Zisanda Nkonkobe
The most common symptoms include mental fatigue (“brain fog”), fatigue, gas, bloating, abdominal pain, headaches, joint pain and maybe depression.
Sinesipho Bam, who suffers from NCGS, said her symptoms began in childhood. She lived daily with stomach cramps, vomiting, diarrhoea, constipation, bloating, nose bleeds and aching and swollen fingers until the day she cut gluten from her diet. Constant misdiagnoses included appendicitis and arthritis, which she was told she had at the age of 11.
Her symptoms persisted until she started looking for a solution on the internet.
“I was just tired. I was tired of the constant pain, the constant fatigue and the nose bleeds. The bloating was so bad my entire stomach would inflate as if there was something inside it. I was always either constipated or had diarrhoea and my fingers were always painful, swollen and itchy,” she said.
“I started researching on the internet and based on the symptoms I thought I might be lactose intolerant so I immediately stopped eating all dairy. But even without dairy I was still feeling awful. I got back onto the internet and came across an article on celiac disease. The symptoms sounded exactly like mine so I cut gluten as a test.”
The year was 2009 and Bam was a student at Walter Sisulu University. While all her friends cooked and ate together as a group, Bam ate in isolation as she tried to remove all gluten from her diet. For the first time in her life, her symptoms improved. “But they didn’t go away completely. I was still battling with stomach issues and nose bleeds and I was always tired.
“In 2012 I decided to go and see a gastroenterologist in Johannesburg. Because I had already been off gluten for a while he couldn’t diagnose celiac disease but he diagnosed NCGS,” she said, explaining that the test for celiac disease involved a body’s response to gluten. “After that I educated myself on gluten sensitivity and realised that even spices contain traces of wheat. I also learned that [some] alcohol is distilled from grain, which explained why even a little bit would make me ill for up to a week.
“Now I only eat food seasoned with fresh herbs and salt and I drink no alcohol. I try not to eat out because not a lot of restaurants cater for people like me. I can’t even buy lunch at the work canteen.
“Every day I get up early to prepare lunch. But I’m completely gluten free and I feel good for the first time in years,” she said.
East London-based Dr Daya Appavoo said although both celiac disease and NCGS presented with abdominal pain, gas and bloating, one couldn’t leap to a conclusion as these symptoms occur in a host of other conditions as well.
Appavoo said he had seen a number of patients with similar symptoms. He either referred them to a dietician for a gluten-free diet or to a gastroenterologist for difficult to diagnose cases.
“Some cases are clear that it’s a gluten intolerance but other cases are a bit more complicated and that’s why I always refer to a specialist. There are none in East London but two in Port Elizabeth so that is where I send my patients,” he said.
Ria Catsicas, a spokeswoman for the Association for Dietetics in South Africa, said one test was a blood test for antibodies. Another is an endoscopy – a minimally invasive procedure using a long, thin, flexible tube with a light and a video camera to examine the interior surfaces of the gut.
During the procedure, biopsies (samples) of the bowel wall are taken for microscopic examination.
Catsicas warned people not to confuse indigestion with gluten intolerance.
“We often hear people saying that they are gluten intolerant when they experience indigestion, a bloated feeling or constipation. While it is very important to diagnose the condition in those who have it, diagnosis cannot be taken lightly. Following a lifelong gluten-free diet is expensive and restrictive and needs full adherence for the healing to take place and for maintenance of bowel health. If you have any of the symptoms, do not self-diagnose,” she said.
“Treatment requires removal of all gluten and related protein fractions from your diet. Consult a registered dietician, who can help you create a gluten-free eating plan that will meet your requirements for energy as well as for all macro- and micronutrients. The dietician can also assist with sample menus and a shopping list to assist with this major lifestyle adjustment.
“It is advisable that during the first few weeks you should take a vitamin and mineral supplement to replenish nutrient stores that were lost before you started the gluten-free way of life. It is also important to remember that fluid and electrolyte replacement is essential with severe diarrhoea.”
Bam said her gluten-free diet was made more difficult by negative attitudes from people.
She said: “I’ve had some people telling me that there is no such thing. Other people said this is a white people’s illness and black people don’t suffer from such things. I have been attacked by some people on social networks because of my posts about the troubles of finding gluten-free food, both at restaurants and in grocery stores.
“It’s even harder when I have to attend a traditional ceremony. I can’t eat any of the food prepared there so I normally bring my own food, which people often find strange.
“When it’s a family thing it gets easier because my mother either makes food for me on the side or saves me food that she knows is safe for me to eat.
“When I go out with my friends I normally sip on water. I went to a restaurant last week and I phoned in advance to ask them to make a green salad specially for me with no spices or sauces.
“They made it perfectly to my specifications, which was wonderful, but it’s not always the case.
“Gluten-free food is not cheap, but because I only have to sustain myself it’s fairly easy to maintain right now.” —