Step 1:  So you think you have Celiac Disease?

Celiac Disease is an autoimmune genetic condition in which gluten (a protein in wheat, rye and barley) causes damage to the villi in the small intestine. This leads to a variety of symptoms and also the inability of the intestine to absorb nutrients from the diet. The symptoms of cleiac disease can occur at any age once gluten is present in the diet. The type and severity of symptoms vary greatly from person to person. Children may present with short stature, delayed puberty or dental enamel defects. Adults may present  with anemia due to iron and or folate deficiency. In many cases, celiac disease is silent and is discovered only by blood screening.

If you are suffering from one or more of the following symptoms then you may have celiac disease:
  • Abdominal distension
  • Abdominal pain, bloating/cramping/gas
  • Anemia - iron, folate, vitamin B12 deficiency
  • Anorexia
  • Bone/joint pain
  • Chronic diarrhea
  • Constipation
  • Delayed puberty in children
  • Delayed growth/short stature in children
  • Depression
  • Dermatitis herpetiformis (DH)
  • Elevated transaminases (liver enzymes)
  • Easy bruising
  • Extreme weakness and fatigue
  • Indigestion and nausea
  • Infertility (in both men and women)
  • Failure to thrive in children
  • Lactose intolerance
  • Irritabilty
  • Menstral irregularities
  • Migraine
  • Muscle wasting
  • Peripheral neuropathy, ataxia epilepsy
  • Recurrent oral canker sores
  • Recurrent miscarriages
  • Swelling of hands and feet
  • Vomiting
  • Weight loss
There are also several other conditions associated with celiac disease. Having any auto-immune disorder increases the likelihood of developing celiac disease. If a person has a family history of celiac disease or has symptoms of any of the following diseases, screening for celiac disease should be considered:

Associated Conditions (% affected):
  • Relative or individual with celiac disease (8-15%)
  • Type 1 Diabetes (5-8%)
  • Autoimmune thyroiditis (2-5%)
  • Down Syndrome (2-5%)
  • Turner Syndrome (2-5%)
  • IgA deficiency (1-4%)

Step 2:  Talk to your family doctor and get tested


If you suspect that you have celiac disease, you should ask your family doctor about getting the blood tests done to screen for celiac disease.

 

Which tests are used for the screening for celiac disease in Canada?

 

Excellent blood tests to detect endomysial (EMA) and tissue transglutaminase (TTG) antibodies are now available to screen for celiac disease in people with mild or atypical symptoms and those in high risk groups. An additional test is required to measure the serum IgA concentration. Such tests may suggest that a person has celiac disease, but they do not replace the need for an intestinal biopsy.

 

Is one test better than the other?

 

Both tests are equally accurate as screens for celiac disease in individuals who regularly eat foods that contain gluten.

 

Should I begin a gluten-free diet before taking the blood screening test?

 

No; a gluten-free diet should not be started before taking the blood screening test.  For the TTG and EMA blood tests to work properly, one must be eating gluten daily.

 

My doctor ordered another test. Why?

 

In addition to the above tests, the serum IgA test is used to evaluate IgA deficiency. If your body does not make serum IgA, the TTG and EMA results are usually falsely negative. IgA deficiency occurs in 3 – 5% of individuals with celiac disease. IgA deficiency alone may cause intestinal symptoms and you should discuss with your doctor the need for upper endoscopy and intestinal biopsy.

Step 3: Putting it all together, understanding the blood test results


How to interpret the results of the blood screening tests:

 

If the results of your TTG and EMA tests come back positive then there is 90% chance that you do have celiac disease.

 

If the results of your TTG and EMA test come back negative then there is a 90% chance that you do not have celiac disease

 

Occasionally the TTG and EMA test results can come back as a false negative, usually this happens in people with IGA deficiency.  If your blood test comes back negative and you continue to have symptoms for celiac disease, then an intestinal biopsy will be necessary in order to diagnose the disease.

 

 

Do these tests work all the time?

 

The TTG and EMA tests are about 90% accurate for individuals who make serum IgA. They are not as accurate in children under three years of age. Because the tests are not 100% accurate, anyone with a negative test result and symptoms suggestive of celiac disease should talk to a doctor about an upper endoscopy and intestinal biopsy.

 

STEP 4: My blood screening test came back positive, what do I do now?

 

If your blood screening test is positive then you should ask your family doctor to schedule you for a biopsy with a gastroenterologist.  The biopsy is needed to find out if you have celiac disease because of the 10% possibility of a falsely positive blood test. A gluten-free diet should not be started before a biopsy has been completed, since it can interfere with making an accurate diagnosis. You should continue to consume at least the equivalent of one to four slices of bread containing gluten every day until the date of your biopsy in order for it to be accurate. If you have significant symptoms, inform your physician right away so that the biopsy can be scheduled as early as possible.

 

If your blood screening test is positive then it is important that your family also be screened for celiac disease. First-degree relatives (parents, siblings, children) of people with celiac disease have a 10-15% risk of developing celiac disease at any age. Recommendations suggest screening should be carried out in relatives of individuals with celiac disease, especially if they have symptoms.

 

STEP 5: My biopsy shows that I have celiac disease

 

The only treatment for celiac disease, including those patients with dermatitis herpetiformis (DH) is a strict gluten-free diet for life. A gluten-free diet enables the gut to recover and reduce the risk of developing many of the complications of untreated celiac disease.      

 

Research has demonstrated that the risk of complications of celiac disease including osteoporosis, anemia, infertility, poor growth, and certain cancers is reduced by a gluten-free diet in individuals with celiac disease.

 

Because of the complexity of the gluten-free diet, patients should be referred to a registered dietitian with expertise in celiac disease for nutrition assessment, education and follow-up. Regular follow-up with your physician is also recommended.

 

There are many great resources available for people with celiac disease.  Please check the resources tab for a list of reliable resources.

For further information visit the Canadian Celiac Association:
www.celiacguide.ca
www.celiacguide.org