By: Rachel Sircy
I have posted two entries on this blog so far, and both of them have mentioned my celiac disease. My first post, the introductory one, also mentioned my Christian faith. This post is about how those two things came to be very deeply connected for me.
First, let me give a brief explanation to those out there who may not know exactly how celiac disease works. Celiac disease is an autoimmune disorder and it is believed to be genetic. It is not a disease that a person can catch, only inherit. It is a genetic disorder in which my white blood cells are hardwired to fight off a particular substance in wheat, rye, barley, and all grains derived from or related to those grains. This substance is actually a string of a few different proteins which have been lumped together and labeled “gluten.” From what I understand, everyone’s body is hardwired to protect itself from too much gluten. But for some reason, my white blood cells freak out at even microscopic traces of gluten. When any trace of gluten enters my digestive system, white blood cells flood my small intestine and begin to cut it to pieces. They cut off small finger-like structures – known as villi – which line the small intestine, because the villi are how nutrients from food are absorbed into the blood stream. If there are no villi, then no gluten can be absorbed into the blood stream. But then, if there are no villi, then no nutrients from any food that a celiac consumes can be absorbed into the blood stream.
The funny thing about celiac disease is that its symptoms are really all over the place and a person can have all, some or none of them. Historically, it has been one of the most misdiagnosed diseases in America. The reason that the symptoms seem random and unrelated to each other is because what celiacs actually suffer from is not the disease itself, but the chief problem that the disease causes, which is malnutrition.
When I was first diagnosed with celiac disease, a gluten free diet seemed impossible and insane. I thought that people couldn’t possibly live like this. It was made more difficult because I had never heard of anyone who did lead such a lifestyle. My husband and I were newlyweds with hardly any money when I was told that from now on I would have to start buying special bread that cost $6.00 a loaf if you bought the good stuff, and $3.00 a loaf if you bought the cheap stuff. The cheap stuff was nearly inedible. And though I was not a very experienced cook when I got married, I had a little repertoire of dishes that my husband and my guests seemed to like. The only thing was that every single one of them contained gluten in some form or other. Worse still, I liked to bake more than I liked to cook. Now, instead of buying one 5lb bag of flour that worked for any baking, dredging, battering, etc., I found that I was going to have to purchase at least five 1lb bags of different kinds of flours.
Everything I knew about how to cook and how to stay on a grocery budget was obliterated by a simple trip to the gastroenterologist.
I suddenly found that I needed flours I’d never heard of – white rice flour, amaranth flour, potato starch, soy flour, tapioca starch and almond flour to name a few. Each little 1lb bag of flour cost two to three times what one 5lb bag of regular flour cost. And, I found that I would need to become a chemist on top of everything else. I couldn’t just open a bag of flour and use it anymore. Flours had to be mixed together in precise ratios and those mixtures were good for one thing and one thing only. Potato starch, white rice flour and tapioca starch could be mixed together to make a flour suitable for dredging meat. But I used that same combination as the flour to make a beef gravy and ended up with a substance that was not gravy, but was grayish and was the consistency of wet sand. I was told that I would ALWAYS need a substance called Xanthan gum, that I would need it for every baking recipe. So, I spent about $12 for 8oz of the stuff. I just threw the remaining 4oz or so of it away last year. I figured that after nearly 8 years, it probably wasn’t good anymore.
In short, everything I knew about how to cook and how to stay on a grocery budget was obliterated by a simple trip to the gastroenterologist.
I wasn’t sorry, exactly, that I had gone to the doctor. I had been sick for quite some time – years, actually – but the symptoms were so random and varied that no one had ever thought to attribute all these nagging little complaints to one illness. In childhood, I had a few gastric problems – gas pains, occasional constipation – but nothing that wouldn’t seem normal for any child. The first signs of celiac for me were random little things that were often attributed to a lack of sleep and possible anemia (I wasn’t anemic as a child, but was borderline and always had the outward symptoms). I developed allergies and frequent bronchial infections which were often accompanied by acute asthma. These allergies were not always with me. They began to develop when I was in the fourth grade, and year after year the number of things I was allergic to increased and the intensity of the allergies increased as well. I was constantly fatigued. I have memories of telling my mother as she woke me up for school, that I felt just as tired on waking as I did when I went to bed. That feeling would sometimes persist throughout the day and there eventually came to be week-long stretches at a time when I would go through the motions of daily life in a complete haze. I would get on the school bus and by the time I reached school, I had no memory of getting dressed, no memory of what I had eaten for breakfast, no idea what homework I should be turning in. Until I was 22 years old, I had this vague sense that something was not right with me. But I didn’t know how sick I was because I didn’t know, or couldn’t really remember, what it felt like to be well.
