Living with Celiac: A Response to a “Tilty” Tweet

Ok. Here’s the deal there will be some “poop talk” in this article but it’s necessary to understand this disease. I trust you will bear with me.

I suffered unknowingly from celiac disease from about the age of twelve until I was thirty-two. That is twenty years of my life for those of you keeping track. During them time I had no idea what gluten was or that there was a disease involving it. What I did know is that I was sick more often than I was well. I tried to avoid milk and dairy products because lactose intolerance was something that I did know about. I blamed my inability to completely avoid dairy for my continued bouts of painful cramping and diarrhea. I was sick more than three days out of any given week. Looking back on it I can’t believe how high my pain tolerance was or how much patience I had for just being sick all the time. Anyone who knows me will tell you that I have precious little patience at all.

Two years ago I developed constant abdominal pain. I couldn’t walk without pain radiating out from my stomach. I was not comfortable in any position and it was markedly worse after meals. My abdomen was tender to the touch so I suspected the likely culprit, my gallbladder.  I was tested and nope, nothing. I tried the recommended gall bladder diet, all starch no grease only chicken potatoes and toast while I waited to see the doctor and even after because I didn’t know what else to do and I was somewhat better on it. I lived on this bland diet for weeks.  I was so happy in the second week to find out I could add in beets. Their root flavor was a boon to my palate but I was still in horrible pain. Dairy was not the issue since I wasn’t eating any. I wasn’t even buttering my toast. However, I noticed that it was worst after I ate toast. While I waited to see the gastrologist my husband suggested I remove bread from the equation since I’d eliminated everything else. I was very thorough this time checking into what additives I would need to avoid and being vigilant to the point of paranoia.

Within ten days I went from so much pain that the pressure of an ultrasound was excruciating to zero pain. The gastrologist told me he could test me for celiac but I would have to start eating gluten for the test to be accurate. I decided to pass and just eat gluten-free. He advised that if I had further symptoms he would need to scope me from both ends. I am, needless to say, very motivated to avoid contamination.   Some days are easy peasy and I have no problem saying “no” to birthday cake. The price is simply too high. I bit into regular pasta to check and see if it was done without thinking once. I spit it out and washed my mouth out and the little bit that I swallowed before realizing made me sick off and on for a week. Other days though are very hard and I would rather not eat than eat the options I have. Sometimes I just want to walk into a store eat something without having to read the label and be confident that I won’t get sick. But that is not an option. The reality of celiac is constant vigilance.

What is especially hard is when people don’t know the difference between Celiac suffers and band wagon fad dieters.  Coworkers may not understand why I would rather skip an outing than risk the awkward situation of showing up somewhere and finding that I literally cannot eat anything there. Well I can and that is where the misunderstanding comes in. I can physically eat it. I won’t go into anaphylactic shock. I’m not going to die but I will be sick off and on for literally a week and a half while the cilia in my intestines heal. When ever anyone introduces me and says I’m gluten-free, I correct them and say that I have celiac. This isn’t a lifestyle choice. I’m not concerned that gluten is treated cruelly in processing. Gluten creates a hostile situation in my intestines that is painful and disgusting. Therefore if I make choices in the process of  avoiding it that offend you, I don’t really care, since you don’t have to live with the pain and I do.

So what is Celiac disease and what makes it different from just eating gluten-free. First I’ll take on the easy part. The fad of eating gluten-free is based on a myth that gluten is intrinsically unhealthy. That is true in about the same way that kittens are 100% dangerous to everyone because they pose a danger to people with asthma. They do pose a serious health risk to asthmatics and while we should all be sensitive to this as a fact, it  isn’t a concern for everyone. Is it? On the flip side is an orange fundamentally healthy? What about if you have a citrus allergy? See what I mean? Manufacturers are invested in telling you gluten is intrinsically evil because in case you never noticed gluten-free substitutes are expensive. (I know they’re expensive to make as well.) They can also be god awful tasting. Gluten tolerant people of the world, I urge you to just eat gluten! Do it for all of those who can’t.  It is delicious and it’s not crystal meth. Just eat your bread and be grateful it has all its tasty parts intact.

Celiac is a very real and painful disease of the intestines. You can read this definition from the Mayo Clinic but I can simplify it for you. It is not simply that the body cannot digest gluten. Gluten “triggers and immune response” that causes the body to attack the lining of the small intestine. It causes damage that takes time to heal. This is the reason that it takes time to become symptom free after cutting out gluten and also why one small exposure can cause symptoms that drag out for days. So no I can’t just take a day off from being “Gluten Free” and I’m starting to worry less about how it inconveniences people without dietary restrictions. I plan ahead, bring my own food and take ownership of keeping myself safe and I don’t appreciate being lumped in with band wagon health nuts.

Thank you for reading. I’ll put my soapbox away now.

Thank you to twitter for the inspiration. 🙂 Here’s looking at you kid.


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