Thursday, August 4, 2011

Suffer the children

[Trigger Warning: child starvation, suffering, and death]

Most of us have seen the picture--children crowded around the back of a relief truck as aid workers spoon out gruel into cups, bowls and outstretched hands. Today I read something that made me realize that if I had been ever been one of those children it would be unlikely that I would have lived to write this blog. If my father had been one of the starving people in the refugee camp he would probably not have survived.

Celiac/coeliac (both spellings are common) disease is, to quote the article The Global Burden of Childhood Coeliac Disease: A Neglected Component of Diarrhoeal Mortality?:
a systemic autoimmune syndrome involving a gluten-induced chronic inflammation of the small bowel mucosa, with extensive short- and long term negative health consequences if untreated. Symptomatology can vary for an individual over time, and often mimics other diseases, which, combined with low global awareness of the disease, results in many cases remaining undiagnosed or being ineffectively treated. Examples of signs and symptoms are malabsorption with diarrhoea and consequent under-nutrition, short stature, anaemia, stomach pain, and increased incidence of many infectious diseases.

For someone like me (middle class, educated in the appropriate diet and living in an area where gluten-free foods are affordable and available) celiac disease can be, for the most part[1] controlled through diet. It is sometimes challenging (and occassionally dangerous) to eat at restaurants and at the homes of friends but you can stay healthy as long as one buys, cooks and eats only food that is gluten-free.

The symptoms of celiac disease are sufficiently like those of a number of other conditions that it is often misdiagnosed and someone living where most food is relatively gluten-free might be a celiac and not even realize why they never felt quite well. Now imagine a famine hits that area and aid organizations fly in food from around the world. Much of that food has gluten in it. Now the adults and children who were "never quite well" become very, very ill as the amount of gluten (in proportion to their overall diet) becomes greater and greater. Soon they are having violent, painful and unending diarrhoea. The normal medical interventions do not work to alleviate the problem and indeed some of them make it worse.

Now that picture of the children has become personal nightmare fuel for me. I imagine I am one of those hungry children desperate for food. I imagine I fight to the front of the pack and hold my hands out for a handful of gruel. I imagine burying my face in my hands almost inhaling the first food I have had in days.

Then I imagine myself lying on the ground having lost everything that I ate and more curled in agony surrounded by pools of my own vomit and diarrhoea.

Somewhere today that happened to a child we thought we were helping.

[1] I don't know of anyone who has been a celiac for years who does not have "mysterious" attacks of violent symptoms when they know of nothing they have ingested that could have caused the problem. People who don't live with you always assume that you have simply "forgotten" about that off-diet item one ate. People who live with you and see everything you eat soon come to realize that it is indeed true. You ate nothing that should have made you ill and yet there you are curled up 0n the floor of the bathroom.....well, I won't detail all the symptoms.



  1. What a horrific thought. I very much empathize with your fear of not having enough to eat, and the food that you do have damaging you. It definitely looks like there needs to be a lot more awareness of celiac disease among people providing food aid.

  2. kisekileia -- I think that all forms of aid (foreign and domestic) are riddled with ableism. Everything is designed for people who fit into the "norm" (whatever that may be.) As I understand it food shipments very seldom take into account the religious/cultural issues around food. As a vegetarian I would be seriously ill if someone only gave me meat to eat -- especially if I was already weak and malnourished.

    But there are so many other ways that albeism penetrate the aid and shelter movement that I don't even know where to begin to rant about it. I was talking to a optometrist the other day who was telling me about volunteer work that she does in central America. As she put it, people who need reading glasses (just magnifying lens basically) are rendered functionally illiterate and often unable to continue in their jobs.

    In a country with no plumbing how does someone who has difficulty walking get to the the central water pipe in town -- and carry it back.

    I could go on and on....
    If you want to read a good (though incredibly depressing) blog post on the subject you might check out on Alas-a-blog.

    Of course it is easiest for me to be empathetic with the children who are celiacs (as I said, it is nightmare fuel for me) but somewhere in the back of my mind I see a small child with a club foot trying to run to truck. I see child burdened with the weight of the younger sibling they have been caring for since their mother's died attempting to keep up with the pack. I see all the girls who are afraid of venturing out for food lest they be raped.

  3. The problem, of course, is that there's not exactly a better solution, besides 'the same, but better'. Obviously, radical changes are neccessary in the long run, but that won't help anything in the short term...

    -- Base Delta Zero


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