After a pre-pandemic, spontaneous sushi lunch with her friends, Noura Hersh felt sick. It wasn’t the feeling of eating too much or too fast, but the tell-tale way of saying Hersh had accidentally ingested gluten.
“Usually accidents happen when you’re more spontaneous,” says Hersh via video call from her home in Toronto.
Hersh, 26, has celiac disease, an auto-immune disorder where the lining of the small intestine is damaged by a protein called gluten, which is found in wheat, rye and barley.
Even though she had read over the ingredients in the poke bowl she was ordering, Hersh still experienced symptoms of being ‘glutened’— a colloquial term to describe when a celiac accidentally ingests gluten.
Although the dish itself did not contain wheat, rye, or barley, it is likely that it was subject to cross-contamination. This can happen if proper hand washing is not followed by cooking staff, utensils or pans are not washed thoroughly or if gluten-free food is prepared in close proximity to gluten-containing food.
The next day, Hersh was struggling.
“I ended up leaving work early because I couldn’t even focus,” says Hersh.
Gluten exposure affects every celiac differently. Typical short-term symptoms include diarrhea, bloating, abdominal pain and extreme fatigue. In the long run, celiacs can be at risk for malabsorption, weight loss, anemia, osteoporosis and more.
For Hersh, a one-time gluten exposure leaves her feeling drowsy.
“I need to just get home and hit my bed and pass out,” she says.
Hersh is a registered dietitian (RD) who is currently working with Calgary-based Ignite Nutrition Inc., a company that offers personal nutrition counselling, on their expansion out east.
When she was working through her internship to become an RD about three years ago, Hersh was experiencing constant diarrhea and losing weight. Being in touch with her body and having an education in nutrition, she knew that something wasn’t right.
“In my head, I’m thinking it’s celiac, it’s inflammatory bowel disease, it’s IBS [irritable bowel syndrome], like it has to be something more serious,” recalls Hersh.
Hersh’s background in nutrition led her down a path that is not common or recommended for the average person experiencing symptoms of celiac disease.
One day, Hersh decided to cut gluten out of her diet. Because she is a registered dietitian and has substantial knowledge of the condition, this was a good decision for her.
However, someone who is not registered in nutrition or gastrointestinal conditions should not make this choice without medical advice. A gluten-free diet should be undertaken following the advice and supervision of a medical professional.
“If you are not a dietician and you’re not completely aware about celiac or gluten, I would definitely advise you to seek out a dietitian’s support,” says Hersh.
After cutting out her morning oatmeal, Hersh had her first regular bowel movement in over a month. Although oats themselves are gluten-free, they are often processed in facilities that also make gluten-containing cereals and other products, which leads to cross-contamination. However, there are brands that do make GF-certified oats.
This confirmed her suspicions and led her to book an appointment with a specialist.
There are generally two steps in the diagnostic process for someone who is a suspected celiac.
First, a blood test is done to look for the presence of the IgA-tissue transglutaminase (TTG) antibody or the endomysium (IgA-EMA) antibody. High levels of either of these indicate inflammation and high probability of celiac disease, which would likely move the individual to the next step in the diagnostic process.
Following a positive blood test, a doctor will recommend an endoscopy and small intestinal biopsy. This allows them to see any inflammation that may be present in the small intestine and for samples to be retrieved for microscopic examination.
The individual who is having these tests done must be consuming gluten for maximum accuracy.
Before she cut out gluten entirely, Hersh was able to get in for her bloodwork. All of her tests came back positive, which prompted the wait for an endoscopy.
During her three month wait to have her biopsy, Hersh made the choice not to eat gluten because of the way it made her feel and the damage she knew it was doing to her body. But because of this, her results were not exactly right.
“It looked great, it looked like there was no celiac, it looked perfect,” says Hersh.
A strict, gluten-free diet allows the small intestine of a celiac to heal, erasing all traces of previous damage. This is why Hersh’s scope looked the way it did.
Despite this, Hersh and her gastroenterologist came to the conclusion that she was indeed celiac, due to her positive blood results and the resolution of her symptoms while eating gluten-free.
She now adheres to a strict gluten-free diet, the only known solution to celiac disease at this time.
This has changed several aspects of Hersh’s life and has made her a planner in every aspect. She does lots of meal planning and prepping ahead so that she has safe and healthy meals ready when she needs them. When Hersh is going out to a restaurant, she tries to look up the place beforehand and see what they have to offer and if there are safe options for her.
“[Celiac] changes you in a way where you realize you’re not invincible, things happen and you have to take care of yourself,” says Hersh.