When Bread is No Longer Your Friend – Celiac Disease and Me

Phase 1: Diagnosis and Reaction

In the last week of April 2012 I was diagnosed with Celiac's Disease. This covers post my first reactions to the news.

According to Coeliac UK:

“Coeliac disease (pronounced see-liac) is an autoimmune disease. Gluten, which is found in wheat, barley and rye triggers an immune reaction in people with coeliac disease. This means that eating gluten damages the lining of the small intestine. Other parts of the body may be affected”

In short foods like bread, pizza, pasta and what I have now realized is a host of others must be immediately removed from your diet FOREVER.

In order to understand the tone of what is to follow, you should know this. I have three loves in this life: the moving image (cinema, TV and photography), travel and most importantly, food (eating, cooking, hosting).

I grew up in Switzerland with a father who was a food lover and magician with ingredients. He and my mother instilled in me a love for all foods from omelets with last night’s left-overs to foie gras. I have tasted foods from more countries than I have visited and now thanks to living in London, I’ve been enjoying my weekly eclectic choices of culinary delights around town. I am not a fan of recipes. I like to create dishes from flavors or random items in my cupboard. I hate labels. And most of all, I get seriously wound up when I hear someone ordering like Sally in When Harry Met Sally (look it up – it’s a classic). The chef is offering you a dish they have created, don’t mess about with its ingredients.

And so we come to two weeks ago when my gastroenterologist confirmed the last thing I ever wanted to hear: “Jen, it’s as clear as day. It’s Coeliac.” My doc had, in one small sentence, killed 50% of my national dish – cheese fondue! I’ll be honest I was really counting on it just being Irritable Bowel. Irony of all ironies, Doc here tells me this on the eve of my birthday just as I am about to fly home to celebrate at my favorite restaurant with my family. “Jen, enjoy all your foods this weekend. Start your gluten free diet from next week”, my doc kindly offers.

It hit me. While I wasn’t dying, I was about to lose a huge part of my life. My mind immediately turned to the five stages of grief. Denial, thanks to my doctor, had been ticked. That weekend I ate pain au chocolat after pain au chocolat, croissants, baguettes, brioches, pasta until my stomach hurt so much I had to stop.

Anger quickly came when I got home and the truth of it all hit me. It didn’t help that the lovely people in my life kept telling me I was going to be fine. Yes of course I’m going to be fine! It’s not the point. People’s support and kindness just made me fume. How on earth could they understand? One friend said he’d gone on a wheat free diet for a year and it was fine. People, Coeliac disease is not a choice! Going on a fad diet is. By choice I would be going to Italy in a few weeks to enjoy pizza and pasta. Now the thought just fills me with dread and sadness.

Anger grew further. It’s amazing how much crap is in our foods when you really take the time to read labels. For example: why the heck is there gluten in English mustard, soy sauce, some white wines! I joke. It’s all I can do. Then I tried the gluten free breads. Holy molly, how dare they call that bread! It’s cardboard. Just like gluten free pasta, unless you cover it with some cheese, sauce or jam, you’re simply left with anemic-looking food. This makes me sad for me, and for my plate.

It’s still early days, and I am still very angry. I am slowly seeing signs of the next step in dealing with grief: bargaining.

I am writing this piece while I wait to see my dietitian for the first time. One of my main questions for her will be: "so, if I eat lots of gluten free stuff, how often can I have pizza or a bit of actual bread?" - I kid you not.

I’d been in pain for the last 15 years and for the last 8 months have been poked and prodded all around my mid-region. I am glad that we have now found the causes of this pain, I am. I just hate the truth of it and am in a right mind to ignore it. It’s not like I’m dying right? One side of my brain and heart think this way, then the other does see the point of this lifelong diet. Actually, I type this with possibly only 1% of me believing the latter.

Next stop on the grief train is depression… I am seriously hoping to skip that stop all together. I’m hanging onto that bargaining. I’m a decent negotiator. Maybe I can beat the system! I know… I’m not kidding anyone.

Final step: acceptance. Problem here is, I love food. I love food that I choose. I love not reading labels. I love a menu. I love feeling hungry and not knowing what I’ll end up eating. I love a big bowl of buttered linguine and a glass of red wine. Half a baguette with some Brie or Camembert. A cold beer in the sun. At this stage, acceptance seems futile.

I could have written an uplifting piece about dealing with getting diagnosed with Celiac's disease, instead I wanted to share with you the initial stages and how for me there is nothing healthier than being angry about this. It’s ok. So often in society we are made to believe that we have it easier and so many have it worse. The fact is sometimes, some news, development or disease will make you feel like the world as you know it is falling apart. So before you brush yourself off, ignore everything and end up in years of therapy down the line: get angry, feel everything you need to feel while in therapy (I am)! And sing. Pretend you’re in Glee and sing as loud as you can (if you’re as bad a singer as me, I recommend somewhere out of earshot or your car). Failing that… there’s always tap dancing! And stay away from Top Chef and food-related movies!

Now – does anyone have a recipe for a gluten free baguette they want to share?

*Note: Having now spoken to the dietitian, the outlook is a little less bleak. Information is power people.