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(I talk about poop in this post in regard to the Celiac, so if that offends you, I’m sorry I’m not sorry. You’ve been warned.)

I was in the Peace Corps serving in Botswana, just finishing my first year. I was excited because I happened upon some flour tortillas at the store, the first time I’d found them in country.

GLUTEN-FREE MONTH-TO-MONTH PLAN
Botswana was an exciting place, and I was finally starting to feel like I understood the rhythms of life there. Winter was just ending, and and the avocados were plentiful. I sat down with my favorite tv show, and started eating my chips.

Half way through a bite, I felt it. It was like a swarm building and buzzing around inside of me. It got bigger and the white noise around me increased. The sounds of the show faded away as I felt this thing grow even larger, and then it shot out through my heart and into my bloodstream. I felt it course through my veins. My blood pressure rose, a fever set in, and just like that I had the flu.

I dragged myself to my bed, and for the next five days, I was hot, I was cold. I was shivering, I was sweating.

I slept.

I was shaking and I had the chills. And boy, was I weak. There was no energy left in my body.

I slept.

I wasn’t hungry, but I tried to eat. I made a pot of pasta with butter and some vegetables. I had some rice.

I slept.

I finally dragged myself to the store 30km away. And twice while shopping, I nearly passed out.

For another week, I tried to recover, still feeling weak, like something very precious had been taken from me, and there was no getting it back. I ate noodles because it was cheap and easy, and not much else.

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Then one day, there was an very vibrant shade of orange droppings. The google said it was because my body wasn’t absorbing fat, so I decided to include other things back into my diet. More vegetables and meat,  less pasta. But two weeks later, while the brightly colored bowel movements had stopped, the general fatigue and weakness did not. I went back to butter noodles. The orange droppings came back.

So I quit gluten. Some of my other friends were diagnosed Celiac before their journey. I knew I could do it. I tried it for a month, and while I still felt weak, I figured it was okay. I slowly introduced it back into my diet. First cookies, then pastas and seasonings, and other things. I didn’t feel weak like before, and the droppings weren’t there.

Though now looking back on it, there was lots of bloating, but I thought that was just from travel. And the chronic fatigue didn’t go away.

Later as the year continued, I learned how to make flour tortillas at home. I was so excited. I also learned how to make this really awesome Georgian cheese bread called Khachapuri. It was so easy and super delicious.

For about three months, that’s all I ate. I mean, the tortillas would have taco fixings and sometimes it was rice or pasta instead, but tortillas were my go-to food.

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After every meal, I had to lay down. I was zapped. My stomach would cramp, my legs and fingers would feel like they were on fire when I tried to bend them. A mile walk which used to take me no time at all, suddenly need rest stops. Gymming with the ladies was almost always canceled because I would eat lunch and then lose my will to move again.

I became very tired and easily frustrated. If my mom didn’t respond to a text message within my perception of allotted time, I would lose my shit.

Every month was the worst period I’d ever had. They lasted for weeks, and I had very little reprieve in between. My rages made me feel like I was 15 again, and completely out of control of my life.

Zebra in the Grass

In January, I read Neil Gaiman’s Ocean at the End of the Lane, and cried for 6 hours because of one line; “There is no pass or fail at being human, dear.” It felt like someone had stolen something from me again, and there was no getting it back this time, only this time I knew what it was. It was my sanity.

Luckily, my mom talked me down. She said, “Jessica: all you eat is flour. Stop eating flour. See what happens.”

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And I did. I stopped. I ate the last bits the night before, and even though it was a struggle to get up and go to the store, I did it. I hopped on the combi (bus) and was so excited to try something new, I missed a stair, and sprained my ankle. It’s like I didn’t see it. (Research will tell you Celiacs present with a symptom called Gluten Ataxia, which causes you to lose control of your motor abilities. Some people sit down and can’t get back up. Mine caused me to fall.)

But still, I shopped, knowing that I couldn’t go back to having nothing but tortillas and Georgian bread. I bought more vegetables, and chickens, and rices. I made a promise that I wouldn’t eat wheat for a month.

After two weeks of being wheat free, the storm cleared. I don’t think I realized how many Dementors were swarming me until they left. I didn’t realize how hard it was to figure out how to follow steps of a recipe or to walk to school, until it was easy and normal again.

I never looked back. It was possibly the six most scary and dangerous months of my life and I am so glad I survived it.

While I was in the Peace Corps and experiencing this, I felt little or no support from the medical office. When I told them I wanted a test for Celiac they said, “We don’t test for that, it more of a process of elimination. If you already know that gluten makes you sick, then don’t eat it.” They also said, “This sometimes happens to volunteers, and it clears up when they go home.”

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And I am positive there is no record of either of these conversations or the result of my asking in the first place in my medical file. You can learn more about Peace Corps Medical Advocacy here.

I’ve been home for about 8 months at this writing. Everyday’s a new struggle. Every morsel of food I put in my mouth feels like a landmine. I never know what’s going to set me off. There are too many options, and too many people and companies saying it’s “gluten free” without saying that it’s “not safe for celiacs”.

Every day I look for better options to get healthy and reclaim my vitality. I used to complete half marathons and then walk 2 miles home. Now just the thought of that makes me sleepy. I am here now to chronicle my new journey of gluten free eating, and holistic healing (plus some other stuff).

I hope you’ll join me.

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