College-aged Rwiada has been suffering from regular abdominal disorders for over ten years. While tests performed at the Children’s Hospital in Benghazi were inconclusive, analyses sent to Britain revealed she was diagnosed with celiac disease—an oversensitivity to gluten found in wheat, barley, oats and some other foods, especially starchy ones. Rwiada was then put on a strict gluten-free diet.

But gluten-free flour is scarce in Tobruk, in far eastern Libya, where Rwiada lives, and it is also expensive.  

College-aged Rwiada has been suffering from regular abdominal disorders for over ten years. While tests performed at the Children’s Hospital in Benghazi were inconclusive, analyses sent to Britain revealed she was diagnosed with celiac disease—an oversensitivity to gluten found in wheat, barley, oats and some other foods, especially starchy ones. Rwiada was then put on a strict gluten-free diet.

But gluten-free flour is scarce in Tobruk, in far eastern Libya, where Rwiada lives, and it is also expensive.  

Insufficient quotas

According to Social Solidarity Fund statistics, there are nearly 100 people suffering from celiac disease in Tobruk aged between 6 months and 55 years; all of whom have difficulties obtaining gluten-free food.

Idris Khalid, father of nine-year-old Hanan said, “The only place that formally offers gluten-free food is the Children’s Hospital in Benghazi (500 kilometers west of Tobruk), which only offers flour and pasta at wide intervals and in very small quantities.”

Khalid added, “It’s difficult to get flour and sometimes we are forced to buy it from special stores at high prices of up to 8.5 Libyan dinars ($ US 6) per kilogram, if it is even available in the first place.”

Medical opinion

Pediatrician and Head of Tobruk Medical Center Dr. Saeed Hamad said the disease is chronic and starts at birth, but its symptoms begin after six months, when children begin eating foods that contain gluten, such as children’s biscuits. The first symptom is bloating and diarrhea causing salt shortages and consequent anemia.

Hammad explained that diagnosis in the first stage is processed through a blood test or intestinal biopsies.

“The disease is caused due to a vanishing of capillaries in the small intestinal wall, which is responsible for digestion and makes gluten digestion impossible. There is no cure until now,” he added.

Despite the absence of official statistics on the number of infected in Tobruk, Hammad believes that there is no need to open a special section in the Medical Center for their treatment.

“Their numbers are not big and they get assistance from the Children’s Hospital in Benghazi. There is an NGO in Tobruk that provides them with proper aid,” he said.

However, Hanin Association, which started its activity on December 24, 2011, lost its temporary headquarters and without support they had to shut them down only four months after launching.

“We had a contract with a laboratory and were in the process of signing a contract with a physician to oversee the patients without the need to travel to Benghazi,” Siham Mohammed, Chairman of the Board said.

But, initiatives of Siham, who also suffers from this disease, were not realized due to lack of cooperation of the local council, the health sector and Tobruk Medical Center. This forced her and her husband, who assisted in the management of the Society, to transfer important documents and files to their house while waiting to obtain a headquarters and financing.

Unhealthy peer pressure

The Libyan government classified children with gluten sensitivity as people with special needs and disbursed monthly aid of 90 Libyan dinars (US $ 70) through the Social Solidarity Fund. The amount increased a few months ago following the government’s decision to increase the salaries of the public sector to 225 Libyan dinars, (US $176).

However, due to travel costs between Tobruk and Benghazi and the lack of gluten-free products, bakeries or restaurants, patients’ families consider this financial aid insufficient and find it difficult to prevent their children from eating normal bread, sweets and chocolate outside their home.

“I see her eating chocolate and some banned substances from the school’s cafeteria with her classmates,” Hanan’s teacher confirmed.

Her mother fears psychological repercussions that may be caused by distinction between her and her siblings. “I offer her gluten-free pasta with her siblings to encourage her to eat since she only eats with her siblings and refuses to take special foods alone,” the mother said.

At the state level

The Children’s Hospital in Benghazi and its stores are only open for two hours, five days a week, where only limited quantities and types of pasta are available.

On a recent visit, there was no flour in the stores. Some patients’ parents, such as Hanan’s father, Idris Khaled, accused the stores’ staff of trading with the flours especially that the same Italian-made quality is sold in some stores at high prices. The stores’ staff denied this accusation.

Dr. Fatima Burzizeh, the head of nutrition at the hospital said, “It is impossible, since the hospital has no flour to be sold and the last time we got flour, it was already one-month before the expiration date, which prompted us to distribute it to patients in large quantities to dispose it before it expired.”

Burzizeh explained that the Ministry of Health only provided these products infrequently and in very limited quantities and that all correspondence between the hospital’s administration and official bodies such as the Ministry of Health and the Ministry of Economy were merely reports and statistics on cases, submitted by the administration without getting any support.

“The hospital is responsible for all cases of the eastern region and has more than 1500 cases and the number continues to increase. We were recently forced to follow up cases from the city of Sirte, hundreds kilometers to the west. Our main supporter after the revolution is the Libyan Association for Humanitarian Relief,” she said.

Anonymous supplier

The owner of one of these stores refused to disclose his supplier. He only said he gets it from a supplier in Tripoli, who imports it directly from Italy. He did however emphasize that it is a rare product imported at high prices, which forced him to sell it at such prices.

 “We offer a service to our customers who suffer gluten sensitivity and do not aim at profit since our profit is too small.” However, Hanan’s father and a number of patients’ parents asserted that the product sold in the store is the same as that supplied by the Ministry of Health Children’s Hospital, accusing the hospital officials of trading with it.