Weston Davis wasn’t right. Something was wrong, and the Caledon East boy was deteriorating in front of his parents’ eyes.
- by Matthew Strader, caledonenterprise.com 1
A raft of doctors, tests, treatments, medications, clinic visits, and Weston wasn’t improving. That is, until a diagnosis of a disease the world is building awareness of saved his life and changed him and his family forever.
“It was the best day of our life,” said Sean Davis of his and his wife Amy’s second child. “The day our son got diagnosed with a disease.”
The story began on Weston’s first birthday and his switch to solid foods. Weston threw them up. And he vomited every single day for the next eight months.
At first, the Davis’s were told it was a one-week virus, and then a two-week virus, but Weston didn’t improve.
“There was something about it that we just didn’t feel comfortable putting it off as a virus,” said Davis. “So we switched doctors. Kept looking.”
Dr. Rita French in Orangeville, who Davis said has been amazing throughout their ordeal, took over. But Weston kept throwing up. As time went on, he stopped meeting his milestones.
“At that age, you’re month by month with them, right? Looking at what they can do, the weight they’re putting on. He wasn’t doing any of it.”
Their doctor sent them to a pediatrician — more tests. Weston, meanwhile, wasn’t living the life of a child. Put him in a room with other kids and he would sit slumped in the corner, not moving. He wasn’t putting any weight on, and eventually, wasn’t growing.
“It was awful, just awful. It was hell,” Davis said. “Sleeping was impossible, we just thought of it every night. Something is wrong with our son. And we have 100 per cent faith in our doctors and that they cared, but they couldn’t figure it out. None of us could.”
They continued working with the pediatrician, but at Christmastime of that year — six months since Weston’s July birthday — they reached a breaking point. They went to SickKids emergency two days before Christmas, at their low point as parents, Davis said. They felt they had no other option.
“And we were told it was probably a virus,” Davis said. Options began to be explored though. It was suggested it might be allergies, but an allergist appointment was too far off. They visited another pediatrician, and for the first time, got the suggestion they should test for Celiac. The disease requires a two-stage test — a blood test for the possibility, and a biopsy of the intestine to confirm.
The blood test showed Weston was off the charts when it came to possibly having Celiac. It was now February, and they felt they had their answer and were on an uphill climb for the first time. And then they were told the biopsy would be in April.
“But our son was failing to thrive. He was deteriorating in front of our eyes,” Davis said. So they wouldn’t wait. They went back to SickKids, and decided as parents, they were not leaving until they had an answer. A member of the gastrointestinal department saw their son and said simply, “Yup, that’s classic Celiac.”
An emergency biopsy a week later, and Weston had his diagnosis. The family became gluten-free, and three days later, Weston had a complete turnaround.
“It was incredible,” Davis said. “It sounds funny, but like I said, that was the best day of our lives. The day our son got diagnosed with Celiac disease, because as parents, then, we could fix him, we knew how to take care of our child.”
The entire family has become gluten-free, papa Davis himself diagnosed with the disease after doing his own tests. It turns out, Celiac has an on switch, something researchers are still trying to figure out the intricacies of, and 80 per cent of those who have it, won’t know it.
So, the Davis pair, dad and son, are becoming ambassadors for the Canadian Celiac Association. Their goal is to raise awareness and educate others about the disease. While those whose switch hasn’t turned on yet can think they’re leading a healthy life, the disease can still be damaging their insides, leading to higher percentage chances they will develop other diseases, such as diabetes and cancer.
For the Davis family, however, it’s an easy change to make, after watching their son endure the worst before life got better.
“He’s my little hero,” Davis said. “Knowing everything he went through, and how hard the first few months of his life were. He’s the strongest kid we know and so happy now. We want to make sure others don’t go through this as well.”
One of the goals of the Davis family, and the association, is to see Celiac become a regular screening test for young children. As well, to change the fact that Ontario is the only province that does not cover the costs of these tests. Awareness, they know, is exactly what will lead to that.
“If our story will help that,” Davis said, “we’re happy to tell it.”
What is Celiac disease:
Celiac disease 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 crossbred 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.
The classical (typical) symptoms include chronic diarrhea, abdominal pain, malabsorption and weight loss. However, many patients now present with non-classical (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.
Eighty per cent of people with Celiac disease have yet to be diagnosed.
The average age of diagnosis is 45.
Ontario is the only province to not cover the costs of a Celiac screening test.
It is believed that one in 100 people have Celiac disease.
For more information, visit: www.celiac.ca
#GoBeyondTheGut is a new campaign of the Canadian Celiac Association.
Most people relate Celiac disease to gastrointestinal effects, said CCA executive director Melissa Secord, such as diarrhea and vomiting. But the disease can lead to a number of symptoms, including anemia, bone disease, elevated liver enzymes and neurological problems like migraines, short stature and reproductive problems.
“Iron deficiency anemia is now one the most frequent presenting problems in adults with Celiac disease,” said Dr. Mohsin Rashid, a professor of pediatrics, gastroenterology and nutrition at Dalhousie University. “It is important for patients and family doctors to check for Celiac disease when there is anemia and iron levels are low.”
“Delays in diagnosis can have serious health implications,” said Anne Wraggett, president of the Canadian Celiac Association. “In severe cases, there could be fractures due to weak bones and even cancer of the bowel.”
— Canadian Celiac Association