Coeliac disease: A lifelong struggle

It’s easy to take for granted simple activities like going out for a pizza or for a refreshing beer, but for some that option isn’t on: for those with coeliac disease, a trip to a restaurant is much more complicated, for they have to check whether the place makes gluten-free dishes, or opt for dishes that are free of the pervading substance.

Gluten is explained as a protein composite found in wheat and related grains, including barley and rye.

Some sufferers live their entire lives with the disease, others develop it at a later stage in life. One thing is certain: living with coeliac disease is a challenging struggle.

Sofia Allen, 5 is the daughter of Daniela and Piers Allen, two parents who recently gave a series of talks to raise awareness about Coeliac Disease – Sophia has lived with the disease practically all her life. 

“When Sophia was just over two she was admitted to hospital suffering from pneumonia. While in hospital a series of routine blood tests were taken and while the results were all within the norm, one of them, her haemoglobin, was not,” Daniela told me, explaining that the couple were then asked to monitor what their daughter was eating and ensure that she ate more red meat.

“Time passed and during the year and a half that followed we kept a close eye on her. She went through endless bouts of what we believed was gastric flu, skin rashes, uneven skin tones on her face, chest infections and a general sense of irritability.”

The couple had another child on the way at the time and they hoped that what Sophia was going through was just a phase, but they started noticing changes in their daughter around a year later.

“Sophia would fall asleep at table just after having lunch, she also started to look very pale while developing dark skin patches around her face and legs. We were extremely worried, but when it was time to repeat her blood tests again, the same results emerged,” she explained. 

Despite doctors’ insistence that she continue to increase her daughter’s red meat intake, Daniela understood that it might have been something else and she insisted on further tests.

“She was referred to Professor Thomas Attard, a paediatric gastroenterologist and president of the Maltese Paediatric Association, who took immediate steps to test her for what could possibly be the cause of her ill health.”

Contacted by MaltaToday, Professor Attard explained that coeliac disease is one of a series of gluten-related disorders which include non-coeliac gluten sensitivity, wheat allergies and wheat intolerances among others. He added that the auto-immune disease presents various symptoms such as diarrohea, abdominal pain and constipation as well as stunted growth in children. If left untreated, coeliac disease could lead to much worse complications like anaemia, infertility in women, hepatitis and even loss of hair and dental erosions among others. 

“Sophia was so unwell by the time we approached the professor. On the day of the appointment she was curled up in her lightweight stroller, hardly able to talk, my heart aching – all she wanted to do was sleep,” Daniela said, adding that Prof. Attard’s initial suspicions had ultimately been proven correct when Sophia was admitted to hospital for an emergency biopsy of the stomach and a colonoscopy, with the results being highly positive to coeliac.

Attard also stressed the importance of an early diagnosis, particularly in cases where there was a family history of the disease.

“Some people don’t even have initial symptoms of coeliac disease, but the disease would be spreading anyway,” he said reiterating the importance of testing for those who have a family history.

“Genetics are thought to play a very strong role in the transmission of the disease,” Attard said. “Those with first degree relatives who have the disease have a 10% risk of contracting the disease themselves even if they don’t develop any symptoms.”

Daniela Allen explained that her daughter’s diagnosis came just a few days before her fourth birthday, “in fact, we were planning her birthday party while still at Mater Dei – it kept her busy and gave her something to look forward to,” she said.

“The school she was attending at the time was also marvellous and prepared a huge get well soon card for her to enjoy while she was in hospital,” Daniela said, recalling the particularly tough days. 

“Luckily however, we were told that once we eliminated gluten from her diet she would recover and live a normal life again – if we did not, the consequences would be serious and could even lead to cancer in her small intestine.”

Daniela added that adapting to the new reality took quite a while and that she was plagued with concerns about how she would cope, how she would inform all those around her and whether her daughter would feel excluded in activities involving food. 

“Almost two years later and Sophia is in optimum health, she has learned to give up the food she so loved before and has adapted to the necessary changes. It took us and all her extended family a lot of learning – we started this journey together and have been on it ever since, and although it is not easy, we manage quite well.”

Daniela explained that it is hard to sometimes ensure that her daughter doesn’t feel she has to ‘miss out’ on anything that her friends are doing. 

“The thing that upsets Sophia most is probably not being able to eat any of her friends’ birthday cake (unless of course they are gluten free),” she said, adding that she had eliminated gluten from her own diet as a sign of respect towards her daughter.

“In this way I can understand exactly what she is going through and ensure that she feels secure knowing I’m on the journey with her,” she said. 

Prof. Attard also commented on the importance of those who have coeliac disease leading a gluten free life, since once someone is diagnosed, they can never re-develop a tolerance to gluten. 

“Avoiding gluten is the only known way to avoid the symptoms. Although research is on-going to try and find vaccines that can re-build tolerance, so far, none of them has been confirmed as truly effective,” Attard said.  

Daniela added that the change was by far not the end of the world. “I immediately joined the local association that represents coeliacs, who were very helpful and gave me a lot of information, including very good gluten free recipes. I also started following informative independent coeliac Facebook pages and the first ever Maltese blog/website on the subject which was set up by a coeliac sufferer herself.”

Daniela pointed out that the largest part of the struggle about coeliac disease is the ongoing need for awareness. Having recognised the need for more awareness the Allens decided to help raise the profile of coeliac awareness in Malta through their company Narrative Structures (PR Firm) and they invited a world expert on Coeliac Disease and Gluten intolerance to Malta, Prof. Stefano Guandalini who delivered two talks last week (one for doctors and another for the public). The events were organised with the support of many, including the President’s Foundation for the Wellbeing of Society and the Italian Cultural Institute.

“We believe there has to be a national approach and social consciousness about conditions such as these. Coeliac disease is not an allergy as many people often think, it’s a chronic illness and an autoimmune condition that needs to be taken seriously. Education is key,” Daniela said.

She added that Sophia had participated in the preparation of these two talks by Prof. Guandalini and that she was eager to get the message across as she understands what it means to need help and support. 

“Together with her other two younger siblings she already helps people understand what it means to live a gluten free life.”

“We are not alone in this battle, throughout this journey we have met many wonderful people; coeliacs themselves, doctors and parents to coeliac children. We all share the same anguish and frustrations and we are all striving to make this world a better place. Through this venture my family and I are confident that indeed we did make a difference, not for ourselves but for the benefit of society at large,” she explained.

Daniela spared a final comment to stress the importance of shifting the focus onto inclusion and not allowing situations such as these to create social barriers.  

The need for awareness becomes increasingly clear in view of the fact that one percent of the global population is believed to have coeliac disease. Attard explained that in Malta alone, some 1,400 people were receiving benefits for gluten intolerance, but actual numbers were expected to be higher. 

“Having to buy gluten free products is very costly, and although the monthly €30 vouchers are helpful, a lot more needs to be done for those suffering from the disease,” Attard said. 

Asked whether the disease was attributed to anything other than genetics, Attard explained that some studies suggested localities as a possible explanation, with people from Far Eastern countries especially having very few incidences of the disease, but this could be attributed to their starch-based diet.