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Creating Celiac Disease Awareness in Africa

Celiac.com 06/17/2009 - He stands aloof and watches absent-mindedly as the other children queue up for the food. He remembers his mother’s stern warning and the hunger pangs worsen. He knows the even a morsel of the delicious mouth-watering cake will surely make him ill. Meet Mike, he was born with celiac disease.

Mike’s parents are well-off and highly educated. According to his mother, Mrs. Kintu, shortly after his birth Mike started showing signs and his parents immediately took him to a European hospital for a check-up.  The doctors did an endoscopic exam and Mike was diagnosed with celiac disease. Mike had to stick to a gluten free diet for the rest of his life. Mike’s life was spared.

Had Mike been born in a poor family, Mike would have eventually lost his life to celiac disease, just like the increasingly shocking numbers of African infants between the very minor age of 6 months and 4 years that die every year—particularly in the East-African region. The acute lack of awareness and subtle ignorance about the disease leads the devastated parents to think that sorcery or envious neighbors robbed them of their little ones.

Mike is alive today and maintains a particularly sparse diet and survives on such food as vegetables, rice, beans, potatoes, small quantities of red meat, and fresh fruits. Granted, this may seem like a rather healthy and outright fulfilling diet for an adult, however, as fate would have it, Mike is also lactose-intolerant. Essentially, this means that, in lay-man’s language, Mike is allergic to milk in its natural form and all its by-products.

Celiac disease is a permanent inflammatory disease of the small intestine triggered by the ingestion of gluten-containing cereals in genetically predisposed individuals. It is a lifelong autoimmune intestinal disorder. Damage to the mucosal surface of the small intestine is caused by an immunologically toxic reaction to the ingestion of gluten and interferes with the absorption of nutrients. Celiac disease is unique in that a specific food component, gluten, has been identified as the trigger. Gluten is the common name for the offending proteins in specific cereal grains that are harmful to persons with celiac disease. These proteins are found in all forms of wheat (including durum, semolina, spelt, kamut, einkorn, and faro), and related grains such as rye and barley must also be eliminated.

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Celiac disease was first described in the second century AD by Aretaeus of Cappadocia, a contemporary of the Roman physician Galen, who used the Greek word “koeliakos”, which means “suffering of the bowels”. However, only in 1888 AD did Samuel Gee of St. Bartholomew’s Hospital give the classical clinical description of celiac disease.

The cause of celiac disease, also known as celiac sprue, or gluten sensitive enteropathy (GSE), is unknown. Celiac disease occurs in 5-15% of the offspring and siblings of a person with celiac disease. In 70% of identical twin pairs, both twins have the disease. It is strongly suggested that family members be tested, even if asymptomatic. Family members who have an autoimmune disease are at a 25% increased risk of having celiac disease.

Celiac disease displays itself with the following symptoms:

  • Recurring bloating, gas, or abdominal pain
  • Chronic diarrhea or constipation or both
  • Bone or joint pain
  • Behavior changes/depression/irritability
  • Vitamin K Deficiency
  • Fatigue, weakness or lack of energy
  • Delayed growth or onset of puberty
  • Failure to thrive (in infants)
  • Missed menstrual periods
  • Infertility in male & female
  • Spontaneous miscarriages
  • Canker sores inside the mouth
  • Tooth discoloration or loss of enamel
And many others (to see a complete list go to the Celiac Disease Symptoms page).

In any case, there is little or no research on this disease in East Africa. The principal ideals behind this article are the commencement of an awareness program, with particular emphasis on celiac disease and any other diseases that are not generally known about in the region. It is important that these are brought to the light and addressed duly by the concerned parties. There is also an urgent need to formally address the problem especially to those that can not possibly afford treatment and are generally ignorant. I am in the process of establishing an awareness campaign concurrently with a patients’ association for celiac disease in East Africa. The association is still in its infant stages and I am appealing for support and any form of assistance.  The name of my association is: Creating Celiac Disease Awareness in Africa.

Author's Note: The names of the characters in this article have been changed for privacy reasons.

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3 Responses:

 
Laura
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
01 Jul 2009 4:03:59 PM PDT
Hi,

I am very surprised and excited to see this article! I have Celiac Disease and have for a while now, but still decided to spend 4 months studying abroad in Tanzania. I just returned from my trip about a month ago. It was very hard for me to explain to people there, even fellow students at the University of Dar es Salaam where I was studying, about celiac disease and a gluten-free diet. My family always asked me, 'well what happens to the people there that have deliac disease?' It is hard to realize that people in Tanzania could be sick from celiac disease, and even die in some circumstances, without ever even knowing that there is a simple treatment. This is so unsettling to think of, and this is why I wanted to email you and let you know how much I appreciate and support your new organization.
I tried to find out more on the web, with no luck. If you have any more information about your organization and how you are planning on raising awareness, please let me know. I am very interested! This seems like a wonderful and necessary thing to do.

Thanks,
Laura J

 
Nira
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
07 Dec 2009 12:41:48 AM PDT
Hi Lionel,

I am a medical student in San Francisco and a celiac, diagnosed 5 years ago. I am interested in starting a non-profit to raise awareness about celiac disease in Africa.

 
Thandi
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
22 Jan 2010 4:17:40 AM PDT
I'm a South African trying to get my suspected celiac confirmed but trying to find a lab that even understand what I'm asking for is like looking for a needle in a haystack. Good luck with your work.




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