Whenever I meet someone new, and they find out that I have celiac disease, they are almost always interested in learning about my story. They typically want to know how I found out I had celiac and if it’s hard to stick to a gluten-free diet. If you’re interested in learning more about my journey to becoming gluten-free, please feel free to read my celiac story.
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 and 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 if she could 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.
The Initial Celiac Diagnosis
Within a few days, my doctor called me and told me the blood tests came back positive for celiac disease. At the moment her call came in, I was eating a sandwich from Subway (no, I did not finish the sandwich, but I was almost done with it anyway) and sipping on a Diet Coke (classy, I know). She told me she did not know much about celiac disease except that it requires adherence to a strict gluten-free diet. She told me to seek out a GI specialist and nutrition expert. She also recommended that I stop eating gluten immediately.
The Official Celiac Disease Diagnosis
A few weeks later, I found myself meeting with a GI doctor. He assured me that oftentimes blood tests give false positives, so not to worry, it might not be celiac (in hindsight, I learned that the blood test was 99% accurate for detecting celiac disease). 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 or medicine available for 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.
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.
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 has a Masters in Social Work and she 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.
Coping with Celiac & Seeking Help
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 over to my house and helped me do a pantry sweep, took me grocery shopping, and taught me basic cooking tips that were essential to improving my cooking skills (since I’d be eating at home more). She also taught me how to set up my gluten-free kitchen.
Another way I sought out help was from the 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 gluten free friends couldn’t wait to share all their knowledge on me and I ate up every minute of it!
And 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. I learned that celiac disease is so much more than just a gluten-free diet. When you take the bad stuff out, you need to replace it with good stuff. I encourage you to read more about How I Healed My Gut After a Celiac Diagnosis in this post. It is the most important read of all!
The Birth of a Gluten-Free Blog and Celiac Disease Advocate
Out of my gluten-free journey comes the birth of this gluten-free blog and my life as a celiac disease advocate. Good For You Gluten Free is a way for me to share my easy, simple and clean cooking tips with my friends, family and you. I’m asked all the time for this recipe or that recipe or what it’s like to have celiac disease … now all this information is available on this blog for everyone to read, learn and digest.
My one disclaimer is that I’m not a trained cook and I don’t know much about the science behind cooking and baking. The only thing I can assure you is that I like to cook, I love flavors, and I’m willing to experiment with different recipes. I’m also very fast, efficient and not above taking shortcuts whenever possible. Who has time to cook and bake all day? You won’t find me mixing my own flour blends – no, not me – I use the stuff I find at the natural grocery store.
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 journeys to be gluten-free AND healthy. 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 and see food as your medicine and medicine as your food.
XO,
Jenny