I’m often asked about my story. How did I find out I had celiac disease? What were my symptoms? How did the gluten-free diet help me? How long did it take until I felt better?
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 check my thyroid and do a full spectrum blood test for food allergies. “OK,” I agreed.
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.)
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 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 medication available to treat celiac disease, it’s 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 awoke from my procedure – he told me he could tell right away that I had celiac disease. He showed me pictures. My small intestine looked like it had hundreds of tiny paper cuts all over it. However, in order to know for sure, I would need to wait for the biopsy results. Sure enough, a few weeks later, the biopsy results confirmed the celiac diagnosis. It was finally made official – for better or for worse – I had celiac disease, a lifelong affliction treated only by a strict gluten-free diet.
Post Celiac Diagnosis
In the coming weeks, I was extremely stressed and sad. You may not realize it, but you really do think about food all day. You eat food 4-6 times a day. You have to constantly think about food.
My brain was mush. I felt like I was losing my mind! I was forgetting things and feeling sad. It took me awhile to adjust and figure out things for myself. (I later learned that I was probably addicted to gluten. Read: How I Overcame My Gluten Addiction.)
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 tools I can recommend for someone new to a gluten-free lifestyle is to seek help of others who keep a strict gluten free diet.
My friend is a holistic health specialist and is gluten-free. She came to my house and helped me do a pantry sweep, took me grocery shopping, and taught me basic cooking skills since I’d be eating at home more often. She also taught me how to set up my gluten-free kitchen.
Another way I sought out help was from a few gluten-free friends. They recommended their favorite gluten-free brands to me and that helped me decipher what brands I should try and which I should stay away from. It can be extremely overwhelming and expensive to find “good” brands you know will taste good and help you with your cravings. Ask for help – I found my gluten-free friends couldn’t wait to share all their knowledge with me. I ate up everything they told me!
Most of all, I learned that things get easier with time. I’ve become a more confident cook. I was willing to explore new recipes and even create my own onion soup mix and more! I realized that gluten-free cooking isn’t much different than cooking in general. I found that you simply have to find the right substitutes and play with recipes to make them your own.
I encourage you to read the FAQs to learn more about my favorite gluten-free things.
Healing from Celiac
Over time, I became a gluten-free guru, however, I still suffered from painful bloating and embarressing gas from time to time (it just wasn’t as painful, but still annoying).
Over the years, I learned that healing from celiac disease requires so much more than just a gluten-free diet. When you take out the bad stuff, you need to replace it with good stuff.
I encourage you to read more about How I Healed My Gut After a Celiac Diagnosis. It is the most important read of all and I detail how I put my celiac disease into remission (and I have a blood test to prove it!).
The Birth of a 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 diet.
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, but I also love to share tried and true recipes that I’ve turned gluten-free.
My other passion is sharing information that helps others manage their chronic symptoms and who desires health. Wherever you are on the gluten spectrum – from celiac disease or a 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’ve become a certified holistic nutrition and health coach and help others on their journey to become gluten-free AND reclaim their health.
Remember, being gluten-free doesn’t mean you can eat gluten-free junk food; rather it requires you to clean up your diet for the better.
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 and medicine as thy food.
XO,
Jenny