Coeliac disease-A story of perseverance, fortitude and wisdom

Never Lose Faith?

The car weaved silently through the town. When it reached the destination, it waited momentarily while security guards swung open black iron gates, and then it parked in front of a traditional Argentinian courtyard house, which was made up of five main levels with a tranquil courtyard between the house and the clinic.

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?Myrian spent a delightful 5 minutes looking at the breathtaking park before being called by her doctor. She was in her mid 40s, and for the first time in 40 years she felt she was going to start a new life. It is strange how things always look brighter when we have hope, she thought, before starting to detail her story again.

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?"It started when I was at school. Children had to have breakfast before going to school and I followed this rule. It usually consisted of a coffee with milk, bread and jam, which for a capricious reason my gradually slimming body did not tolerate. Breakfasts were always followed by bouts of vomiting. My paediatrician did not explain why I was extremely slim and experiencing painful abdominal distension and constipation; however, he treated my recurrent low iron anaemias and low folate levels. Skipping breakfast at home and eating chipa (a roll made with tapioca flour instead of wheat) at school helped. Although I noticed the vomiting had stopped, I was still experiencing constipation and abdominal pain even if I only drank coffee and milk. I have always had the feeling that it was related to something I had been eating but I was told that it was all in my head and that I was the one who was causing all the symptoms."

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?Myrian continued: "During my childhood and adolescence I was very slim, but I have always had a large painful belly. A gastroenterologist gave me treatment for gastric ulcers without success; another said it was IBS, and yet another one told me in front of my mother that I had had anal sex and it caused my symptoms (I was 17 and I had never had sex). During the following years, I saw several specialists for the gastrointestinal symptoms (which kept me hours in the bathroom doubled over in pain), extremely painful headaches, epilepsy-like episodes, myoclonus (sudden, brief post-prandial involuntary muscle contraction) and depression. Many of them treated me with a wide range of medications for years but all my symptoms persisted. I was feeling weaker and lonely as it seemed everyone had given up. Some doctors said it was stress or hypochondria and others, the more "courageous” ones, experimented with different drugs. I was also hospitalised several times. Nothing worked".

Calmly, the doctor said: I have looked at all the studies and treatments you have undergone throughout all these years. Can I ask you why you did an endoscopy and biopsy 2 weeks ago??Myrian responded: "I am not a doctor, and I could have been wrong, but some doctors could also have believed that other’s interpretations were more valid than their own and consequently committed or overlooked a mistake. They could have been influenced by time constraints or by fear of appearing deviant from the majority opinion or simply by the medical views of those perceived as experts."

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How did you feel before the endoscopy? "I was frightened, but I was also the only one who was sure that what being called stress by those who did not have an answer was in fact linked to something I was eating and it was hurting my gut. I felt my true self had remained hidden all those years, trapped behind the barriers thrown up by this illness. I wanted to be free."

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After a two-hour consultation, this doctor who specialised in coeliac disease confirmed what the biopsy said: coeliac disease. After almost 40 years he was the first doctor who gave her two hours, confirmed a diagnosis, and gave her detailed information about her condition and taught her what she could eat from now on.

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In a few months, Myrian was able to have the life which many of us have without realising how fortunate we are. Now, there were no more sleepless nights, no more pain, no more bloating, no more humiliations and there was more time to enjoy life. Over the following months Myrian organised medical conferences in her hometown, the aim of which was for coeliac disease specialists to provide other doctors with the skills needed to prevent such a long-term suffering in patients.

This story has been written with Myrian's consent (no real name)

Find more about key clinical information and genetic studies at this link

By Dr Maria Zalazar