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Celiac Disease in Africa?

Let me introduce myself. My name is Lionel Mugema. I was born in a small hospital in Kigali, Rwanda in the month of June in 1981. My mother tells me mine was a C-section birth and she wanted to name me Caesar.

I was diagnosed with celiac disease in Brussels, Belgium when I was about 6 years.

My
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family ensured that all my meals were gluten-free. However, now that I am all grown up it has changed. There exists no gluten-free food here in East Africa. The little that comes from South Africa is unusually expensive. Worse, my doctors do not believe an African can get celiac disease!

What do you think?

As always, Celiac.com welcomes your comments (see below).


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16 Responses:

 
Albert

said this on
15 May 2009 6:29:24 PM PDT
Lionel
My name is Albert. I am living in Canada where there is a variety of restaurants that have a gluten free menu. However, I do not dine out too often in restaurants, unless I am out of my home.
Your claim about lack of gluten free products is a false statement, unless you are looking for ready to serve, or half-processed food.
So, you have to make your own meal from basics, or have to suffer. I do not eat bread at all. I eat lots of vegetables, meat, fruits, beans and all tasty goodies that you can buy in any country, even in Africa. Yes, it is extra work, but that is the way of life you have to live, or suffer.
Best wishes to you!

 
Lionel

said this on
05 Nov 2014 11:42:09 PM PDT
Dear Albert,

Thank you for your reply.
I apologize this has come back many years later. Struggles of life.
I understand your statement. What I meant is that sometimes I have to travel and it is so hard or very expensive to get snacks on the go.
True. I make my own meals. I have protein and lactose intolerance too. I eat lots of fruits and vegetables.
Thanks a lot.

 
cevenol

said this on
16 May 2009 1:09:33 PM PDT
Hi,
yes, according the current knowledge, the HLA genetic make up of pure African people/black does not predispose people to celiac disease. The question is have you performed a blood test looking for anti TG antibody? if yes, what is the result positive, negative? if yes, you should have an endoscopic exam to look at the villi of your small bowel!
Please clarify.

 
Lionel

said this on
05 Nov 2014 11:44:07 PM PDT
I Hi Cevenol,

All my tests were done in Brussels when I was young. I have not done any new tests since then.
Perhaps I will.

 
said this on
17 May 2009 10:38:49 AM PDT
Dear Lionel.
My name is Sonia and I have a granddaughter of celiac six years, we are Spanish.
I travel frequently to East Africa and I have often wondered what happens to the celiac patients in Africa?
He speaks with some African doctors know little about the disease, others nothing.
Maybe we should start by seeking doctors interested in celiac disease (!)
As for the price of food is very expensive anywhere in the world, it is necessary to lower prices.
Lionel, celiac disease is still spreading, with only diffusion and claim that we can achieve what the patient needs to celiac. I am at your disposal Lionel.

 
Lionel

said this on
05 Nov 2014 11:45:45 PM PDT
Hi Sonia,

Indeed we should start seeking medical doctors interested in Celiac Disease.
Thank you again.

 
Cara McKelvey

said this on
18 May 2009 5:56:03 AM PDT
Wow, Lionel, that must be so hard! There must be some other Africans who have celiac disease. You should change your doctor if you can because unfortunately there are many bad doctors who know little about celiac disease. Good luck!!!

 
Lionel

said this on
05 Nov 2014 11:47:30 PM PDT
Dear Cara,

I tried changing doctors and something strange happened. The new one advised me to eat gluten (read bread and biscuits) and see what happens.
Thanks

 
Aliza Pain

said this on
18 May 2009 9:22:49 AM PDT
Hi-
I think that's very odd that your doctors believe you can't get celiac disease. My aunt lives in London and was dying a few years ago from a mysterious illness. No one could figure out what was wrong until her friend, a traveling doctor who had just returned from Africa, immediately diagnosed her with celiac and she immediately felt better.
But, I'm not sure why you there isn't gluten free food available. You know rice, meat, vegetable, fruit, milk, nuts are all gluten free. Many meals have to be made using fresh, frozen or canned ingredients with out sauces or additives, but it can be done. I don't buy many 'gluten free' products because they are way to expensive, I live in Indiana, in the United States, and I can make many delicious meals with out using any gluten. I can send you some recipes if you'd like. I would love to help you figure this out too! I hope to hear from you!

 
Lionel

said this on
05 Nov 2014 11:49:39 PM PDT
Hello Aliza,
Glad to hear that your aunt is in much better health.
You are absolutely right.
my email address is mugelib@yahoo.co.uk

 
Eesha

said this on
18 Jul 2010 10:55:13 PM PDT
Hi Lionel,

My name is Eesha and I live in the U.S. When I was diagnosed with celiac disease, the availability of gluten-free products was similar to your current situation. I completely understand the struggles you are going through! I am also very interested in increasing the awareness of celiac disease worldwide. Could you email me more information about the organization you're trying to start? I would love to hear more!

Thanks!

 
Lionel

said this on
05 Nov 2014 11:51:24 PM PDT
Hi Eesha,

Please send me your email address so that we can start this conversation.
I apologize for the delay in replying you. The dream is not dead.

 
Cherry Stoltz

said this on
15 Sep 2010 1:34:44 PM PDT
Hi Lionel. I live in South Africa and have just been diagnosed with coeliac disease. It is horrifically expensive buying, and baking with, gluten-free products here too. To make 2 small loaves of gluten free white bread costs me more than R80!!!! We have decided to buy an R850 Kenwood attachment to mill flour because it will pay for itself in a very short time. I don't know how we are going to manage because we are pensioners without a monthly pension... I need to find a company who can supply me with the raw grain and hope that costs less.

I feel really sorry for anyone in Africa with this disease. The high cost of GF foods means one can seldom eat carbohydrates, so we'll have another health problem on our hands. I try cheating and eating wheat products but suffer so much pain shortly afterwards that it isn't worth it!

I'm determined to find a solution - for myself and other coeliac sufferers in Africa.

 
Lionel

said this on
05 Nov 2014 11:54:24 PM PDT
Hi Cherry,

Thank you for your reply.

I exactly understand you. I have cheated the diet too but the pain after is a good reminder not to try it again.
We need to get a cheaper of getting supplies to Africa. Then we can start baking.

 
Sarah

said this on
30 Sep 2010 8:18:30 AM PDT
Dear Lionel,

It seems to me that many Africans living on a traditional diet will not have much exposure to wheat gluten. Millet does not contain gluten, and neither does sorghum or maize or rice, similarly cassava. These have been generally in higher supply in most African countries than wheat - and it maybe worth exploring whether the growth in wheat based, western style bread and bakery products will have an adverse effect on the prevalence of coeliac disease in Africa in the future. For yourself, I would turn to these alternative carbohydrate sources to avoid the expensive (even in this country - UK - only children get free prescription foods) modified wheat alternatives. I would be interested to hear of any research on this subject.

 
Lionel

said this on
05 Nov 2014 11:57:02 PM PDT
Dear Sarah,

You must know that the millers of sorghum, millet also do mill wheat and they use the same milling machine. Cross contamination is unavoidable.
Yes, any new research on this is very welcome.




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