Shirley Desrochers knows the pain of celiac disease all too well ‑ the cramping, bloating, misdiagnoses and other gastro-intestinal issues.
Even more agonizing at times, however, is the lack of support for those who suffer from gluten-related illness.
Desrochers was part of a close-knit support group in Alberta before moving to Sarnia in January of 2014. Once here, she missed the close ties formed in that group. So, after realizing nothing existed in Sarnia, she got together with two other women to start the Sarnia Celiac Support Group.
“It’s an informal group, where we get together and share stories and just share with people who can understand your experiences.”
Celiac disease is a permanent intolerance to gluten, a protein found in wheat and wheat products. It is hereditary and affects as many as 1 in 150 people.
Desrochers was diagnosed through a blood test. She underwent screening after her sister contacted family members because her child had tested positive for celiac.
“Five of us in the family have it.”
But warning signs were there long before, she says.
“I was always sick. I couldn’t stand upright because I was in so much pain.”
She had previously been misdiagnosed with Irritable Bowel Syndrome (IBS), a common disorder that affects the large intestine and causes cramping, abdominal pain, gas, diarrhea and constipation.
When Desrochers cut gluten from her diet she began feeling better immediately.
“After two weeks I was a totally different person,” she says.
But managing celiac is more difficult than eliminating bread. Many food products contain gluten that isn’t labeled, and health products, like toothpaste, can contain gluten.
Even when food ingredients are gluten-free, cross contamination is a lingering concern.
“People don’t think about that, that you can’t use a utensil from one dish to serve another.”
Desrochers says sufferers need to educate themselves, which is where a support network can help. Members compare symptoms and share stories, recipes and literature.
They understand how hard it can be to enjoy a night out, whether at a restaurant, or as a guest with family or friends.
“It’s almost like preparing a baby to go on a trip,” she says with a laugh. “I’ve always got gluten-free bars in my purse.”
Food companies today are offering a growing assortment of gluten-free products, but many don’t taste very good, she says.
“It is a challenge. I don’t wish it on anybody.”
The Sarnia Celiac Support Group meets the 4th Thursday of the month at Junior Baker, 159 Lochiel St., from 7 p.m. to 9 p.m. For more, email [email protected] or visit the Sarnia Celiac Support Group on Facebook.