Although the gluten-free diet has grown in popularity in recent years, daily life remains very complex for people with celiac disease, for whom a tiny dose of gluten can cause many problems.
When she learned that she had this chronic autoimmune disease triggered by gluten consumption, in April 2011, Johanne Ouellet saw her life change forever. She and her husband Daniel had to drastically change their diet.
No longer able to consume gluten, Mrs. Ouellet cleaned out her pantry in addition to getting rid of her plastic dishes and cutting boards, in order to eliminate all traces of gluten.
“Some people choose to disinfect everything. We went with extreme caution because I had been very ill and we did not want to take any risks”, she explained in an interview with the QMI Agency, specifying that another solution was to to “turn to less processed foods”.
Despite everything, there are still difficulties, especially when traveling. While we are used to eating on the go when we are on long journeys, restaurants suitable for celiac people may be rarer.
“As soon as you leave the major urban centers, you have to look,” explained Johanne Ouellet, who assures us that it is more difficult to find “gluten-free” in the region.
According to her, people do not understand the real scope of the condition of celiac people.
“It’s a disorder of the immune system that takes gluten as a threat,” explained Christine Desjardins, nutritionist at the Celiac Quebec Foundation.
The body of people who are affected by this disease reacts excessively, which leads to inflammation in the intestine. Ultimately, the intestine can no longer effectively absorb nutrients from food and causes deficiencies in minerals and vitamins, explained Ms. Desjardins.
“People don’t understand how much it can affect us,” said Johanne Ouellet, adding that cross-contamination, however small, can make her very sick.
“Once at the restaurant they cooked Daniel’s regular pizza right next to mine without gluten. Just that was enough to make me sick,” she said.
Ms. Ouellet is not the only one in this situation. According to the Fondation Cœliaque Québec, more than 85,000 people in the province have this disease.
A recent study unveiled on Monday reveals that the impact on the social life of these patients is significant, so that 42% said they “have already suffered from a lack of understanding of their loved ones vis-à-vis the disease”.
Although an early diagnosis is favorable for the quality of life of the patients, it can pass a long time between the appearance of the symptoms and the diagnosis.
“It’s a chameleon disease, in the sense that there are more than 200 symptoms,” explained Christine Desjardins. Some have a lot of symptoms while others have few or none at all. This is why some people delay seeing a doctor.
In addition to this, delays in the health system are also a factor in the delay in diagnosis. In fact, to confirm the presence of active disease in a patient, a blood test and a biopsy must be taken while the gluten is in the body.
Although people with celiac disease are eligible for a tax credit, under certain conditions, the complexity of the process to qualify discourages many.
“Fiscal measures are not enough. So, even if there is a treatment, many patients continue to consume gluten involuntarily”, explained the nutritionist. Indeed, 77% of patients believe that the time taken to complete the documents is not worth the meager amount received.
“It would be nice if we had a [aide financière] just as a person with a disability receives it,” said Johanne Ouellet, who assures us that the financial aspect has a huge impact.
Since celiac disease is rather unknown to the population, people can turn, in addition to their medical specialists, to the federation whose objective is to “make their life easier” and “to ensure that their interests are defended”.
She was also a great help to Ms. Ouellet, who is now handing over to the next one. “I try to help everyone I know who is diagnosed with celiac disease,” she said.