> Health and Disease > Allergies > food allergies

Soon after my birth I mysteriously began to die.

I was weakened by such chronic diarrhea that pieces of my intestine were being expelled. At the worst point our family doctor stayed up all night in our home feeding me a little water at allotted intervals for extreme dehydration.

I hadn’t the strength to cry. I was thin, bloated, anemic and in pain from cramping and gastroenteritis. But I was a fighter. When the doctor came in the morning my mother thought it would be to say he’d done all he could. Instead he told her that he remembered reading about these symptoms somewhere and went to look them up.

He later called my parents to inform them I had celiac disease (CD). My father had to buy the gluten-free formula I needed as I was not a breast-fed baby (it was the 1950s) and the formula I was on was killing me.

I am one of millions of people worldwide with life-long celiac disease. Although there is no cure, this disease is put into remission simply by taking gluten out of the diet.

Gluten is the protein found in wheat, barley, oats, rye and all the products they make their way into: bottled, canned and packaged foods, vitamins and pharmaceuticals, breads, cereals and pastas are the most obvious.

My illness was not used as a signal to the rest of the family that they may have this infliction as well, but it should have been. All of my four siblings and some of their children have some form of this disease. One sister has dermatitis herpetiformis, a more physically evident form of CD expressed as an itchy rash that is often misdiagnosed as psoriasis.

My mother might still be alive today if it had ever been a consideration during all her years of abdominal ailments. She was diagnosed with diverticulitis and then Hodgkin’s disease, which eventually took her life. Celiacs who eat gluten have a much higher chance of developing a lymphoma type of cancer (like Hodgkin’s disease) than the general population.
If a celiac eats gluten it damages the villi in the small intestine, rendering it flat and unable to absorb nutrients, resulting in a deficiency of vitamins A, D, E, K and B₁₂ as well as iron.

This sets off a multitude of symptoms, which vary from person to person. It ultimately leads to illness and malnutrition and leaves the celiac’s immune system so weakened as to be a candidate for terminal diseases.

Early Diagnosis Saves Pain & Cash

Why are doctors not taking this disease into consideration during diagnosis? The biggest reason seems that the information they have on celiac disease is outdated. They still believe it’s rare. So much money could be saved if doctors made an early diagnosis. The Celiac Association is making an effort to bring this about.

In British Columbia, for instance, there are approximately 5,000 doctors, including specialists. Yet it can take five to 11 years to get a diagnosis of gluten intolerance. Let’s say the celiac visits her doctor three to four times a year enduring test after test. Probably 50 per cent of these general practitioners and specialists received their information on celiac disease over 20 years ago and were trained when a CD diagnosis was only one in 15,000. They believe the disease is rare and don’t look for it. It can take years before a gastroenterologist ever sees one of these patients. It’s only in the last two to three years that research has shown the rate to be one in 250 in Europe and North America. At the Hamilton, Ontario celiac conference in April last year a new rate of one in 100 was proposed by Dr Markku Maki, an authority on celiac disease from Finland.

It’s estimated that the average celiac patient costs the health care system $3,000 before a diagnosis. That’s a lot of wasted money being spent by doctors and patients alike trying to remedy everything but the disease.

Misinformation Abounds

Leann Moir is a member of the Canadian Celiac Association’s chapter in Victoria, BC.

Source: alive #222, April 2001