Soon after my birth I mysteriously began to die
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.
When I discovered that I had celiac disease at the age of 22 there were no gluten-free foods available. The doctors thought celiacs grew out of it at five to seven years of age. Many doctors today still believe that celiacs grow out of this disease and can be gradually weaned onto a normal diet. When I was put back on a normal diet, on my doctor's advice, I became thin, sickly, missed a lot of school (especially in the winter) and had bouts of depression off and on for years. I either cried a lot or got angry.
One doctor in Prince George, BC, tells his celiac patients that if they eat a little gluten every day it will build up their immunity to the disease. What it will do is keep the disease activated and the person ill! Another doctor on a local radio station told a listener recently that his malabsorption problem could be a tumour. It's possible, but "malabsorption" is a major signal word, so why not tell this person that it could be a tumour, but he should have a screening for celiac disease as well?
Doctors try to thwart blood screenings for celiac disease because it costs money. Compared to all the other office visits and tests done on a celiac, this is not a viable argument.
My mission is to educate the public and the medical establishment (including those in alternative medicines) about celiac symptoms and the importance of early diagnosis of celiac disease. There is no need for us to suffer and for such long periods of time.
Dietary Recommendations for Celiacs
Celiacs should experiment with foods including new varieties and new methods of cooking. This doesn't have to be a narrowing culinary experience. It opens a door to greater nutrition when we experiment. And for those who want only to be able to eat what they have been eating all their lives, that's also possible.
It's important for everyone, especially a celiac patient, to eat as much whole, organic food as possible in order to get maximum nutrient absorption. For example, using organic brown rice flour as opposed to refined white rice flour. Whole foods are always preferable.
Eat a variety of celiac-friendly foods in all categories. There are a number of flour alternatives like rice, tapioca, potato, pea and bean flours. Psyllium or milled, organic flax also adds fibre. Add whole grains, legumes and pastas to salads. Beans are an inexpensive way to get both protein and fibre. Bean salads are delicious. Add beans to casseroles or just include more Mexican dishes to your cuisine. Remember to include peas, lentils, nuts and seeds. Stir-fries, salads, muffins, cookies and cereals are a good way of adding these to your diet.