You Have Celiac Disease Part III

I've just had my second medical evacuation in West Africa & the seemingly random & unrelated symptoms of my progressing Celiac Disease are getting scarier.  I still have almost a year before I know what is wrong.

I returned to Sierra Leone for a short time after being discharged from the hospital in Senegal.  I needed to reconnect with my husband and daughter before I left for our annual home leave in the U.S. ahead of them.  I was still desperately trying to finish a bachelor's degree (I am an example of a very, very non-traditional student) & I needed to get back to the States in time to take some on-campus courses to fill course requirements over the summer.  In all honesty, I also needed time to focus on myself & my health in a place where I could access better care.

I arrived in the U.S. in early May 2011.  One of the first doctors I saw was my gynecologist.  I was terrified about the "blood clot/birth control" connection & wanted to describe to him what was happening with my legs.  He'd diagnosed my Endometriosis, so I felt like he was the right doctor to turn to first.  He told me not to worry about the continuous birth control regimen & sent me for more ultrasounds of my legs, but felt it "was all fine."

"Here's the name of MY doctor.  See him after the ultrasounds."

The ultrasounds came back clear, so I went to my doctor's doctor.  He was an old, cynical guy.  He asked about whether or not life in West Africa was stressful.  "Yes," I told him.  Of course it was, but I did not feel that stress over the challenges of life there was making my heart beat irregularly or my leg go numb.  He smiled condescendingly, had me lie down on the examine table & then had me purposely hyperventilate.  I started to cry.

"You see, that is the sort of thing that happens when you are too stressed or anxious.  I suggest you take an anti-depressant to help you deal with all this."

I walked out of his office more depressed & ashamed than ever before.  I refused the anti-depressant prescription, but I was also completely at a loss on how to find help.  I knew there was something wrong.  This was not just about my ability to cope with stress (which, to be frank, was diminishing with each undiagnosed day of Celiac Disease).

My larger family experienced alot of sad events over that summer.  Dealing with that, trying to finish up some key courses, & get in all the important "U.S.A" things quickly filled my plate.  Before I knew it we were on our way back to Sierra Leone & I had not gotten any further figuring out what was wrong.  My symptoms continued, but I brushed them off.  "I'm just under alot of stress.  All the doctors think I am fine.  Ignore it & it will stop."

Barely a month later I could not ignore it anymore.  I got rapidly & very seriously ill.  I was misdiagnosed with malaria, but I now know I had a Celiac Crisis.  I had my third medical evacuation.  You can read about it here.   It was the scariest thing I have ever been through.  I thought I was going to die.  I was so sure it might happen, that I forced my husband to tell me over & over that he knew what my wishes were.

I spent time in both an African & European hospital.  After I was stable & the crisis had passed my family & I returned to the U.S., thinking I would soon get well.  I did not get well.  I began to drop weight quickly, very painful digestive issues appeared, & I now had numbness not just in my legs, but also in my arms, hands, & face.  I had extreme panic attacks almost daily.  I was dizzy & sometimes felt that I could not walk steadily.  At first, I depended on my family to drive my daughter & I places, because I was afraid something would happen while I was driving.  I was drenched in sweat every night & woke up panic stricken.  I had begun to experience a strange choking sensation in my throat.  I had two trips to the E.R. with terrible pain in my rib cage & this awful sense of being constantly about to faint.  I couldn't walk up the stairs without my heart pounding like mad, as though it was working double time to power my body through even the most simple tasks.

After a few weeks of earnestly trying to pull myself together enough to catch up in my online courses, I came to the agonizing decision to withdraw from college.  Trying to find out what was wrong & managing my illness was taking over my life.  I saw one doctor after another & eventually discovered my malaria misdiagnosis, but none of them could tell me what was wrong.  One of them told me that I was obviously causing my weight loss by excessive worry & I should just "go out & eat all the cookies, pasta & milkshakes I could possibly stand."  (I would now like to stand in that same doctor's office & yell, "Cookies & pasta were killing me!!")  By this point I was seeing a psychologist several times a week & taking Xanax (I still refused anti-depressants).  One afternoon I burst into tears in her office & mustered the confidence to ask, "Am I having a nervous breakdown?"

In two months I would finally be referred to a GI doctor.  She'd tell my husband & I that I probably had ulcers, but just to be safe we should run "this one" blood test.  A few weeks after that I would wake up from anesthesia & she'd end my torment with four words, "You have Celiac Disease."

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8 thoughts on “You Have Celiac Disease Part III

  1. I feel rage when reading your story. So many had missed your Celiac Disease diagnosis! I'm only gluten intolerant, but was told by a specialist that the pain in my legs was "just in your head". A year later when testing beef, I had the same symptoms. I wanted to march into his office and yell at him!
    Thank you for your stories! Sheryll

  2. Wow, you've been through a lot! I have a similar story and went through the range of emotions and sometimes wondered if it were a nervous breakdown or something mental. One neurologist told me I had too many kids and to take an antidepressant. Unreal. It is awful that we need to take our health into our own hands, but thankfully there are more and more people like you sharing their stories.

  3. I'm angry on your behalf, too. And I don't necessarily see sexism in every account of women having a hard time, but I have to wonder if part of doctors' condescension toward you was that you're female--therefore when they don't find easy answers, it must be that you're "overly emotional" or something. Although, it seems to me that there is a tendency in the medical community to blame the patient when they can't figure out what's wrong. I copyedited medical journals for 10 years, and I was always bothered by the wording related to when a treatment didn't work. It was often worded as though the patient had failed rather than the treatment (and thus the doctor/researcher) failing. Also see: the demonizing of fat people (and/or McDonalds/Burger King, etc.) in the U.S. as the obesity rate rises, rather than examining whether the medical/nutrition community itself might be operating on incorrect information.

  4. Jennifer, thanks for reading & sharing your interesting perspective as a medical journal copy editor. I do not think sexism is the only thing at play, but I do believe it plays a LARGE role. My husband does not have nearly as much difficulty interacting w/ health care providers. I am less angry now, but I have let that lingering disappointment fuel my drive to get this info out there.

  5. Thank you SO much for your story! I was diagnosed with Celiac 3 years ago at the age of 18. Since then I have come to realize so much about my body and how to treat it right. It took doctors a long time to finally check for Celiac, as they thought I was too stressed out with my parents divorce. Nope, that wasn't all. I also found out I had PCOS and Hashimoto's around that time. I felt so alone then. Now however, with people like you who are brave enough to tell your story, I don't feel alone anymore. Thank you SO much for your blog. It means the world to me.

    1. You are so, so welcome. I am really happy for you to have gotten your diagnosis relatively early in life & discovered your co-autoimmunes so soon after. I am writing this blog so people like you & I will know that are not alone in this crazy battle. Keep it up!


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