09/16/2015 08:05 EDT | Updated 09/16/2016 05:12 EDT

What to Do Next After Being Diagnosed With Celiac Disease

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Male patient in gown sitting on exam table in discussion with doctor in exam room

You're in constant abdominal pain, feeling tired and sluggish all the time, irritable and losing weight without even trying. What's wrong? You visit the doctor's office far more times than you want to, but they can't find the problem for all this suffering. Feeling calm or happy are distant memories as you trudge through each day, sick all the time.

Back to the doctor you go, only this time she (he) has a diagnosis: celiac disease.

"Whaaat?" you think to yourself. On one hand, you feel so relieved to know you're not crazy. On the other hand, you have no idea what to do next.

Your head fills with all these questions and concerns:

• Who will advise me?

• What can I eat?

• Where can I eat safely?

• What do I do in my kitchen?

• How will I ever eat at friend's place or with family again?

• How do I know what I can and cannot eat?

• How will I learn to read labels?

• Can I survive without all my favourite foods?

You're not alone. I remember the first time the doctor called me to tell me my son had celiac disease. I was horrified! A disease? What kind of disease? What did this mean? Will he be okay? Everything was a blur. You need to keep everything as-is until the endoscopy.

It's alright to cry, get angry, lose your cool. It's alright to mourn the loss of gluten from your life. But then, you have to pull up those big girl panties and get cracking on some lifestyle changes to bring you back to healthy and thriving. Breathe, accept the diagnosis and trust that you will get there. After a few months, life gets easier and the celiac patient starts to feel better.


Here are 10 things you can do to help yourself or your loved one:

1. Remember to count yourself lucky: There are no drugs to take and you can lead a perfectly normal life eating gluten-free. It is not life-threatening like an allergy. If you make a mistake, you can recover.

2. Get an education: Learn what gluten is and where it can be found. Keep a list of foods you would normally reach for that have gluten in them and develop the habit of staying away from them. Put your attention on the goodies that Mother Nature provides: vegetables, fruit, meats, fish and milk products.

3. Check in with your gastroenterologist/nutritionist: A great place to start is to get professional counselling from professionals who are educated in celiac disease and the gluten-free way of life. If they can't help you they certainly can refer you to the right resources.

4. Get used to reading labels and calling companies: I shop with my phone even years later. Larger companies have 1-800 numbers on their packaging. Simply call to make sure there is no gluten in the product or on the same line as your product.

5. Reorganize and replenish your pantry: There will be much you will either be giving away or throwing out so it doesn't pay to dwell on it, Just do it! Consider it an adventure in trying new things to eat and testing new recipes. Keep a reminder list taped to the inside of the pantry door of what to stay away from.

6. Take a baking class: Find a gluten-free cooking or baking class and get cracking. It will be more fun to experiment with new recipes and meeting other people who are in the same or similar situation. The sooner you find delicious replacements, the less you will miss your favourites.

7. Find local restaurants: There are some gluten-free restaurant guides, but I prefer to call ahead and ask the owner/chef directly what I can expect from them in terms of gluten safety and food choices. More and more restaurants are working towards accommodating the gluten-free community.

8. Grow a second skin: At times we are sadly surprised with how little some of our friends and family members will do to accommodate us. Not everyone is unsympathetic, but somehow we always feel surprised by those who are, and need to toughen up so we can move on to what ultimately matters most: our health.

9. Get in touch with resources in your community: You don't need to go it alone. Your local Celiac Support Association can guide you with many resources and helpful tips. Check out your local gluten-free Facebook community to find others dealing with the same situation and you will see how easily connected you can be. I have listed some helpful resources on my website to help you. CLICK HERE.

10. Check out gluten-free bloggers online: They have many recipes and helpful, up-to-date information you will find useful. Google them and find one you like best!

You don't need to feel deprived. You do need to feel you have choices. You will restore your health, feel better than you have in a long time and, as time passes, living gluten free will become much easier to manage.


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