-TTG antibody levels. As your child continues a strict gluten-free diet, their antibody levels should lower. High antibody levels tell the doctor that your child was probably exposed to gluten.

Your child’s doctor will also make sure that your child is growing well. If your child had symptoms at the time of diagnosis, they should improve while on a strict gluten-free diet.

When to see a doctor

See your child’s doctor if:

  • your child’s symptoms remain after more than six months of following a strict gluten-free diet
  • your child’s symptoms worsen.

Your child’s doctor may refer you to a dietitian. A dietitian can give you more advice about celiac disease, how to plan a gluten-free diet, and how to get a balance of nutrients while following a gluten-free diet.

Key points

  • Celiac disease is an autoimmune condition in which any contact with gluten (a family of food proteins) triggers a reaction from the body’s defense (immune) system.
  • Gluten is found in rye, barley, triticale and all forms of wheat.
  • In celiac disease, the lining of the small intestine is damaged by the immune system reaction. This means that it will be harder for your child’s body to get nutrients from foods.
  • Common symptoms of celiac disease include diarrhea, constipation, tiredness, headaches and poor growth. Some people experience no symptoms at all.
  • The only treatment for celiac disease is following a strict gluten-free diet for life. Never get your child to start a gluten-free diet before your doctor confirms the diagnosis.
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Peggy Marcon, MD, FRCPC

Inez Martincevic, MSc, RD

Catharine Walsh, MD, MEd, PhD, FAAP, FRCPC

2/6/2017
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