So, You’ve Just Been Diagnosed With Celiac Disease

New to GF

What the heck do you do now?

You’ve been feeling pretty crappy for a long time, but you haven’t been able to pinpoint the cause.

Somewhere along the line — maybe you heard about a friend who was diagnosed, maybe you saw something on the Internet — but at a certain point, you started to wonder if there was a chance your weird symptoms could be due to celiac disease.

Your doctor was doubtful, but sent you for a blood test. When the results came back, the markers indicated that your instinct may have been correct. Finally, you had a gastroscopic biopsy of your small intestine, and the results were definitive: You do, in fact, have celiac.

So now what? Here’s a quick primer to help guide you through the next few days and weeks.

First: don’t panic

It can be a little overwhelming to suddenly learn that many of the foods you’ve loved your entire life are now completely off-limits. But you’ll be okay — trust me. I’ve been there.

What you need right now is support and information, and there are good places to find both.

If your gastroenterologist hasn’t referred you to a dietitian, seek one out yourself. If she or he does home visits, all the better. The dietitian will be able to tell you about a few key concepts: she will explain where to look for the primary sources of gluten; she will outline some of the hidden sources of gluten; and she will brief you on the all-important risk of cross-contamination.

Obvious gluten sources

The broad strokes go something like this: The primary sources of gluten in the diet are wheat, rye and barley. Anything made with these ingredients is off-limits. Health Canada defines gluten free foods as foods containing fewer than 20 parts per million of gluten, so it’s important that you are aware that gluten, even in tiny amounts, can be harmful to your body.

The subject of whether oats are gluten free is a little bit controversial. Oats themselves do not contain gluten, but they are commonly grown and processed in environments that are full of gluten, so unless oats have been specifically grown and processed in gluten free facilities, and are clearly labeled as gluten free, it’s best to avoid them.

Hidden sources of gluten

You may have already picked up on this: you’re going to get really good at reading labels, because, starting now, you have to read the label on every single food item up to see if it has a gluten-containing ingredient.

Learning how to spot hidden sources of gluten is a little tricky, and it involves watching for things like malt vinegar, modified corn starch and “flavourings.” Malt vinegar is derived from barley; modified starches, unless they indicate how they have been modified, may have been contaminated with gluten in the modification process, and the same goes for unspecified flavourings.

You’ll learn to be particularly watchful around salad dressings, sauces and soups. Soya sauce, unless specifically labeled gluten free, is not safe. Condiments, potato chips, and candies should be assessed with care.

Cross-contamination

At home, you will have to make some changes. First up: you’ll need a new toaster, dedicated only to toasting gluten free breads. You can’t toast your GF bread in a non-dedicated toaster, because it will come into contact with crumbs, and that will render the bread unsafe for you.

Next, you’ll need your own butter or margarine dish, and your own mayo, mustard, peanut butter and jam jars. If someone at home who isn’t eating gluten free dips a knife into your spread and leaves crumbs behind, you’ll be exposed to gluten. So get yourself a black marker and start labeling everything that’s yours as “Hands Off!”

And you’re going to need a clean place to prepare your food. I suggest you get your own set of cutting boards that will be exclusively used for gluten free foods. You should also avoid using wooden spoons or porous utensils that have been used to prepare non gluten free foods in the past.

Reach out

Are you overwhelmed yet? Well, it is a lot to take in. But you can find lots of information and get ongoing support through the Canadian Celiac Association. They publish a handy Pocket Dictionary that identifies gluten-containing ingredients, and for a small annual fee, you can receive their newsletters and mailouts. Local chapters even offer support groups and meetings on a regular basis.

And it’s not hard find places to ask questions, get information and share stories online. There are many Facebook groups, and you can follow the hashtag #glutenfree on Twitter. Pinterest is loaded with GF recipe boards. That said, do be discerning about who you trust for information. Online forums and groups sometimes offer more speculation than information.

Focus on the good stuff

And finally, focus on the foods you like that are naturally gluten free and avoid highly-processed gluten free substitutes. I’m going to tell you the truth: it will be a rare day when you’ll find a gluten free substitute that has a flavour and texture as good as the original. So substitute with a grain of salt. No — I take that back, because substitutes tend to have too much salt, sugar and fat anyway. Substitute cautiously, is what I mean.

The learning curve is a bit steep, but, like I said, you’ll get through it. Pizza and beer are overrated anyway. And on the upside, lots of good foods, including my own number one and two comfort foods — potatoes and cheese — are totally gluten free.

For more information, read our helpful guide to preparing a gluten free dinner.


We can help

If you or someone in your family has recently been diagnosed with celiac or non-celiac gluten intolerance and you live in or near Halifax, Nova Scotia, we can help. We can offer a personal in-home consultation with a professional dietitian or a personal shopping tour to help you learn to navigate the gluten-free aisles at the grocery store.

Find out more here, or contact us at info@lifeaftergluten.ca.

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