Dubai: It has been a period of intensive learning and adjustment for 17-year-old Sarah Manoj, who received an unexpected diagnosis of coeliac disease last summer in Dubai.
A year on, Sarah has gone from knowing nothing about the autoimmune disease to becoming comfortable with her physical needs. The teen is now keen to create more awareness within the community about coeliac disease, and how people can support those affected, during Coeliac Disease Awareness Month, which is marked every May.
“I did not have any major symptoms, but my doctor decided to test for coeliac disease simply because my iron levels had always been low. When the results came back, I was confused because I did not even know what it really was,” Sarah told Gulf News.
Experts estimate that a large proportion of people afflicted by the autoimmune condition remain undiagnosed, and unaware, because the disease presents very differently in each individual. Despite this, every person with coeliac disease is at risk of long-term health complications if the disease is not managed.
“I was certainly in that group of people, and unaware that the gluten I was consuming daily in chapathis was compromising my health. The diagnosis was a wake-up call, and I was determined to do whatever I could to safeguard my health,” Sarah said.
So although her diagnosis meant going gluten-free, and the need for some drastic lifestyle changes, Sarah was ready to comply.
The most obvious shift was changing the wheat flour the family used for their daily flatbreads.
“This was a big thing, because we would easily eat chapathis for three meals a day sometimes. Made from wheat flour, they were a big part of our diet.”
The family began using rice flour and sorghum flour for their chapathis. While the switch was not particularly difficult to make, there was a definite difference in taste and flavour profile.
“Of course we could still have chapathis, but they certainly tasted different. I did find myself wanting to eat chapathis less, and opting for rice-based meals more often,” Sarah said with a laugh.
Less going out
The other big shift involved fewer mealtimes outside.
“This actually felt like a big change. As a family, we love trying out new cuisines and eateries. But it became challenging to ensure that I was eating gluten-free, so we stopped going out as often.”
Because she took the diagnosis seriously, Sarah remained committed to the changes she had to make.
“My doctor told me there was risk of cancer, infertility, hypothyroidism, malnourishment, and other issues that could crop up if I continued to eat gluten. Gluten was everywhere, in breads and baked goods and even Asian dishes made with soy sauce. But as I took a deep dive into what I could and could not eat, I realised there were a lot of naturally gluten-free dishes that I could opt for,” Sarah said.
For instance, rice-based dishes like biryani, gram flour fritters like pakoras, and even corn flour-based items like tacos are all free from gluten. Fruit and vegetable salads, without accompanying sauces, are also safe.
“I have certainly learnt a lot more about how food is prepared over the last year. Moreover, I discovered that servers and restaurant staff may not necessarily know the gluten-free items on the menu. This is why it became necessary for me to learn about food preparation, as it also opened up what I could eat when I went out.”
Her learnings helped her figure out what sauces were safe for her to eat. So while soy sauce was a no-no, the tamari used in many Japanese dishes was gluten-free and safe.
Manoj’s mother supported her in her journey, joining social media groups that shared information on diet options and eateries online. The family now has a list of outlets that cater gluten-free options.
“My mother also began eating gluten-free, and while she has not been tested for coeliac disease, she said the migraines she often experienced have reduced in frequency. The changed diet has been beneficial for her too,” Sarah said.
The teen also began to take more interest in cooking and baking as a means to stick to her diet.
Looking back, Manoj said the diagnosis curtailed her social life to a certain extent, especially as she always needed to check whether there were options available for her at various places.
“I couldn’t just get a quick bite wherever I went, and not everyone always understood this. So I simply found it easier to stay home, especially at first. Over time, I began to understand better what was safe for me, and this made it easier.”
Need for awareness
Greater community awareness and understanding is still a key requirement, and an element that will make life easier for those with coeliac disease, the 17-year-old said.
“I would urge people to learn more about coeliac disease. But more that, I would urge people to be more accommodating of people with food intolerances, whatever they may be,” Sarah added.
About coeliac disease
According to the Coeliac Disease Foundation, coeliac disease is a serious autoimmune disease that occurs in genetically predisposed people, where the ingestion of gluten leads to damage in the small intestine. It is estimated to affect one in 100 people worldwide, but only about 30 per cent are properly diagnosed.
The disease can be difficult to diagnose because it affects people differently. There are more than 200 known coeliac disease symptoms which may occur in the digestive system or other parts of the body. Some people with the disease have no symptoms at all, but still test positive on the coeliac disease blood test. Others may have a negative blood test, but have a positive intestinal biopsy.
All people with coeliac disease are at risk for long-term complications of they continue to consume gluten, a protein found in wheat and related cereals.
“The prevalence of coeliac disease worldwide is around one per cent, but it can vary from 0.5 per cent to 3 per cent. In the Middle East, including some parts of the UAE, there has been an increasing prevalence of the disease, with a ratio of 1 in 86 adults,” said Dr Mashhood PV, gastroenterology and hepatology specialist at Aster Hospital, Al Qusais.
“Some factors that increase the risk of developing the disease include having first- and second-degree relatives with the condition, or having Type 1 Diabetes, autoimmune thyroiditis, Down syndrome, and Turner syndrome,” the doctor added.
What are the symptoms?
Common symptoms of celiac disease include diarrhoea, weight loss, abdominal bloating and pain, and deficiencies in vitamins and nutrients. Other manifestations may include anaemia, weakened bones, infertility, increased liver enzymes, intensely itchy skin lesions, menstrual abnormalities, and neuropsychiatric symptoms.
“Traditionally, coeliac disease was known to present between six to 24 months after the introduction of gluten into the diet. However, it is now increasingly being diagnosed later in life, between the ages of 10 to 40 years, due to prolonged breastfeeding and delayed introduction of gluten,” Dr PV said.
In addition, the condition is more prevalent in females.
If left untreated, it can lead to severe nutritional deficiencies and an increased risk of lymphoma and gastrointestinal cancers. In children, it can cause growth retardation and neuro-behavioral abnormalities.
“The only known treatment for coeliac disease is strict avoidance of gluten. Even small amounts of gluten can trigger symptoms and cause prolonged harm. Coeliac patients need to be aware of cross-contact, where gluten-free foods come into contact with gluten-containing foods. The use of the same knife, cutting board, or toaster for both gluten-free and regular bread can result in disease flare-ups,” Dr PV warned.
“It is crucial for individuals with coeliac disease to adhere to a gluten-free diet to manage their condition effectively and prevent long-term complications. Regular follow-up with healthcare professionals and dietitians specialising in celiac disease is also essential for proper management and support.”