What it means to live with celiac disease

"It’s not that bad. Let me explain."


By Raghda Al Hinai

Celiac disease..sounds scary right? But it’s not that bad. Let me explain.

It all started when I was in London completing my studies at university.  One morning, I decided to go out for breakfast with my friends. The breakfast was very bread-heavy. After returning home, I experienced immense abdominal pain that made me sweat and get brain fog. I was so confused because it was unlike any abdominal pain I had ever experienced before. At the time, I did not understand what celiac disease or gluten was. Thus, the mysterious pain kept reoccurring over the next months, coupled with weight loss, fatigue and bloating.

Thankfully I was only in London for a short while after my condition started, and I managed to travel back home to Oman for the summer before my condition worsened. I was always bloated, I kept losing more weight and I became terrified of food because I noticed my symptoms showed up after meals, but I did not know exactly what was causing them. I made several visits to the doctor, but it seems that there was a lack of awareness regarding autoimmunity. My medical records showed that I had tested negative for celiac disease when I was a child, so the doctors did not feel the need to test for it again, not recognizing that the disease can, in fact, develop at any point in your life.

“I became terrified of food”

My last visit was with my diabetes specialist, who was the one who managed to diagnose me. I went in to discuss my sudden low blood sugar levels (celiac disease does not allow nutrients to be properly absorbed by your body, which I did not understand at the time because I would have a big slice of cake and still have low blood sugar levels) and explained the stomach issues I was having, and she immediately suggested that I retake the celiac test. Finally, after six months of hospital visits, I got my diagnosis. Truly, she is my hero.

My doctor told me that celiac (coeliac) disease is one of the many autoimmune diseases out there that specifically attacks the intestines and does not allow them to absorb the nutrients from food correctly, hence the pain. It seems I am prone to autoimmune diseases because when I was 6 years old, I was diagnosed with type 1 diabetes, an autoimmune disease that attacks the pancreas and affects its ability to produce insulin.

The journey ahead was tough (as I would later find out).  I thought that dealing with diabetes was too challenging, but with the latest technologies and insulin, it is way less restrictive in comparison to celiac disease.  But in the moment I got diagnosed, I felt nothing but relief. Being restricted from gluten was far better than suffering and not knowing why. With the support of my family and a lot of research, however, I learnt that my new reality was not as bad as I had thought it would be. I found restaurants that I was able to eat in, as well gluten-free bread, pastas and snacks from grocery stores that I could safely consume, and thankfully, the list of options are constantly expanding. I do have hiccups here and there when I take big risks and eat out sometimes as even though many restaurants say some of their food is gluten-free, how safe is it really?

“I thought that dealing with diabetes was too challenging, but with the latest technologies and insulin, it is way less restrictive in comparison to celiac disease.” 

Hearing things like “It’s just one bite”, “Don’t you think you’re being dramatic?” and “I think you’re exaggerating” was very common at first. It used to upset me because why would I choose to restrict myself if I did not have to? But then I told myself not to take people’s lack of knowledge about the effects of the disease personally. I mean, a short time before, I had no idea what celiac disease was either.  So, I explained to them that celiac disease relates to antibodies, and just like how one virus cell triggers anti-bodies, one crumb of gluten does the same to me. That is why surfaces need to be cleaned before my gluten-free food is cooked, and that they should not be offended when I decline trying out their new dish. Now, everyone I know is a lot more understanding.

In order to get more support, I wanted to join a community of people who were also going through what I was going through, so I created a an instagram account that focuses on creating and sharing gluten-free related content (@coeliacjournal). Through instagram, I found many Omanis who post their gluten-free finds and I have learnt so much from them. Later, I participated in this myself by posting my recipes and experiences through a website I created and called “Coeliac Journal.”

All in all, I always tell myself that everything happens for a reason, and maybe my reason is because I have the ability to spread more awareness about celiac disease amongst others giving the tools I have and my marketing background. With a great support system, things like this are easier to handle and manage. It has been three years since my diagnosis, and each year I get more gluten-free birthday cakes than the year before. How could I complain?

Raghda Al Hinai is a 24-year-old Omani who was diagnosed with type 1 diabetes at the age of 6 and celiac disease at the age of 21. Her marketing experience has allowed her to spread awareness about her condition. She blogs and shares gluten-free recipes on www.coeliacjournal.com, and finds others to learn and benefit from.

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