I get so tired of people shying away from me just because I can’t eat certain things or because I have major scars all over my body. I’m a normal person just like everyone else, so today I decided to devote a blog entry to Celiac Disease, explaining a little about what it is, how it effects me, and why people shouldn’t be scared of me.
Celiac Disease aka Sprue is an inherited(yes inherited, NOT contagious) autoimmune digestive disease that damages the villi of the small intestine and interferes with absorption of nutrients from food. That basically means the lining of my small intestine is damaged from eating certain foods (gluten and other proteins found in wheat, barley, rye). So, my body is attacking itself every time I consume those things. It can appear at any point in a person’s life by the way, not just infancy or older age, I got diagnosed when I was 22.
If I accidentally consume a “no-no” food, my body tells me within minutes. It feels like there is a demon inside my stomach, trying to claw it’s way out. My stomach makes awful noises and usually I’m on the floor in the fetal position trying not to cry. I’ve heard stories where peoples’ intestines have been damaged by not following a proper diet and so they’ve had to have surgery to remove a section of their intestine. Doesn’t sound fun, I’ll stick with being careful thank you. Another side effect is that some people can get lesions…I am one of those people. The really sucky thing is that the lesions from Celiac Disease like to travel together and be symmetrical. So for example, I had dinner at my friend’s house the other day and she conveniently forgot that the sauce she made for the pasta had wheat flour in it(she likes to “test” me and thinks it’s funny when I end up on the floor). After the whole stomach demon thing, that evening I got 6 new lesion clusters on my legs, 3 on each one. See? It likes to be symmetrical and even. In the past I’ve gotten some on my arms, and then on the other side of my body they might appear on my arm, but still mostly symmetrical. They always leave scars on me and take forever to heal!
I eat a gluten free wheat free diet, I take supplements to replace the nutrients, minerals and proteins I lack, and I go to the doctor to get checked up on. I’m not contagious, even though I might look like a walking infection. No one else in my immediate or slightly extended family has been diagnosed with this, but my mother is pretty sure it’s from her side of the family because she said my great/great great family members all had histories of stomach issues like IBS and lactose intolerance(common misdiagnoses for Celiac).
I’m not expecting sympathy or help from anyone, I’ve been taking care of myself great for about 5 years now. I just hate it when I go on a date and he orders a burger and I order a salad b/c the menu doesn’t have anything else “safe” for me and then I get the wide-eyed look from him. He also doesn’t get a mouth kiss at the end of the night because he ate that burger, if I swallow his saliva from kissing, I will feel the effect of that burger bun. I don’t deny the kiss because I’m am awful date, I deny it because it hurts me.
Celiac Disease isn’t anything to be dramatic about, no need to give me the wide eyed stare, or excuse yourself to go to the restroom and then never come back. I’m not asking you to adopt my diet or put medication on my sores, or even help me to identify if something has wheat or gluten in it. I mean sure if you are cooking dinner for me, then yeah I’d appreciate it if I could eat the lovely meal you’ve made, but I could tell you the brands of noodles and bread and whatnot that are okay for me.
If you ever encounter me, please don’t treat me like I’m infected or have something contagious. If you’re dating me, hold my hand, put your arm around me, make me feel like you want to be around me. If we are eating together, don’t stare at me like I’ve just grown a third eye because I order a salad. Smile, stare into my eyes and tell me “good choice”. If you think you’d be interested in kissing at the end of the date, don’t eat anything that has my “no-no” foods in it. Trust me, I take note of what you eat and I will remember. We can talk about Celiac Disease anytime you want or not at all, I could answer almost any questions you have. I feel that the more informed someone is about something, the more comfortable they are with it and I’d love to make people more comfortable with me.
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