After my diagnosis, being a Christian person who believes in miracles and divine healing, I began to pray to be healed from celiac disease. I didn’t want to suffer with the symptoms anymore, but neither did I want to have to up-end my whole life to get well. I just wanted to be made whole and be able to eat whatever I wanted. I prayed for months on end but I never felt any better and I never felt any hope of getting better. I decided to quit the gluten free diet and just go on blind faith that I was healed. I decided that I was fine. I should have listened to my father when he told me that faith can be many things, but it should never be blind. The more I ate what I wanted, the sicker I became until one day at work, I broke down crying silently at my desk. My stomach hurt, my body ached all over, and I couldn’t think. I couldn’t understand what was happening to me. God was a miracle worker, so I had been told. Why wasn’t this miracle coming?
I decided to go back on the diet, but I was angry at God. I wanted to just be well and normal at the same time. I didn’t want to have to watch everyone else eat my mother’s homemade chicken and noodles while I sat with a sad little bowl of gluten free spaghetti that was melting into the chicken broth my mother poured over it. I bought food that tasted worse than the boxes it came in and I prayed. And slowly the answer came to me. There never would be a healing. I wasn’t meant to get over this. One evening, after attending a women’s church conference, I fell to my knees on my bedroom floor and asked God to explain Himself. If I wasn’t going to be healed, fine, but I demanded to know why. And there was no thunder, no lightning, just a thought that occurred to me at that moment. There was a lesson in this disease that I was supposed to carry with me for the rest of my life. My body was the physical mirror of my ethereal, eternal soul. I couldn’t consume any food that I wanted and expect that food to fuel my body. Certain things would cause me to suffer from malnourishment. Not all food is food for me. Some of it, some very innocent and delicious-looking food, is actually the opposite of food for me. A simple, seemingly wholesome piece of whole wheat bread can take away my ability to be nourished by anything.
And this paradox was also true for my spirit. I have known the longing as a Christian to just be like everybody else. It isn’t convenient to make time to feed my soul with the things that really nourish it, like prayer and Bible study. It cramps my entire lifestyle to make room for God. But if I try to nourish myself with anything other than God, I will quickly find that I am too sick to be nourished by anything.
As C. S. Lewis put it: And out of that hopeless attempt has come nearly all that we call human history—money, poverty, ambition, war, prostitution, classes, empires, slavery—the long terrible story of man trying to find something other than God which will make him happy.
I will be the first one to tell you that while changing everything I ate and the way that I cooked – and tripling my grocery bill to boot – seemed impossible to me at first, it has been worth every moment of deprivation, every annoyance, every pan of gritty gravy. I have been sick and now I am well. Six dollars a loaf is a small price to pay for bread that can alter your quality of life.
Suggested Reading: “Mere Christianity,” by C. S. Lewis
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Because of this, we’ve started taking Walker with us when we visit our weekends-for-now-retirement-for-later home near Beaufort (on Cat Island – go figure) and leaving Ryder at home. It’s steps from the marsh with huge windows and a large screened porch, interesting new smells and lots of birds and other wildlife to observe. It seems like cat heaven – and Walker is loving it, while Ryder, sadly, is missing it. (We did try, but she spent the entire visit flattened under a low piece of furniture and bit us when we tried to load her up to return home.)
way to volunteer at 9:30 in the morning to make stick horses AND get to work by 8:30? Don’t get discouraged.
the Midlands and I’ve followed her story for several months on Facebook. Her name was Kaylin.
others walk alongside of us can be more helpful than anything else.
Every Woman Blog 