My Journey: Malnourished in America

This is Part Three of my story. If you are just starting to read, please go back and start with:

Part One: A new view of food

Part Two: The start of my journey

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When I hear the word, “malnourished,” the image of a child in Africa with an extended belly immediately comes to mind.

I certainly didn’t expect to hear my doctor use that word to describe me.

It’s hard to say how long I had celiac disease before my symptoms erupted like a dormant volcano that finally decided to explode. Celiac disease is genetic, so I was born with the gene. However, a stressful event usually triggers an autoimmune disease, and I believe that event for me could have been the birth of our fourth child.

**

Looking back at the seven years since then, I can now see all of the symptoms that were starting to build. I frequently struggled with vertigo, which I know now can be one of the many neurological symptoms caused by celiac disease. I had developed a strange skin condition on the back of my neck that would get worse in times of stress.

By the time I was diagnosed, I’m sure I had it for at least a few years, but more likely six to seven years. With this condition, when the body is exposed to gluten, my immune system begins fighting my own body. It destroys the villi in the small intestine. These fingerlike projections have the job of absorbing nutrients from food. Mine were basically gone by the time my doctor did an endoscopy to confirm my diagnosis.

In other words, I was eating plenty of food. But my body wasn’t able to absorb the nutrients from my food.

**

When I look back, I can see the signs that I was constantly trying to make up for this nutritional deficit.

I often work from home, but when I would go to the office to work, I would pack a bag full of snacks. I would make jokes to my co-workers as I went to the fridge every hour to grab my next snack. Most of them were healthy options, like almonds or veggies and dip, but I was self conscious of how many times I walked back and forth to the fridge while my co-workers sat still and kept working.

I remember one time making a joke to one of my friends that there must be something wrong with me because I wasn’t heavier. I’m not saying that I was in great shape or even thin, but I ate constantly. It seemed strange that I would eat so much and so frequently and not gain more weight than I did.

Once my doctor explained how celiac disease works, I realized that my jokes were actually based on truth. I felt like I needed to eat nearly every hour to keep up my energy level throughout the day. My body couldn’t properly absorb nutrition from the food I was eating, so I was constantly seeking an energy burst from the next snack.

As time passed, I was growing anemic and low on nutrients.

By the time I crashed, I was literally malnourished.

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During the last year, this has been one of the most frustrating parts of this journey. Until my intestines heal, I can’t properly absorb nutrition. So, I feel like I fuel my body from one meal to the next. I don’t have a reserve that I can draw from if I go too long without eating.

I carefully plan out my food to eat protein, fruit and veggies that are rich in the nutrition I need to get through the day. I make sure I always pack plenty of food when I leave the house because I don’t want to get too hungry. I take vitamins, but my body can’t fully absorb what’s in them, so I’m still running low on nutrients.

The good news is that my most recent endoscopy showed that my intestines are starting to heal! This has been a huge boost to me and has given me so much hope!

**

Read the whole series:

Part One: A new view of food

Part Two: The start of my journey

Part Three: Malnourished in America

Part Four: Solving the gluten free puzzle

Thanks so much for reading. Please feel free to leave me a comment below or enter your e-mail address in the box to the right to get my latest post in your e-mail inbox.

4 Responses

  1. Carolyv

    Emily, I am following your story! It is heart wrenching to say the least and I feel so badly for you. It must be difficult to keep going some days. I had no idea celiac disease could affect your body so much. Those of us who read your entries are blessed to be better informed about it. I am filled with compassion for you, and you.are on my prayer list. And I’m thanking God for you and your family!

    1. Thanks, Carolyn… I think one of the hardest parts about any autoimmune disease is that the symptoms are so strange and cover so many aspects of your health, that people are often treated like hypochondriacs. I’m super blessed with a great doctor who diagnosed me with the first round of tests. Other people go years or even decades without knowing what’s wrong! My story does get better, but I wanted to write about it to increase awareness for others who might be right in the middle of it. I recently read that autoimmune disease is the largest epidemic facing our nation right now, but most people don’t even know about it or understand it.
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