After more than 10 years of countless doctor visits and an endless string of medical tests, Ruth Lambe finally had her diagnosis.
Ruth Lambe recounts her lengthy journey to diagnosis.
- Katie Tower, Sackville Tribune 1
It was the early 1970s and Celiac Disease was not as well understood or as prevalent as it is today – so misdiagnoses were common. But Lambe was persistent.
“They thought I had everything imaginable,” says Lambe. “It was pretty scary.”
From arthritis to Multiple Sclerosis to various blood disorders and even doctors trying to tell her “it was in all my head,” Lambe says doctors just couldn’t figure out what was wrong.
Throught it all, Lambe was constantly battling fatigue, nausea, diarrhea, and severe muscle weakness, especially in her legs. Some of these symptoms had first begun to appear during her high school years, when she noticed she was tired a lot and started having problems with her muscles and joints, but then worsened into her 20s. She began losing weight even though her eating habits hadn’t changed and began feeling nauseated more and more often.
- It took more than 20 doctors – a slew of general practitioners and specialists – and several lengthy stays in hospitals in Saint John and Moncton over a 10-year span where she endured tests after tests, which included x-rays, scans, iron injections, B12 injections, bone marrow testing and biopsies, before she finally came across her savior – Dr. Langley in Halifax.
After having her first initial consultation with Dr. Langley, he believed he had detected what was wrong with her. But to confirm his diagnosis, he would need to put her in the hospital for a month. Although Lambe was hesitant about another lengthy hospital stay, she decided to go ahead; she was immediately put on a non-restricted diet and told to eat everything she wanted, all the while going through lots of tests and biopsies. When she left the hospital after that first month, she was released on a gluten-free diet, to be followed for six weeks before returning to see Dr. Langley.
She recalls when she left the hospital that day, she had to be assisted out as she could not walk on her own, her muscles had become so weak.
Staying off gluten was tough, says Lambe, as there were very limited options back then for those with celiac or gluten intolerance. She ate a lot of raw potatoes and fruit, but says it was a challenge to stay away from bread, crackers and sweets.
Six weeks later, however, even after thinking she might starve to death on the gluten-free diet, she walked into the hospital on her own, surprising the doctor and the interns.
- With her Celiac diagnosis in hand and on her path to a new gluten-free lifestyle, Lambe began to see significant improvements continually over the next couple of months and was soon turned over to a doctor in Moncton, where she lived at the time.
He was the one who informed her about the Moncton Chapter of the Canadian Celiac Association, a “blessing,” she says, as it has provided her with much-needed support over the years and an endless string of information and new recipes.
Lambe says she was grateful to finally get a diagnosis after such a “long haul” but admits it certainly wasn’t easy making the switch to gluten free. There were very few gluten-free products on store shelves in those days and not a lot of information available to help get her started. So she loved having the support from people who understood her disease and knew what she was going through.
That was 47 years ago. Fast forward to today and the gluten-free options have multiplied, with new foods hitting the market almost every week.
Lambe says from biscuits to muffins, from cookies to bread, and even pasta, her menu has significantly diversified over the past 10 to 15 years and she is so happy with all the “tasty” options that are now available.
- For those who’d like to know more about the variety of gluten-free products and services available in the region, Lambe encourages people to attend the upcoming Gluten Free Fair, an annual event hosted by the Moncton Chapter of the Canadian Celiac Association. She says it’s a great opportunity to “try something before you buy it” as many of the suppliers and vendors provide samples of many of their products.
Sackville’s Sheila Parker is the vice-president of the Moncton chapter and one of the organizers behind the event, now in its fourth year. She says the Gluten Free Fair will be held this Saturday, June 2 at the Coverdale Recreation Centre in Riverview from 10 a.m. to 3 p.m. and will allow families and individuals eating gluten-free to discover new products, educate themselves and even save with offers from local businesses. It will feature dozens of vendors, including Sackville’s own Cackling Goose Bakery and Knuckles Truffles Chocolates.
The Facts About Celiac Disease
• Celiac disease (CD) is a common disorder that is estimated to affect about one percent of the world’s 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. Typical symptoms may include chronic diarrhea, abdominal pain, malabsorption and weight loss. However, many patients now present with atypical symptoms including anemia, osteoporosis, extreme fatigue, and more.
• At present, there is no permanent cure for CD but it can be effectively treated with a gluten-free diet. The adherence to the gluten-free diet must be strict and lifelong.
– SOURCE: Canadian Celiac Association