In June 2010, with a new round of stomach pain and other symptoms, I was sent to a gastroenterologist for an endoscopy. This wasn’t my first endoscopy, but it had been many years since my previous one. This time, they were looking for an ulcer, thinking that explained my constant stomach pain. Given the stress I had been under during the previous year, it was our best guess. At this point, I’d had 18 years of playing “stump the doctor” with my various symptoms and health issues. I had been so ill during the recent weeks, to the point that I was on a liquid only diet and rapidly losing weight.
About a week later, my head buzzed as my doctor talked about my endoscopy and lab results. Instead of telling me I had an ulcer, or worse, telling me they didn’t know what was wrong with me, he said words I’d never heard before:
“Your small intestine showed marked villous blunting.”
“Your tTG and IgA scores are the highest I’ve ever seen!”
“…diagnosis of celiac disease”
“You can’t eat any gluten ever again.”
I was sent home with the stack of various test results and lovely photos of my esophagus, stomach and small intestine. Umm, thanks!
Though my head was spinning, and from more than my constant brain fog, I was extremely relieved to finally have a diagnosis after so many years of doctors shrugging their shoulders. The doctor gave me no information on celiac disease or gluten, just told me to go “Google it”. I headed home and started searching the internet and checking out books from the library.
Overwhelming. That’s the word I would use to describe my first feelings as I figured out what it would mean to eat gluten-free. I’ve heard from many others that they felt the same way when they were diagnosed. It is totally normal to feel that way, and also to mourn what this change will mean to your lifestyle and your family’s lifestyle.
Thinking back on that point in time, there are a few things that really helped me get through those first few weeks. I thought I’d share them with you in hopes that they would help you with your transition.
1) Find a gluten-free mentor. Ask your friends, neighbors, co-workers, or doctor for the name of someone with celiac disease that would be willing to talk to you and help you get started. A friend’s celiac aunt met me at the park within a week of my diagnosis and brought me a gift basket full of her favorite products, as well as several pages worth of tips she’d written out. This was so incredibly helpful for me! Even if you can just pick someone’s brain over the phone for a few minutes, just for some encouragement and tips, it can really help. I really think this kept me from having a meltdown! An online community can also be a great source for “virtual mentors”. Getting a doctor’s referral to a dietitian or nutritionist can be helpful as well.
2) Enlist a friend or family member to help you purge your pantry and kitchen. My husband helped me with this process. We referred to lists of unsafe ingredients that we found online and in books and went through our pantry and freezer item by item. By getting all of the “off-limits” food out of the pantry and kitchen, it not only removed any temptation from those products, but it removed any risk for cross-contamination too. We packed all of the food, condiments, strainers and toaster up and were able to distribute it to 3 families in our church. They were blessed by it, which really cheered me up!
3) Take a look at your favorite recipes and see what you can do to adapt them to gluten-free. I found this much less overwhelming than trying out all new recipes for myself and my family. Almost all of my family’s favorite recipes could be converted to gluten-free very easily by just swapping a few ingredients. We could still enjoy chicken tacos, just switching from flour tortillas to corn tortillas and making sure to buy a gluten-free broth and seasonings. We could still have grilled cheese sandwiches or club sandwiches if I picked up a gluten-free bread. Our favorite spaghetti dish – easily gluten-free by switching to a gluten-free noodle.
Other posts that might be helpful for you as you embark on this new journey:
14 ways we celiacs have been glutened – I rounded up oops experiences from bloggers that have been at this a while. Hopefully you can learn from our mistakes!
My favorite resources as a newly diagnosed celiac: this book and this book.
Traveling is tough, and so is staying with relatives that eat gluten. Here’s my tips on how I avoid gluten while staying with others.
I’d love to hear about your gluten-free journey or your tips for the first few weeks after diagnosis.
Friday 21st of July 2017
I don't know what I would have done without all the information I received from the Celiac Association of Canada when I was diagnosed When I travel I always take the restaurant cards I can purchase from the Association. They are available in 52 languages ( might not be an accurate number). I carry one for every country I will be traveling to, just present them to the wait staff.
Wednesday 21st of June 2017
Joining the National or local chapter of the Celiac Association is the best guarantee of getting the most reliable information, contributes to advocacy of Celiac Disease, and puts you in touch with other like-minded folks without having to search. Often the chapters run education sessions, mentoring, and shopping trips as well as skills like label reading!
Better yet, VOLUNTEER! You can learn an awful lot helping out your local chapter!
Wednesday 21st of June 2017
My name is Deborah Rayment and I am the Program Coordinator for the Canadian Celiac Association - Edmonton Chapter. I am writing to you to request permission to reprint your blog My Gluten Free Journey - 3 tips to help your transition to living gluten free in one of our upcoming issues of the Celiac Circular which is a newsletter published by our chapter 6 times per year. We would cite your authorship and provide a link to your online blog too.