Living with celiac disease a challenge

Faced with a lifetime of health and eating challenges, some people might buckle under the weight, but for the past 20 years I’ve watched my wife, Nancy, as she has bravely taken on the complications that come with celiac disease.

I remember when she was first diagnosed, Nancy was devastated but over the years I’ve watched with admiration and pride as she has adjusted her eating habits and changed her lifestyle to accommodate this disease that is now part of her everyday life. It hasn’t always been easy for her, but I’ve applauded her determination and courage in the face of these obstacles.

These days, it’s getting easier to live with celiac disease as there are many options on the market for those afflicted with the illness, but 20 years ago it was a challenge to find the right food Nancy needed to sustain her diet.

She required food products that would not make her sick, so grocery shopping became an adventure and forget about going out to eat at a restaurant. It just wasn’t happening back then as we couldn’t trust that she wouldn’t get sick from something she ate or through cross contamination.

Food watching became an everyday occurrence in our household and even today it’s still sometimes a challenge to enjoy a dinner out.

However, as I’ve said, the situation has improved greatly as more and more people are discovering they have celiac disease or some other food allergy that makes it difficult for them to eat anything containing gluten.

In turn, with that increased awareness, has come an increase in demand for glutenfree products. Thankfully, many food manufacturers and outlets have responded to that demand with products that address this serious health need.

Nancy has to eat gluten-free food not because she choses to, like some people. She — and many others like her — has no choice. She must do it or else she risks other health issues and consequences. I don’t speak for her, but I’m confident in saying that if she had another option, she would not choose to put herself through the headache of having to stick to an incredibly challenging lifestyle.

Receiving such a diagnosis that will impact your entire life and understanding that you’ll be dealing with the problem for the rest of your life can be upsetting, but celiac disease has become much easier to manage than it was in the past. There are many gluten-free products that make gluten-free eating much less of a challenge, so we’ve seen things improve in recent years.

Despite the improved education and promotions in recent years, however, many people still don’t know much about celiac disease so let me help you.

According to the Canadian Celiac Association, celiac disease is an autoimmune disease in which the immune system no longer recognizes gluten. When gluten is eaten, it sets off an autoimmune response and the absorptive surface of the small intestine (known as villi) is attacked and damaged.

Continued deterioration of the villi can have many serious effects, including malabsorption of important nutrients such as protein, fat, carbohydrates, vitamins and minerals, which are necessary for good health.

It is estimated that one out of every 100 people in Canada is affected by celiac disease. Many of them are still waiting to be diagnosed. People of any age, from infancy through old age, can be diagnosed with celiac disease, and you don’t outgrow it.

The Canadian Celiac Association says one of the reasons celiac disease is often misdiagnosed is that there is such a wide range of symptoms. Common symptoms include anemia, chronic diarrhea, weight loss, fatigue, cramps, bloating and irritability. People may have one or more of these symptoms or they may have none and instead develop an intense burning and itching rash called dermatitis herpetiformis.

The intestinal symptoms of celiac disease may or may not appear in dermatitis herpetiformis. Dermatitis herpetiformis is controlled by medication and the glutenfree diet.

A definite diagnosis of celiac disease can only be made after performing a biopsy of the small bowel, which must be done by a specialist in the gastrointestinal field. That being said, the anti-transglutaminase (anti-ttg) blood test is often used first. This blood test is used to determine whether a small bowel biopsy is required, but it does not diagnose celiac disease.

Right now, celiac disease has no known cure. But it can usually be effectively treated and controlled.

That means sticking to a gluten-free diet for life. Anyone who has celiac disease must read the list of ingredients on all labels, every time they shop, to make sure products do not contain gluten. In addition to checking ingredients, they must also be aware of cross-contamination.

It can be a bit time-consuming, but it is important for people with celiac disease to carefully check the ingredients of everything they eat. And eating such a specialized diet can also have an economic impact as specialized, gluten-free foods are often much more expensive than normal products. For example, a normal package of hotdog rolls (with eight in a package) will cost, on average $2.99, while a package of gluten-free hotdog rolls (with four in a package) will cost $6.49.

You do the math, but you can see the financial implications of eating gluten-free to say nothing of the taste and the fact that most of these food items are kept frozen until they’re used, so freshness is almost certainly out of the question.

However, celiac sufferers have few options other than learning how to cope and adjust to their lifestyles to accommodate their new health reality.

Relatively speaking, awareness of celiac disease is not as widespread as it is for other afflictions, but it has been around for several generations.

However, there is an increased awareness these days as more and more people become diagnosed with the ailment. May is Celiac Awareness Month, a time when the Canadian Celiac Association works to raise the profile of celiac disease across Canada.

When faced with these types of challenges, a person has two choices — let the disease beat you or meet the challenges head on and find a way to cope as I’ve seen Nancy do for the last two decades, or at least that’s the view from here.