“I was sick my entire life, right from Day 1,” says Marilyn Lambert, when talking about the struggles of being diagnosed with celiac disease.
And it wasn’t until about 10 years ago that she was finally diagnosed with the dietary illness. Now, Lambert, Tenille Stringer, and so many others abstain from gluten — a group of proteins in wheat, rye, barley and their related grains — and they feel like themselves again.
Lambert remembers years and years of testing, being doubted and more suffering. She was told she had irritable bowel syndrome.
Her diagnosis came after a friend who was diagnosed with celiac disease recommended she get tested.
For Stringer, her family is what led to her eventual diagnosis.
About 11 years ago she didn’t really know about the disease, save for her father being diagnosed about five months before her.
“We didn’t realize the extent of what celiac was all about at that time, until – unfortunately – my dad had passed away (of cancer),” said Stringer.
Her father had recognized that bread was what was initially making him sick. Since his astute observation, through his own research, Stringer and two of her siblings were also diagnosed with celiac disease. It’s a genetic illness.
The transition for both Lambert and Stringer was a significant one. Changing one’s entire diet around avoiding even the slightest contamination with gluten remains a struggle for them.
While it isn’t an allergy, Stringer says it really needs to be treated like one. Even one crumb of bread can cause significant health problems — and the response is not an immediate visual one, like someone who has a peanut allergy, for example.
“The response is silent damage done long-term,” said Stringer. “The effects can cause auto-immune diseases and even cancer.”
It took years to get best practices, recipes and label reading perfected for them.
Stringer says now everyone knows to wash their hands and be particularly careful when handling gluten products.
“(At first) I was kind of shy about it,” remembers Lambert. “When I went to a restaurant, I didn’t want to make a big deal. I wouldn’t be as bold and ask everything about it.
“I’d take their word for it and (end up) getting sick.”
She says her embarrassment of being labelled as picky quickly changed when she realized her health was at stake.
“They say every day for a celiac is picnic day because you’ve always got to have something with you,” says Stringer.
And many restaurants have come a long way with proper food preparation for people with celiac disease.
And moreover, there’s better selection of products, labels are more comprehensive relating to gluten and products are generally less expensive.
Early on, Stringer says she bought expensive gluten-free granola bars which tasted like tobacco.
Both Stringer and Lambert say they’ve become used to their dietary restrictions. The food – and public knowledge – has improved.
“Once every blue moon there’s that piece of cake you look at and want,” says Stringer. “But for the most part it’s not that big of a deal anymore.”
Lambert says the thought of how sick something with gluten makes you is enough to dissuade the temptation.
Another support which didn’t exist when they were first diagnosed are Facebook groups both local and worldwide.
These types of groups can even offer tips, like best restaurants to eat at, and avoiding convenient, less healthy and more expensive pre-packaged food in lieu of knowing what to buy and prepare.
During this awareness month, Stringer says it’s important for people to know more about celiac disease. Many people present symptoms completely differently — everyone is different.
“When I went gluten free a lot of other symptoms I had no idea were related (to it) disappeared,” added Lambert.
She says arthritis, psoriasis and sinusitis all cleared up after addressing her celiac disease.
It can even affect your mood. During her entire life Lambert says she’s dealt with the feelings of depression, being in a fog and more.
She even recalls times when her frequent sickness was simply blamed on “nerves.”
“(As a child) I was always considered cranky … Afterwards, it was like a weight or cloud (lifted). I feel good!”
So for those who are struggling with their health, it’s important to be proactive.
Stringer says her teenage son makes the choice to refrain from eating gluten because of the way it makes him feel. He doesn’t have a formal diagnosis, but he still tends to stay away from bread and grains. Lambert’s daughter is doing the same.
It’s more common today. More people are aware of it. Stringer and Lambert are just a couple cases of hundreds in small communities.
Lambert says you can take your health in your own hands and change a host of possible problems.
“Don’t be afraid to keep trying to get diagnosed.”
What is celiac disease?
Celiac disease (CD) is a common disorder that is estimated to affect about one per cent of the population.
It is a condition in which the absorptive surface of the small intestine is damaged by a substance called gluten. Gluten is a group of proteins present in wheat, rye and barley and their cross bred grains. The damage to the intestine can lead to a variety of symptoms and result in an inability of the body to absorb nutrients such as protein, fat, carbohydrates, vitamins and minerals, which are necessary for good health.
Patients with CD can present with a variety of symptoms. The classical (typical) symptoms include chronic diarrhea, abdominal pain, malabsorption and weight loss. However, many patients now present with atypical symptoms including anemia, osteoporosis, extreme fatigue, oral ulcers, liver enzyme abnormalities, constipation, infertility, dental enamel defects, neurological problems, etc. Children can present with short stature, irritability, vomiting, etc.
Celiac disease occurs commonly in patients with other autoimmune disorders such as thyroid disease and type-I diabetes. It can also run in families, both in first and second-degree relatives.
Since many patients with CD do not present with classical symptoms, delays in diagnosis can occur.
SOURCE: The Canadian Celiac Association www.celiac.ca