When you are diagnosed with celiac disease, gluten intolerance or a gluten allergy, changing to a gluten free diet can feel like turning your life upside down. You must give up favorite foods, learn to shop and to eat out safely, all while your body adjusts to major changes.
I was diagnosed with celiac disease in the 1990s, before gluten free foods were widely available and before most doctors in the US even thought about celiac disease or gluten intolerance. After almost 30 years, 4 countries and 3 continents, I am an expert in living gluten free almost anywhere.
From Junk Food Junkie to Gluten-Free Goddess
Before diagnosis, I lived mostly on Yodels®, pizza, fried chicken, and Chinese take-out. Giving all of that up left me reeling; what else would I eat? I was too busy to cook every day, and I had no idea what to make. At first, I lived on steamed rice, fruit, and plain Hershey bars, and hoped it would all turn out to be a mistake.
No such luck.
At 6 months, I had a slice of pizza, just to test…big mistake! I was sick for a week. So sick that I had to crawl from bed to the bathroom. On the first night I slept on the bathmat next to the toilet. After that terrible week, I stayed gluten free. I grew strong and healthy again and have remained so ever since. I promise you: once your body stabilizes, being gluten free is not the disaster it feels like now. You can do this.
Give Yourself Time
Change takes time. For some of us, giving up gluten is like breaking up with your first love: dramatic, painful, drawn out. Don’t pressure yourself to ‘get over it.’ The emotions are real and valid.
You must stop eating gluten once you have your diagnosis. If gluten is poison for your body, and being gluten free is the antidote, why wouldn’t you?
Be realistic; you will crave pizza, or bagels, or cake, or sandwiches. When that happens, acknowledge it, and don’t give in. Eat a new gluten-free favourite food, drink some water, distract yourself with a favourite activity.
My cravings disappeared after a year; they decreased as I found new foods that I liked just as much, and as I got used to the idea of being a celiac. Promise yourself to stick with it for 6 months. You will feel so much better that going back to gluten won’t tempt you anymore.
Find New Gluten-Free Favourites
When I started my journey to gluten freedom, we didn’t have shelves filled with gluten free versions of pizza, cookies, breads, and the like. We didn’t have widely available gluten free flour mixes and cookbooks, either. I had to quit my beloved Yodels and pizza cold turkey.
I started by looking for substitutes. I changed from sandwiches on bread to sandwiches on rice crackers. That didn’t work very well; the crackers, like the Styrofoam they so greatly resemble, crumble at the first bite. I settled on wrapping everything in lettuce. I made my own lettuce cups, tuna wraps, and BLTs. I still do; yesterday’s lunch was roast chicken and pesto with sautéed sweet red peppers wrapped in a romaine lettuce leaf. Delish!
Let food boredom make you braver. Replace your breakfast donut with a microwave-baked apple with cinnamon and raisins. Switch your burritos for fajitas with corn tortillas. And I learned to make my own brownies (oh yum). You will find your replacements too.
Explore different cuisines: vegetarian, meat, different cultures…many recipes are naturally gluten free, or easily converted. Perhaps, like me, you will expand your food horizons. From a kid who never ate vegetables, I became a fan of sweet potatoes, spinach, fennel, and more.
Vegetables and fruits are all naturally gluten free; so are beans and peas and quinoa. Learn to make your own fried rice, pad thai, and fajitas.
Read the Label
Expect to spend more time shopping for food. Embrace it! Reading labels can be like solving a mystery. You will learn to spot hidden gluten, and to understand what’s in your food. When I started, I was amazed by the ingredients in some processed foods like canned pasta or frozen pot pies (2 of my pre-diagnosis home staples) — so many chemicals, so much salt! Stepping away from those ingredients is probably just as good for your health as giving up gluten.
Reading labels also came in useful later; when I changed countries, I learned the German words for gluten and gluten free first. Being gluten-free is far easier in Canada, Europe & Australia than in the US. Labels are clearer and restaurants seem to understand the concept much better. Don’t let being gluten free stop you from traveling!
They say ‘try some cake’ and you say…
Unfortunately, you will still find people who don’t understand that eating gluten free is not your lifestyle choice. Even with so many cookbooks, websites and scientific articles about celiac disease and the need for a gluten free diet, some of your friends or acquaintances will decide that you are choosing to cut out gluten to lose weight (as if that worked!) or to gain attention.
None of their misconceptions matter. What matters is that you need to eat this way, and you can’t ‘just taste a little.’ Sure, you can try to enlighten them. Explain that you have a medical condition, and that you become very sick if you eat even the smallest amount of gluten. If you (and they) have an interest in the medical details, and you are confident and knowledgeable about them, by all means dive into it.
But you don’t have to be the Gluten Professor. Just say that you have no choice and change the topic. Likewise, when eating out your diet is yours to manage. Insist on food you can eat, but don’t let it become the main conversation topic at the table. It’s absolutely ok to say to someone nosy ‘I don’t care to discuss this with you. Have you seen the flowers blooming outside today?’
You are more than what you eat
The most important lesson I learned in my transition is this: Celiac disease is not your life. Friends, experiences, adventures…all are more important in the long run than a piece of pizza. Talk with other celiacs and you will discover that everyone has their own level of tolerance. Some of us take it seriously, scrupulously adhering to the diet. Others let their diet define their lives, and in the process make everyone around them define their lives by it too. Still others ignore their diagnosis, chasing other reasons for their illness (I do NOT recommend this!).
Their choices are irrelevant. Do what works for you; don’t worry about what anyone else thinks.
One day you will wake up, as I did, and realize that in eliminating gluten you haven’t really lost anything essential. You have grown into the kind of person who ‘just doesn’t eat that stuff’, and doesn’t miss it. You feel great, love what you eat, and have a life beyond your digestion. Your transition is finished. Welcome back to the world!