I’m often asked how I knew I had celiac disease.
What were my symptoms?
When was I diagnosed?
How long did it take until I felt better?
Did the gluten-free diet help me?
In this post, I’ll share with you my celiac disease diagnosis and personal journey to become gluten free.
My Celiac Story
Unlike many individuals with celiac disease who spend years trying to figure out what is wrong with them, I stumbled upon my diagnosis after a frank discussion with my doctor.
I went for my annual exam. My doctor asked me some simple questions about my health and encouraged me to share anything that might be bothering me.
I told her I thought I had IBS as I was feeling very gassy and bloated every night. I asked her to recommend some OTC gas medicine.
She told me my symptoms did not seem “normal” and suggested we run some tests. “OK,” I agreed, and in my ignorance didn’t even think to ask what tests.
The Initial Celiac Diagnosis
Within a few days of my visit, my doctor called me and told me my blood tests came back positive for celiac disease. What?!?
At the moment her call came in, I was sitting in the airport parking lot waiting to pick up my parents. I was in the middle of eating my lunch, a sandwich from Subway and a Diet Coke (classy, I know).
My doctor said she did not know much about celiac disease except that it requires strict adherence to a gluten-free diet. She told me to seek out a GI specialist and nutrition expert. She also recommended that I stop eating gluten immediately. (Yes, I tossed the rest of that Subway sandwich in the trash.)
The Official Celiac Disease Diagnosis
A few weeks later, I found myself at the GI doctor. He assured me that many blood test results are simply false positives, so not to worry, it might not be celiac disease after all. In hindsight, I learned he was dead wrong and that a blood test is 99% accurate for detecting celiac disease.
I got the sense that my GI doctor was skeptical about celiac disease, which is another reason I believe you must be smarter than your doctor going into these exams. (Read my post, 10 Facts About Celiac Disease and Gluten Sensitivities Your Doctor Doesn’t Know.)
Even though the blood test indicated celiac disease, he told me it was important to know “for sure” because having celiac disease requires a drastic lifestyle change.
He also said if there ever was a cure, vaccine, or other treatment options available for celiac disease patients, it would be important to have a confirmed diagnosis. He recommended an endoscopy procedure where he would put a scope down my throat and take a biopsy of my small intestine. That is the “gold standard” diagnosis procedure, he said.
So I did it – and when I woke from my procedure – he told me he could tell right away that I had celiac disease. He showed me pictures of my small intestine. It looked like it had hundreds of tiny paper cuts on it. However, to know for sure if it’s celiac, he said I would need to wait for the biopsy results.
A few weeks later, the biopsy results confirmed the initial celiac diagnosis. It was official, and for better or for worse, I had celiac disease, a lifelong, genetic autoimmune disease treated only by a strict gluten-free diet.
Post Celiac Diagnosis
In the coming weeks, I was extremely stressed, sad, and overwhelmed at the prospect of eating a lifelong gluten-free diet. I thought about food all day long.
My brain was mush too. I felt like I was losing my mind! I kept forgetting things and I felt sad It took me a while to adjust and figure out things for myself. This diet came with a high emotional burden, no doubt.
My sister-in-law assured me that I wasn’t going crazy. She said that oftentimes when someone has to focus on loss or trauma, they forget the little things. She said it was completely normal for me to feel sad and forgetful, and that this, too, shall pass.
Her words were reassuring… and she was right.
Coping with Celiac Disease
The best tool I can recommend for someone new to a gluten-free lifestyle is to seek the help of others who follow a gluten-free diet and who are healthy and positive examples of what a good life with celiac disease can look like. (And avoid negative people who wallow in their sickness or are negative about life.)
I also recommend that you read as much as you can about celiac disease to become more knowledgeable than your doctor.
In fact, I’ve dedicated my book, Dear Gluten, It’s Not Me, It’s You, and my website, Good For You Gluten Free, to teaching people the realities of celiac disease and what it’s like living with gluten disorders. I’m proud to say that today I’ve been able to reach millions of people, helping them learn, grow, and heal their bodies through the gluten-free diet via my website, book, and social media platforms.
A few tips to helping you manage your newfound diet:
- Ask for recommendations. Ask your friends for recommendations on restaurants and products they enjoy. No need to reinvent the wheel.
- Plan your meals. You want to eat at home as much as possible, and meal planning is your friend.
- Read a lot. Learn as much as possible about label reading, facts about celiac disease, and symptoms. And for goodness sake, be able to answer the question, What is gluten?
- Find support. Connect with other people with celiac disease and/or who follow a gluten-free diet. You will meet new friends because of celiac disease. (Special shoutout to Shayna and Traci, my celiac besties!)
- Get help. I was lucky to have worked with a wonderful health coach, Andrea, who taught me how to eat right and even cook basic foods at home. While I’m no longer offering nutrition coaching services due to a busy schedule, I do recommend these celiac practitioners. Please note that there are many health coaches, nutritionists, gluten-free practitioners, and dietician specializing in celiac disease that can help you.
Healing from Celiac
While I slowly but surely became a gluten-free guru, I still suffered from painful bloating and embarrassing gas (it just wasn’t as bad as before, but still annoying).
Over the years, I learned that healing from celiac disease requires so much more than just eating gluten-free foods. When you take out the bad stuff, you need to replace it with good stuff.
I encourage you to read more about How I Put Celiac Disease Into Remission and Healed My Body. I think it’s the most important article I’ve ever shared.
The Birth of Good For You Gluten Free
Out of my gluten-free journey comes the birth of Good For You Gluten Free and my life as a celiac disease educator and advocate.
Good For You Gluten Free offers a place for me to share how I’m feeling, my delicious gluten-free recipes, and information to help others find their way as they navigate the gluten-free landscape. I hope my personal experiences with celiac disease can serve as a guide to you on this difficult but necessary journey.
While I have found my passion in the kitchen, it has been a learning process, no doubt. You’ll see that I now feel confident enough to create new recipes and have become quite the expert in the kitchen.
My other passion is sharing information that helps others manage their chronic symptoms and who desires health. I even wrote the book on restoring your health from celiac disease, Dear Gluten, It’s Not Me, It’s You.
Wherever you are on the gluten spectrum – from celiac disease or gluten sensitivity to an autoimmune disorder or wheat allergy – I am here for you. Everyone in the gluten-free community is welcome here!
Also, since the birth of Good For You Gluten Free, I went back to school to study nutrition. I’m a certified holistic nutrition and health coach and Certified Gluten-Free Practitioner. I’m uniquely qualified to help others on their journey to become gluten free and reclaim their health.
I’ve become an outspoken advocate for celiac disease, the gluten-free diet, and healthy living. I want everyone to think beyond the pillbox to see food as thy medicine.
XO,
Jenny
PS: Your turn. I shared how I knew I had celiac disease. Please share your stories in the comments. I’d love to learn more about you!