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Column originally published Nov 6, 2001

Daughter With Celiac Disease Need To Stay On Gluten-Free Diet

Question: Our daughter was diagnosed with celiac disease when she was ten-months-old. She did very well for a long time, and complied with the special gluten-free diet. She is a teenager now, and we are having trouble keeping her on this diet. Is there any danger to her health if she cannot stick to it?


Before I answer your question, I need to explain to the rest of the readers about celiac disease first. Without an understanding of this condition, it is hard to see why anyone should adhere to this rather restrictive diet.

Celiac disease is a medical condition where the absorptive surface of the small intestine is damaged by a substance called gluten. Gluten is a protein that is found in wheat, barley, and rye. A similar protein is also found in oat, but research has shown that this protein may not be as toxic to the intestine as the other three grains that I have mentioned.

Whether a person will develop celiac disease or not depends partly on their genetic makeup, and partly on environmental factors. Recent research shows that individuals carrying certain genes have a much greater chance of developing celiac disease than the general public. Infection with adenovirus type 12, a virus that causes vomiting and diarrhoea, can set off celiac disease in those who are genetically programmed to develop this condition.

For many years, celiac disease was thought to be a childhood illness only. Most patients are young children presenting with diarrhoea under two years of age. When solid foods are introduced into their diet, they are naturally exposed to grains from wheat, barley, and rye. The gluten in these grains causes damage to the absorptive surface of the small intestine. This results in most foods not being digested or absorbed properly. Sometimes parents would notice pieces of undigested food in the stool, although the majority of children present with severe and persistent diarrhoea. The abdomen is often distended, and they lose weight, and appear emaciated. They also suffer from abdominal cramps, which make them irritable and unhappy.

Sometimes these symptoms progress slowly, and parents may not recognize their children are sick until their regular check-up, when their doctors notice either a significant weight loss, or lack of weight gain. The symptoms of diarrhoea and irritability may have been attributed to a whole list of everyday ailments, including teething.

Fortunately, in the last few years, routine blood tests are available to assist doctors in the diagnosis. These tests are accurate in over 90% of those with untreated celiac disease. A small percentage of patients will have negative blood tests.

As you already know, and I will address that later, children with celiac disease have to stay on a gluten-free diet for life. As a result, it is very important to establish the diagnosis at the beginning, by doing endoscopy and biopsy. Endoscopy is a procedure where a physician inserts a tube through the mouth into the stomach and intestines to look inside for abnormal findings. In severe celiac disease, the small intestine will appear abnormal on this examination.

However, the doctor also needs to take a very small piece of the intestine for examination under the microscope, this is called a biopsy. The inside wall of the small intestine has a very characteristic finding in celiac disease. This is the most reliable way to establish the diagnosis.

Since the discovery of blood tests, celiac disease is recognized to be much more prevalent than being a childhood illness. It was determined that about one out of 250 people in North America and Europe have this condition. Most of them likely have intermittent diarrhoea and do not seek medical advice. Adults diagnosed with celiac disease are usually in their 40s and 50s. Once diagnosed, they have to go on the gluten-free diet also.

Gluten-free diet is essentially a diet without wheat, barley, and rye flour. Although it sounds easy, it is actually very difficult to adhere to. Gluten is present in most foods in the North American diet. Unfortunately, many manufacturers also use gluten in processed foods. Parents and patients have to read all labels when they buy food in cans or boxes. Occasionally some safe foods may be contaminated with a small amount of grain that contains gluten, which explains why the disease can recur even with strict diet control.

When gluten-free diet is initiated, most children (and adults) will improve within about two weeks. I should mention here that at the beginning, it is advisable to avoid oat, although many children can handle a small amount of oat later on. It is also important to avoid milk; the damaged intestine cannot digest and absorb lactose, the sugar that is present in milk.

When the child gets better, he/she becomes happier, the diarrhoea stops and stool returns to normal texture and frequency. The distended abdomen flattens out, and the child puts on muscle and fat. With adherence to gluten-free diet, children with celiac disease will grow up normally.

Teenage years are probably the toughest ones in anybody’s life. There are issues with self-image and self-identity. Many teenagers do not want to be different from their peers. If they have adhered to the gluten-free diet throughout childhood, they would not remember any of the symptoms associated with celiac disease. Therefore, it is very tempting for them to cheat, eating the same food that all their peers are having.

Unfortunately, the problem of not adhering to the gluten-free diet is more than just abdominal cramps and diarrhoea. Because of the damage to the absorptive surface of intestines, other important nutrients, including vitamins, calcium, and iron, would be lost. They may experience additional illnesses because of these deficiencies.

Recent research also shows that children and adults with celiac disease and not sticking to the diet have a much higher chance of developing cancer compared with the general population. The most common one is lymphoma, which is a cancer of the lymphatic system. This is another important reason why those with celiac disease need to stay on gluten-free diet for life.

It is definitely not easy for your daughter to deal with celiac disease at this age. Both of you should discuss the diet issue with your doctor and a qualified dietician. You may also need to look into counselling with a psychologist. You can also find additional information at the Canadian Celiac Association website: