…for the rest of my life

Posted by in celiac, food

When I turned 30 (11 years ago!), Kenny surprised me with a weekend away at Deep Creek Lake with friends. When we arrived, he had a huge spaghetti dinner for me that night knowing that was my favorite meal.

When I was in college, I frequently scarfed down a bowl (or two!) of cereal from the cafeteria FOR DINNER on my way to play rehearsal.

To this day, pancakes are my favorite thing to eat on a lazy weekend morning.

I share this with you because I am a typical American diet-eater. I love my carbohydrates. It’s a good thing I love vegetables, meats, dairy, and fruits as well, or I’d go hungry.

Since October of last year, I’ve been getting blood work done, and seeing different doctors trying to figure out just what is going on with my 40-some-year-old digestive system. Last month, I received a call from my gastroenterologist that told me my latest blood work came back strongly suggesting that I have Celiac disease. Then, finally, after getting a biopsy done on my small intestine this spring, my Celiac disease diagnosis was confirmed. On May 18th. I’m not allergic to gluten. My body just cannot tolerate it. My immune system sees it as a dangerous substance, so it fights it when it reaches my small intestine. I got the Jets and the Sharks battling it out in my midriff.

Finding out that you have Celiac disease, after spending a lifetime loving on the one food that your body physically rejects, it’s just plain shitty. But, let’s keep this post family-friendly and happy! Here are some fun facts on Celiacs Disease:

  • “The precise cause of celiac disease isn’t known.” – mayoclinic.org (encouraging, isn’t it?)
  • John F. Kennedy suffered from celiac disease, but never was diagnosed with it since it was still a fairly unknown disease for adult diagnoses when he was alive.
  • “The term coeliac derived from the Greek κοιλιακός (koiliakós, “abdominal”), and was introduced in the 19th century in a translation of what is generally regarded as an ancient Greek description of the disease by Aretaeus of Cappadocia.” – answers.yahoo.com

GFThere is no cure for Celiac. Eating gluten-free is my medicine.  It’s the only way to avoid the unsavory symptoms it causes, and to keep from further internal damage.

Yesterday, I spent the morning in Pittsburgh’s Celiac Center. I met with three doctors: a gastroenterologist, a nutrition specialist, and a holistic psychologist. I met a few other patients who had been “gluten-free” for years or months longer than me. There was a time to meet with some volunteers from a “celiac meet-up” group and one thing they said really stood out to me. I was telling them how my husband and I love to check out new restaurants, and we love traveling to Pittsburgh to eat Thai, Indian, and in other new restaurants. She looked at me and said, “I generally don’t eat out anymore unless I know there is a gluten-free area in their kitchen. Otherwise, I’m very bitchy to the servers, demanding that my food is safe.”

I understand. Even the smallest particle of gluten can make some Celiacs sick. I even read in one article about “cross-contamination of gluten in Celiac patients” that if your restaurant salad comes with croutons (after asking for a salad without croutons), you need to ask for a completely new salad since the crumbs will make you sick. I’m fine with my gluten-free area in my own kitchen, but I’m not ready to be that somebody in a restaurant. I’m also not ready to give up eating out in new restaurants with my husband.

My gastroenterologist looked at me and said, “I’m sorry you have to jump on the gluten-free bandwagon, but you have no choice.” I asked him if I caused myself to become a Celiac patient. He assured me that it was nothing that I ate or didn’t eat that caused it: it is genetic, even though I was the first person in my family to be diagnosed with it.

Kenny has been so incredibly supportive. He’s picked up gluten free crackers and bread for me, stopped in at Gluuteny in Squirrel Hill (ironically across from what used to be Gullifty’s, where I indulged in many gluten-laden desserts in high school!) with treats for me to eat during our boys’ birthday parties, and found the most delicious hard cider for me to try (Angry Orchard…MILES better than Woodchuck). I admit this diagnosis was slightly reassuring (it’s not cancer!), but it’s also lonely. Now I understand why they had me meet with a holistic psychologist at the Celiac Center. Support is really important at this beginning stage.

Holiday family dinners are going to be tough. Summer BBQs are hard. Telling someone who has invited you over for dinner that you are gluten-free might bring some eye-rolling (since it’s super trendy to be “GF” right now: here’s a tip…don’t go gluten free to lose weight. Do it because it makes you sick). And road trips are harder now to plan for.

I keep telling people that I’m fine, this is an okay thing, really! At least I don’t have to be on medication, or have chemo. But deep down, it’s one of the harder things I’ve had to deal with. This is for the rest of my life. And since I plan on living at least another 41 years, that’s a long road ahead.

I’d love to meet other Celiacs. Please give me a shout-out if you are too!