“Some people are eliminating gluten from their diet without getting tested for coeliac disease first. This can be dangerous, because a coeliac requires medical follow-ups and care of long-term complications. Gluten must be in the diet for an accurate diagnosis of coeliac disease,” Australian-born Candie Borg Cardona said.

Contrary to popular belief, coeliac disease is neither an allergy nor an intolerance to something. It is an auto-immune condition that is triggered off by gluten, the protein in wheat, barley and rye. The only treatment is a strict gluten-free diet for life.

A late diagnosis or repeated ingestion of gluten can lead to serious health problems, like osteoporosis, neurological problems, infertility, repeated miscarriages, anemia and vitamin deficiencies, depression, and in rare cases some types of cancer.

Ms Borg Cardona noted that over 3,000 Maltese nationals could be living with coeliac disease without being aware of it.

Recent data shows that in the UK, only 24% of coeliacs are actually diagnosed. Malta has a population of roughly 418,000. If one considers that coeliac disease affects approximately one per cent of the population, it would be expected that there would be 4,180 people with this condition. According to a newspaper article published in October 2013, there were 1,050 coeliacs eligible for free products from the government. That means that there were 1,050 diagnosed coeliacs. From these statistics, one can see that we have a similar trend in Malta as in the UK. Only one in four are actually diagnosed.

Asked why there is a low rate of diagnosis, she said the fact that coeliac disease does not only present itself with classic symptoms of weight loss, diarrhoea, bloating and stomach pain, explains why.

“Atypical symptoms include mouth ulcers, hair loss, repeated fractures, bone and joint pains and so many more. Many people with coeliac may have no symptoms at all except anaemia, and this is termed silent coeliac disease.

“Other reasons for the low rate of diagnosis,” she said, include misdiagnosis of coeliac disease as Irritable Bowel Syndrome (IBS), the fact that people remove gluten from their diets without proper testing, and poor awareness about the condition.

The current gold standard for diagnosing coeliac disease is an antibody blood test followed by confirmation by endoscopy and biopsy. Certain groups of people should be screened, including those with symptoms of coeliac disease, close family members of people diagnosed, people with Type 1 diabetes, other auto-immune diseases, anaemia of unknown cause, and IBS sufferers. If a child is not growing as fast as expected or has symptoms they may also be screened for coeliac disease.

An interesting fact highlighted by Ms Borg Cardona is that unless one carries either of the genes HLA DQ2, HLA DQ8, or parts of these genes, it is near to impossible for a person to be coeliac.

“Interestingly, 20 to 30% of the population carries one or both of these genes. However, only three per cent of the people who carry one or both genes will actually develop coeliac disease,” she said.

Genetic testing, also known as DNA testing, can be done to find out if a person is a carrier of these genes. It is performed by a blood test or buccal (inside cheek) scraping and the sample is sent to a lab to be analysed.

“Since not everybody who possesses the gene/s will go on to develop the condition, a genetic test is useful to rule out, and not confirm coeliac disease.

“In other words, if a person does not have either of these two genes, there is virtually no chance of ever developing coeliac disease in their lifetime,” Ms Borg Cardona said.

Turning to an issue which irritates her most, is that restaurants have no clue on how to deal with diners who are gluten free and this prevents her from dining out.

“Many restaurant staff are under the impression that catering to a gluten-free diet means providing gluten-free bread and pasta,” she said.

This, she said, prevents her from dining out.

“Restaurant staff do not realise that this is an auto-immune condition that can be triggered off with even just a trace of gluten.

“Even a few crumbs can make us ill. Preventing cross contamination is imperative. This includes wiping down all surfaces, constantly washing hands, using separate utensils, pots and pans and so much more,” she explained.

She added that a pizza for instance, should be baked in a separate oven to ones where pizzas with a wheat floured base are baked, but this practice is hardly given importance.

In fact, she went on to say that to avoid cross-contamination inside her home, both she and her husband do not purchase gluten based products as a precaution, despite the fact that her husband does not suffer from the condition.

On her blog and Facebook page, she said that she created a fact sheet for restaurants to follow, a guide on best practices restaurants should adopt when it comes to cooking for diners with the condition.

Asked how she came to realise that she had the condition, Ms Borg Cardona said that she started suffering from the classic symptoms associated with the condition as a child, but every time she was taken to a doctor, she either was accused of faking the symptoms to miss out on school or as having emotional problems, and instead was referred to a psychiatrist who in turn found nothing wrong with her.

