A diet for life

For people with celiac disease, good health doesnt come in small pill packets.

Its what they dont consume thats important.

There is no medication other than a gluten-free diet. Theres no taking a pill three times a day and do whatever you want, says Elaine Johnstone of Stratford, who has been living with celiac disease since childhood.

Gluten is a protein found in grains, including wheat, rye and barley. People with celiac disease, which is a genetically based autoimmune disorder, are sensitive to gluten, which damages the villi of the small intestine. This affects the absorption of food and can lead to symptoms such as weight loss, diarrhea, abdominal pain, bloating and anemia-iron, folate or vitamin B12 deficiency.

Celiac disease can also manifest itself as dermatitis herpetifomis (DH), which is characterized by a blistering, intensely itchy skin rash.

The only treatment is a strict gluten-free diet for life.

Although Johnstone was diagnosed as a child, she was incorrectly told shed outgrown the disease years ago so she went off her gluten-free diet.

She was still plagued by an upset stomach, but three years ago her symptoms escalated rather rapidly. Blood tests and a biopsy about a year later confirmed that she had no villi in her small intestine.

The gluten attacks the villi and the villi is what absorbs (the nutrients), says Johnstone, whose weight plummeted by 18 kilograms (40 pounds).

My body was just not absorbing anything. My vision was starting to be impaired because I was lacking vitamin A, which helps with your eyes.

When I did eat anything with gluten in it, my stomach would literally swell up and Id look like I was four or five months pregnant.

And so Johnstone started from scratch, determined that she was going to eliminate gluten from her life. It hasnt been easy, especially when trying to avoid cross-contamination with gluten-containing products.

Going gluten-free is a big challenge until one becomes used to it and then its just a way of life, says Jean Eldershaw of Morell, past president of the Canadian Celiac Association, Charlottetown chapter, and now the Atlantic regional director on the national board.

But then there are times its like you just want to be able to eat like everybody else. Like how nice it would be to pick up a pizza! she admits with a smile.

Things have changed dramatically since Eldershaw was diagnosed 17 years ago.

Even the ingredients that are available today werent available then, she says.

Life is much easier but its expensive. You can buy products but you have to pay for it.

There is also a lot of work to be done in terms of labelling of products so that gluten is clearly identified as an ingredient.

Sometimes you might see seasoning or you might see a form of starch. It might not specify whether it was cornstarch or wheat starch (the latter of which would contain gluten).

Cross-contamination could be as close as the butter knife.

Everyone in our family knows how to drop the jam from the spoon, not to touch the bread because then there would be breadcrumbs (going into) the jam, Eldershaw says.

For people newly diagnosed, its a major lifestyle change because much of social life revolves around food.

I guess the thing is you always have to plan. And I cant just go into a restaurant and order off the menu; I have to ask questions and make sure that they understand what I can and cannot have, she adds.

Restaurants are getting better and better, and even some of them have items that are gluten-free, but you still want to make sure that they understand the contamination thing too.

When people are newly diagnosed, they have the option of contacting a trained celiac association peer counsellors who has been living with the disease for a number of years.

They are there for support, information and can point out the resources a person needs to live with celiac disease.

I think the most valuable thing is that you actually sit down with someone who has been through this and understands where youve been and they know all the little places that you can get caught up, Eldershaw says.

A peer counsellor helped Johnstone over the hump. In addition, while she has cut back on some social eating outings, she has shifted her focus to a variety of outdoor activities, such as cycling, riding a motorcycle and running marathons, including a Miami marathon in January and the upcoming Cycling for Celiacs on Sunday, Oct. 14.

Ive become more active, doing things that I never thought Id do.



Fundraising at a glance

n What: Cycling for Celiacs, bike, walk or run.

n When: Sunday, Oct. 14.

n Why: Cycling is a fun event to promote awareness and raise funds for the local chapter of the Canadian Celiac Association and the national association.

n Where: Various portions of the Confederation Trail.

n Start times: 12 p.m. at the trail on Brackley Point Road for bikers doing the 40-plus kilometres; 1:30 p.m. at the trail at Mt. Stewart for bikers wishing to do 15 kilometres; 2:45 p.m. at the trail at Mt. Stewart for walkers who want to walk to Morell; 1:30 p.m. at the Morell Welcome Centre for walkers who wish to walk a short distance. Runners can choose their start times.

n Wind-up celebration: 3 p.m. at the Morell Fire Hall with gluten-free food.

n Other information:?All bikers are required to wear helmets. This event is open to everyone. Pre-registration by Friday, Oct. 12 is required for transportation back to vehicles. Participants are asked to collect pledges or make a donation. T-shirts will be given for a $20 donation or $100 in pledges.

n Contact information: Jean at 961-2066 or jeaneldershaw@eastlink.ca.?