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Trying to Find the Joy in Celiac Disease November 3, 2013

Posted by Christine Coleman in Celiac Disease, Food.
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It was exactly two years ago now that I was feeling sick. I remember it clearly, as it was immediately after the St. Louis Cardinals magical run to the 2011 World Series championship. Before they reached that pinnacle in late October, there was a tense month of baseball — and I dealt with the tension by drinking a lot of beer, game after game. Once November arrived and I felt sick, I remember joking that all that beer had made me sick.

Turned out my joke was partially true. And the night the Cardinals won the World Series was the last time I had “real” beer.

celiacdiseaseIt took several different doctor’s visits starting in November 2011, a variety of tests and no answers to finally end up at a gastroenterologist. Just going over my family’s health history led to a probable cause: celiac disease. My Dad had it, and the doctor wanted to know if I’d been tested for it given the symptoms I was having. No. But new blood tests confirmed I do indeed have celiac.

And then everything changed.

Celiac disease, if you’re not familiar, is a condition that damages the lining of the small intestine and prevents it from absorbing parts of food that are important for staying healthy. The damage is due to a reaction to eating gluten, which is found in wheat, barley, rye and oats. The symptoms are many and varied — physical sickness, fatigue, rash and so many more. The treatment — and the only treatment — is a gluten-free diet.

Which might sound simple. But not necessarily.

Think about how much food is a part of your life. Now think about what it would be like to suddenly be told you couldn’t ever have much of what you typically eat, and love, without it making you sick and causing damage to your intestines.

So many of the things I used to eat  and love previously have been off-limits since I was officially diagnosed with celiac in February 2012 — not just obvious things like wheat bread or cereal and pizza or fried chicken, but even things like Chinese food (soy sauce has malt in it, which contains gluten) and Twizzlers (there is flour in it to keep it from sticking to the packaging) and so many more. And then there are other things you wouldn’t expect to have gluten, like gum and drugs. Not all do, but I learned the hard way that some brands definitely do. Ironic to get sick from an allergy pill, isn’t it? And the side effects of accidentally having gluten? Not pleasant.

Oh, and beer of course has gluten, which has changed my going-to-a-ballgame experience. Yes, some ballparks do have gluten-free beer but it’s not the same to me. Hot dog buns too have gluten, of course. And the “cheese” that comes with ballpark nachos. (Sorry to disappoint, but it’s not really cheese.)

Needless to say, eating out can be a challenge. I’ve gotten more comfortable with asking many questions if I’m unsure about the ingredients, I’ve learned the value of apps like “Find Me Gluten Free” (especially when traveling) and I’ve grown to appreciate cooking for myself since that’s the easiest way of all to know just what I’m eating.

Now, after nearly two years of being gluten free and having successfully made it through one holiday season with my second approaching quickly, I’m trying to find an appreciation in successfully dealing with celiac. Today was my “cooking day,” as every Sunday is — it’s easier for me to just cook things over the weekend to then have throughout the week, and I try to find new recipes since I often find myself getting burned out on cooking. (Thank you, Pinterest!)

My family and friends and coworkers have all been accommodating and helpful, especially as we’ve learned our way through this together — me more than anyone else, obviously, but so many have done much to make things easier for me. Their efforts, and their understanding, is very much appreciated and makes things easier.

Yet I still feel too often like I’m missing out. Adjusting mentally is probably the most difficult challenge, and it’s one that I do continue to struggle with regularly even after 21 months. Finding the right attitude in coping with celiac takes effort, even though feeling better now definitely makes up for it.

Although I do still miss donuts. And so much more.

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Comments»

1. linda - November 4, 2013

Great post. And I just read yesterday that some shampoos and soaps and things have gluten. What the heck for?

Christine Coleman - November 4, 2013

I’ve read that before too, and totally don’t understand why.

2. Cheryleryl - November 7, 2013

i can’t imagine what you’ve been going through. though, it does give you opportunity to experiment with recipes to make them gluten-free so you can find ways to enjoy versions of your favorite things you had to give up. and yeah, gf beer is not the same.

Christine Coleman - November 7, 2013

Cheryl, I’ve learned that the gluten in beer is what I really liked. Ha!!


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