The misdiagnosis was the reason why she had to struggle for several years since her condition went untreated.

“Nobody pinpointed that it was the condition that was the underlying problem.

“I continued to suffer from explosive diarrhea and stomach pains due to the misdiagnosis but learnt to live with it eventually.”

Asked if the condition is related to Irritable Bowel Syndrome, she said that it is not but many coeliacs are actually misdiagnosed with IBS. In fact it is recommended that people with IBS should get screened for coeliac disease.

“When I was a teenager all the symptoms passed miraculously, I felt better, I was alive but later in life I discovered that during one’s teens, the condition may go into remission.

“What happens is that you do not suffer the symptoms any longer but one would still be damaging his or her intestines by continuing to eat gluten-based products.

“I started to feel ill again, and by the time I was in my late 20s my hair started to fall out, my nails were breaking, I encountered recurrent fractures, and did not know what it is like not to have diarrhea anymore. I did not seek a doctor’s advice for fear that I would not be believed.

 “One fine day, I decided to get to the bottom of things and visited a doctor; I burst out crying in front of him, which was a massive mistake as he referred me to a psychiatrist.

“Later on, I got married and got even sicker as the symptoms started to worsen; this is when my husband dragged me to a consultant.

“At the time I had an uncle who was diagnosed with the disease as well.”

She said she was diagnosed very soon after she was tested. The whole process only took a few weeks.

“I was referred to undergo an endoscopy where it was discovered that I had villi, or finger-like projections in my small intestine, which were totally flat.”

Atrophy of the villi in the small intestine is the effect of the auto-immune reaction in coeliac disease. These villi are responsible for absorbing nutrients from food, and when they are flattened, it leads to malnutrition and many symptoms.

Questioned on how she felt when she was diagnosed and had to eradicate certain foods and resort to gluten free products, and how she dealt with the condition along the years,  she replied: “At first I was happy, I thought that it was just about eliminating bread and pasta.

“Suddenly I started realising that it is not as easy as one thinks to stick to this diet since gluten is found hidden in various products, including deli meats, imitation meat, chocolate, ice cream, and anything processed one can think of.”

Gluten is made up of wheat, barley and rye, but wheat is the most versatile grain in the world, and is used in so many products.

This is where it occurred to her that she could not dine out as much as she did prior to being diagnosed, or pick up a meal while out, and had to cook everything from scratch.

“At first I was feeling down, but along the years got used to the idea and I started to experiment with gluten free cooking, read several books on an appropriate diet, and made the best out of the situation,” she said.

“Now, for me, it has become a normal way of life,” Ms Borg Cardona said.

Asked if gluten free products taste as boring as they look, she said: “Seven years ago, there weren’t many products available,” she said, referring to supermarkets which only hosted a small section displaying gluten free products, “but nowadays one has more of a choice, and healthier ones at that”.

One can turn to natural gluten free foods and need not indulge in sugar and salt laden gluten free products.

“Vegetables, fruit, beans, gluten free grains, lean meat, poultry and fish, and dairy products, most of which are gluten free, are all healthier options for those with coeliac disease,” she said.

Turning to prepackaged gluten free foods, also referring to products provided for free by the State to coeliac sufferers, she said that there’s room for improvement when it comes to these products, adding that the bread is highly processed, low in fibre and high in sugars and salt. It is only edible toasted, and is often found in pieces inside the packet.

“I read something funny today: 15 years ago, sufferers did not know whether to eat the packaging of the gluten free products or the products because they tasted the same,” she said.

“I have sort of got used to the taste of gluten free products; my husband can tell the difference straight away but I cannot since I got used to the taste of rice and corn,” she said, but emphasised that there are so many better options out there nowadays. Foods made with gluten free wholegrains, that are lower in unhealthy additives and sugars, and that are fortified with iron and other nutrients.

On the government coeliac scheme, she said that there is massive room for improvement.

“Most of the products are not in line with health promotion standards. The government is giving out free products to a population of people to encourage them to stick to this expensive and highly complex diet to prevent long term health complications and further health care costs to the government. It does not make sense that these products given in turn promote an unhealthy lifestyle’.

“A good number of people with coeliac disease suffer from diabetes 1 and this group of people should ideally have a diet rich in wholegrains, not highly processed, sugar laden foods.

When asked what type of food she misses most, she said: “Kentucky fried”.

Her advice: “This group of people should ideally have a diet rich in wholegrain, not highly processed, sugar laden foods.”