This month, we’re showcasing the Celiac Association, which was founded in 2018, under the patronage of the Governor of Riyadh, His Royal Highness Prince Faisal bin Bandar Al Saud, in a bid to spread awareness about the condition and help those affected by it.
Supporting those in need
The Celiac Association is a non-profit organisation that seeks to improve the quality of life for thousands of people living with the disease in Saudi Arabia. As well as raising awareness and supporting research into the condition, the association provides essential services and programs that have a meaningful impact on the lives of its beneficiaries.
Obeid Alkethami, the association’s project coordinator, says the charity plays a vital role in helping people understand their diagnosis. “We run awareness campaigns targeting students in schools and universities as well as public campaigns aimed at families”, he explains.
“Another focus of our work is helping people with the disease adjust to their new lifestyle. We regularly host community clinics with dietitians who meet with celiac patients to ensure they’re coping with the strict gluten free diet, and are managing the symptoms of the disease. We also organize free cooking classes and provide discounts at well-known bakeries or restaurants from time to time.”
What is celiac disease?
People with celiac are immune to gluten, which causes serious complications in the digestive system. Not to be confused with gluten intolerance, which results in short-term stomach cramps and bloating, celiac disease must be controlled by strict adherence to a gluten-free diet.
“It’s quite common for people to confuse celiac disease with wheat allergy, even though they are vastly different,” says Obeid. “Celiac disease is an auto-immune disease where the body’s immune system is triggered by gluten, which can be found in wheat, barely, or rye.
“Wheat allergy, however, is a normal immune response to any of the proteins that can be found in wheat, and people with wheat allergy can usually eat gluten from non-wheat sources,” explains Obeid.
When a person with celiac ingests gluten, the body’s immune system produces antibodies to destroy it, leading to damage and inflammation of the small intestine. If left untreated, complications, such as osteoporosis, thyroid disorders, neurological conditions and impairment to the liver and kidneys can occur.
This is further complicated by the food industry’s widespread use of gluten and its derivatives as a thickening agent and flavour enhancer in thousands of everyday food products.
Symptoms and diagnosis
There are more than 200 symptoms of celiac disease, although the number and severity of these will vary between patients. The diagnostic process usually begins with a test to check the levels of antibodies in your blood, which if high, is followed by a biopsy of the small intestine.
Common symptoms may include:
- chronic diarrhoea
- stomach cramps
- unexplained weight loss
- unexplained tiredness and fatigue
- joint or bone pain
- swelling of the face or throat
- problems with coordination and balance
For nursing intern, Ghadeer Ahmad Alzahrani the first indication that something was wrong came when she unexpectedly lost 11kg in weight in one month. Although she didn’t have any other symptoms, Ghadeer suspected it may be due to Celiac as her sister had previously been diagnosed with the disease.
“I insisted on a blood test which confirmed a high level of gluten protein, and this was followed by an enteroscopy, to examine the small bowel, which confirmed my diagnosis,” explains Ghadeer. “Luckily, my diagnosis was quite straightforward, as I knew I was at risk because it’s hereditary, but people are often misdiagnosed, or they pass off their symptoms without finding out what’s causing them.”
Ghadeer controls the disease with a strict gluten-free diet and attends a gastric clinic every six months for blood tests to check her gluten levels.
Living with the disease has had a huge impact on her life, and there are times when she’s reluctant to go out as she has to prepare gluten-free food in advance. “I often use recipes and advice I’ve picked up from the Celiac Association,” she says. “It’s helped me a lot! Everything I need to know about the disease and how to cope with it, I find out from here.”
Find out more
The purpose of the Celiac Association is to spread awareness about the condition and help those who suffer with it.
Fundraising is vital to support ongoing research into the disease, and enables the association to host events within the community, such as the Gluten Free Products symposium, attended by Italian chef Fabrizo Barontini, and participate in the Saudi International Bakery and Pastry Exhibition in 2019.