You Have Celiac Disease Part II

The strange, seemingly disconnected symptoms continue.  Unraveling the problem is even harder, because I am living with my family in the developing world.

Then the scary things started to happen.  I had crazy muscle spasms, especially in my back and legs.  I had terrible pain in my bones, especially in my rib cage.  I had swollen glands off & on.  Sometimes I had a hard time speaking, like I couldn't get words out or I stuttered.  I couldn't concentrate.  I was taking on-line college courses & I noticed my ability to concentrate on class work & reading dwindling rapidly.  I even noticed here, on my blog, my ability to think through writing a post getting harder & harder.  I couldn't smell very well, I couldn't taste very well, & my eyes were watery & blurred sometimes.  I told my husband, "I feel like I have a fever behind my eyes sometimes."

Then came the numbness in my legs, especially the right one.  It was a painful, stiff, creeping feeling.  It tingled from my toes, up the back of my calf.  I would wake up in the middle of the night with my leg completely numb.  My foot would feel big & fat.  As the pain & numbness in my legs grew, I spent more & more time examining them.  What could it be?  I thought maybe I had to stretch more, walk more, but it didn't help.  And then I noticed something else . . . the kind of weight I was losing.  It was muscle mass.  My leg muscles, & arms also, were losing mass.

The funny heartbeat had returned too, a strange symptom from years before had come back & it was scaring the heck out of me.  I was living in one of the least developed countries in the world, if I had a heart problem there were no options.  I tried to be calm & logical, but I knew something was wrong.  I was worried, "If the something is very, very bad, what about my daughter?"  I was petrified thinking about the repercussions for her, if something went seriously wrong for me in this place.  I made plans to see doctors when we had our annual home leave in the U.S.

Then one afternoon the pain & numbness in my leg got intense.  I tried to stretch it.  I tried to rest it.  I elevated it.  I put ice on it & then heat.  Nothing was working.  It was such a strange horrible sensation, it made me a bit short of breath.  I took some Advil & by bed time thought maybe I could sleep through it & in the morning everything would be okay.  It was not.  We called our medical evacuation insurance, which provided consultation over the phone.  They asked me questions about the pain & numbness, how long, how much, my lifestyle.

"How old are you?"


"Do you take birth control?"

"Yes.  Continuously."

A long pause.  "It is possible this is a blood clot.  You should arrange to go to the nearest hospital."

Again, hospital conditions in West Africa are awful.  I had done this before though.  I was not and am not, appalled by those conditions, my heart is broken by them.  To be perfectly honest, I did not want to expose myself to the deep sickness of heart that lingers in an African hospital again, but I was now terrified.  My husband & I drove to the nearest hospital.

I won't describe all the details, but basically we arrived, had to wake-up a young doctor who had trained in the U.S., but was not actually finished with medical school, I was admitted, & started on blood thinners . . . without an ultrasound.  Three days later, still in the hospital, the staff admitted that the only doctor in the country able to do the ultrasound I needed was not even currently in Sierra Leone.  I had my second medical evacuation, again to Senegal.  This time I went alone, because I was totally unwilling to put my husband & child through the stress a second time.

After three days on blood thinners, a Senegalese doctor performed an ultrasound on my leg.  He declared, in angry French, that their was nothing wrong w/ me & berated his nurses for calling him into the hospital on a Sunday.  I was taken back to my room where I cried alone for a few minutes.  I was so relieved, but I was also more worried than ever & I was ashamed.  What was wrong with me?  Was I losing my mind?  What had happened to my leg?  The nurse came in with one last meal before my discharge.  She served me tea, a Senegalese fish dish . . . & bread.  If I had only known.

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