Celiac Disease Symptoms, Diagnosis and Treatment

This page gives information on celiac disease symptoms, diagnosis and treatment. Classic celiac disease is seen in toddlers but the disease is also now diagnosed in older children and adults.

This page contains the following information:

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What is Celiac Disease?

Celiac disease is a condition where the lining of the gut is damaged as a result of gluten and the subsequent immune reaction it causes in the body.

Celiac disease occurs in genetically susceptible individuals. It is also known as tropical sprue because of the way the gut looks when biopsied. In the UK and Australasia, celiac disease is spelled coeliac disease.

Some people refer to celiac disease as "gluten allergy" but it is more commonly referred to as "gluten intolerance".

Some people can't eat gluten as it gives them symptoms but these are not caused by an immune reaction so this is not celiac disease and the celiac tests are all negative. This is often referred to as gluten sensitivity - read more.

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What Causes Celiac Disease?

Celiac disease is caused by an intolerance to gluten, which is present in a wide variety of foods. In susceptible individuals, gluten in the food reacts with the body's immune system and that leads to damage of the lining of the gut - called an immune-mediated enteropathy.

The gut is usually lined with finger-like projections called villi. These villi get sloughed off when damaged leaving a flat surface (called villous atrophy). The flattened gut has a much smaller surface area and this, along with the thickening of the lining that occurs, makes it harder for the gut to absorb important nutrients from the diet. This lack of normal absorption of nutrients leads to the celiac disease symptoms.

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What Foods Contain Gluten?

Gluten is found in a variety of foods, especially those that contain flour. So bread, pasta, thickened sauces, many flavorings, and breakfast cereals contain gluten. With better information on food products now, you should see a gluten-free sign on food that does not contain gluten.

Further information can be found in the Useful Resources section - read more

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What are Celiac Disease Symptoms?

Celiac disease in toddlers and older children can have a wide range of symptoms. Celiac disease symptoms include the following:

At the severe end of the celiac disease symptoms spectrum, toddlers will fail to thrive, will have a bloated abdomen and wasted muscles in the thighs and buttocks. Making the diagnosis in these children is relatively easy.

At the other end of the spectrum, children may just complain of tummy pain as the only celiac disease symptom.

Children can also have iron deficiency that does not respond to iron supplements - this is because the gut can't absorb the iron.

Children with celiac disease are often miserable and irritable after eating gluten-containing foods. Their parents often remark how much happier they are when the diagnosis is made and they no longer have gluten in the diet.

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How is Celiac Disease Diagnosed?

The gold standard for diagnosing celiac disease is seeing characteristic findings when the gut is biopsied during a procedure called a small bowel biopsy. The gastroenterologist who performs the biopsy will often see a characteristic pattern on the lining of the small bowel but the diagnosis is confirmed by the pathologist who looks at the specimens under a microscope.

The characteristic findings on biopsy are villous atrophy and crypt hyperplasia - this just describes the flattened and thickened gut lining.

Blood tests can suggest a diagnosis of celiac disease and these are usually performed first. The test that is best is tTG (tissue transglutaminase). This is an IgA type of antibody and the total IgA is also measured at the same time. In the occasional person who has a deficiency of IgA, the tTG test could be negative even in people with celiac disease and in those cases an IgG tTG can be measured. An elevated tTG is highly suggestive of celiac disease which is then confirmed on biopsy. Infants less than 2 years can have blood tests which are less clear so they may need a biopsy even if the blood tests are not suggestive.

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My Child has a High Anti-Gliadin IgG - does this mean celiac disease?

No. The anti-gliadin IgG can be high in children who do not have celiac disease and it is not a good guide. Many doctors don't even test for this anymore because it is not a reliable measure. Many normal children will have an elevated anti-gliadin IgG test.

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Who Gets Celiac Disease?

Celiac disease is thought to occur between 3 to 13 per 1000 children. Most children have celiac disease symptoms.

There are some conditions where celiac disease occurs more frequently and these include:

  • dermatitis herpetiformis
  • type 1 diabetes
  • immunoglobulin A (IgA) deficiency
  • Down syndrome
  • Turner syndrome
  • Williams syndrome
  • children with a first-degree relative with celiac disease

Children with any of the above have routine testing for celiac disease.

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Is there a genetic test for celiac disease?

There is a genetic test, looking at HLA DQ2 and HLA DQ8 which are inherited gene markers. However, the test isn't good at diagnosing celiac disease or predicting who will get celiac disease.

If the test is negative, though, celiac disease is highly unlikely even if the child has celiac disease symptoms.

The DQ2/DQ8 test is therefore performed when the diagnosis is not clear or when the tests are difficult to interpret, and in those cases, a negative test is most informative.

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How is Celiac Disease Treated?

Celiac Disease is permanent and treatment is life-long gluten-free diet. It is important that the diet is adhered to life-long to prevent later disease of the gut, including a type of cancer, which can occur in untreated celiac disease.

It is best to see a dietician to discuss the gluten-free diet, as it can be a challenge. Once on a diet, most children lose all their celiac disease symptoms and thrive.

Once the initial celiac disease symptoms have settled, most children with celiac disease will manage to eat oats without problems - this can make breakfast easier!! However, this is only true in countries where there are dedicated oat growers (like the United States and United Kingdom). In other countries like Australia and New Zealand, oats are grown with other grains and so there may be cross-contamination and so oats should be avoided.

Check with your national guidelines on what foods can be eaten. Some countries allow low-gluten foods (those with less than 20mg gluten/100g of food) to be eaten by those with celiac disease.

Further information can be obtained by using the appropriate link in the Useful Resources section at the bottom of this page.

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How is Celiac Disease Monitored?

While children are growing, it is important to monitor growth and this can be done yearly. Yearly blood tests for tTG are also useful to monitor how well the diet is being adhered to. The blood tests can be done 6 months after diagnosis and then yearly. In toddlers with severe symptoms of celiac disease growth monitoring is most important. If there are celiac disease symptoms, then you should also see your doctor.

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What is Gluten Sensitivity?

Some children have celiac disease symptoms, like abdominal bloating and pain, and these symptoms improve when they go on a gluten-free diet. Despite this, all the tests for celiac disease are normal, including small bowel biopsy.

We say these children have gluten sensitivity but not celiac disease. This is like a "gluten allergy" and like other allergies, some children may "grow out" of this tendency or may be able to cope with some forms of gluten or small amounts of gluten. It is worth a trial of some gluten from time to time (say every six months or so) to see if your child copes. Usually some gluten can be tolerated so the full gluten-free diet (which can be difficult to adhere to) is not needed.

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Useful Resources

  • National Organisations - have information on gluten-free diets and food labeling

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References

  • Hill ID et al. Guideline for the diagnosis and treatment of celiac disease in children: recommendations of the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition. J Pediatr Gastroenterol Nutr 2005 Jan; 401):1-19

To go to the top of the Celiac Disease Symptoms and Treatment page, click here

To go to the Diarrhea page, click here

To go to the Pain page, click here

To return to the Home page, click here


Last reviewed 27 June 2012

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Dr Maud MD

Dr Maud MD (MBChB, FRACP, FRCPCH), a specialist pediatrician, provides health information and medical advice for parents of babies and toddlers. Read more about Dr Maud.



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