From foodie to celiac

For over half a year I knew I should get tested for celiac disease, but I waited. To be honest, I did not want to find out. I knew enough about the disease to know how life changing it would be and I didn’t want to contemplate what those changes would mean for me, Kay and the  lifestyle we enjoy together.

Maybe all my symptoms were not such a big deal. Maybe they weren’t related. Maybe they would solve themselves somehow if I exercised and ate more fruit and vegetables.

I mean, I love food. Who doesn’t? I was always proud to eat anything, although I’m not the biggest fan of sauerkraut, which ironically is gluten free. I love traveling and trying all the local specialties. Kay and I are always cooking different types of food at home and at work I am known as the “cookie monster”, although I think this is just a nicer term for “garbage disposal”, because if there is any food around, I will eat it.

So when I went in for my blood results, my heart dropped when the doctor told me my gluten antibody levels were through the roof. It wasn’t 100% medical proof, but I knew then that my entire world had just changed.

I slipped into a dark emotional hole. I was supposed to keep eating gluten before my biopsy, but it took several stressful weeks to even schedule the appointment. With all the uncertainty about my health care, each gluten overdose renewed all the symptoms that had started driving me crazy.

At the same time, I felt stupid. I didn’t realize how long I had been putting up with things that I considered normal. Things that I considered passable as they slowly got worse and worse over the years. How I put off visiting the doctor because I was apprehensive about insurance costs and revealing a preexisting condition that will follow me around for the rest of my life. So when I went to the doctor because I couldn’t sleep at night from skin rashes, I was desperate for relief, not more waiting.

I’d been working out for a month and I felt like a whale when I looked down at my belly. I felt ugly inside and out. I was also surprised how much the news depressed me. I’ve known depression before and I know that it can be related to celiac, but I wasn’t prepared for the feelings of hopelessness and anguish that came with the gluten-free sentence.

As I work on my Swiss naturalization, the realization that I cannot eat zopf or aromat anymore came as huge blows to my Swiss pride. We have so many nice bakeries in Switzerland. So much wonderful Italian cuisine. Our go-to meal of fondue and bread is out. No more beloved älplermagronen. No more pub beer or my favourite affordable drink in bars: panache (shandy). But what hurts most is thinking about my mother’s food. Her cookies and breads. Her rolls. It’s enough to make me want to crumple into a pile and dissolve into nothing.

Everybody says it will be OK. I can eat other things. I can still eat the same recipes if I change things, but it’s not true. I will never eat my mother’s cookies from my childhood again. I will never eat fresh baked Zopf from the bakery again. There is a whole lot of “never again” going on right now and it’s too much to take at times.

The fact is, gluten is in a whole lot of things, cross contamination is a real worry and some things just cannot be gluten free. Like samoas from Girl Scouts or Swiss army chocolate that Kay brings home.

The biopsy confirmed everything 100%, My villi are flattened to hell. It’s pretty clear I cannot ignore this anymore without risking serious malnourishment or worse things. And I’m ready to start feeling better and having more energy in the future.

Although I’m still looking forward to traveling, I do dread eating abroad and all the stress and worry I will have wondering whether the food in restaurants is safe for me. No more trying every food possible. I must be extremely cautious.

I know it could be much, much worse, but having lived a very blessed life so far, I can honestly say that this is the worst thing to ever happen to me.

…and donuts! No more donuts!?

4 thoughts on “From foodie to celiac”

  1. I’m so sorry, Katie!

    I went through a lot of what you described and still cringe at having to be what I consider the worst culinary sin: a picky eater–and I, a former pastry chef! And I’m lucky, I don’t have celiac (instead I have severe IBS-D) so I can “splurge” without life-threatening consequences (just varying levels of illness), but I’ve found–after almost a year and a half of avoiding the problem foods (which, for me, include onion, garlic, and a lot of fruits and vegetables high in FODMAPs along with wheat, barley, and rye) I don’t miss the missing things as much because the trade-off is worth it. The not being sick every day is worth it. The being able to go new places without constantly scanning for the nearest restroom is worth it. The fact that my clothes don’t “shrink” 2 sizes (or more) between the time I get dressed and mid-afternoon is worth it.

    It will take time, but eventually I believe you’ll find the ‘worth it’ bits for your sacrifice, too.

    1. Thanks Jenn. I’m crossing my fingers I don’t have to do an elimination diet with these changes. Onions and garlic, ohhh! Food restrictions are the pits.

  2. Hey! I just discovered your blog (via weddingbee… I’m also a Zurich-based bride planning an American wedding. you have become my virtual partner in crime :-). I have a friend in Zurich who also has Celiac disease… maybe you’d like to meet her and commiserate/share notes? Added bonus: she runs an AMAZING gluten-free bakery. Her stuff is seriously awesome. Check out her website: http://www.lenasdelights.ch

    1. That’s awesome! I’m sure you are getting familiar with how difficult it can be, but at least you’ve got a great exchange rate on your side at the moment? Congratulations on your engagement and thanks for the link to Lena! :)

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