Connecting the celiac disease and food allergy/intolerance community together by sharing our stories to food freedom. From our beginning struggles to striving after a diagnosis, we can all relate and help each other out by sharing what we’ve learned and our unique personal journeys.
Another Freedom Feature for you this week! Today we’re welcoming the lovely Kristina Schumacher, the celiac blogger behind Ms. Modify! I know you’ll find Kristina’s story very relatable. Her path to diagnosis, concerns, and difficulties are ones I hear all too often from celiacs. But there is hope and her story reinforces the fact that we are not alone and we have the ability to modify, adapt, and keep on living a joyful life!
background: who are you?
I’m Kristina, a Behavior Analyst by day, a cooking lover, Pinterest obsessed, reality TV watching, Pure Barre loving girl by night. In February I married my best friend in the Bahamas in front of our closest friends and family! Did I mention I have celiac disease? Yeah, I have celiac disease. It took me a while to be able to say those words. It’s been quite a roller coaster ride over the past five years, to say the least. But I’ve figured it out and I’m here to share my journey with you!
what was life like before your diagnosis?
Life was rough before diagnosis! I always remember having stomach issues and getting sick a lot with random things, like strep and ear aches, often as a kid. But then things really changed. My senior year of high school I had surgery for a non-cancerous tumor in my breast and after that I swear my body was never the same! My stomach issues started getting worse and worse. My doctor even told me to keep a food journal to see a pattern, but when I did he couldn’t figure it out since nothing seemed the same (since gluten is in a lot of different things!). I did food allergy testing and had none!
It was to the point where I would be nervous to eat out because I’d play the waiting game to see if I’d get sick. I knew it was food related, but not sure how. Looking back now I can laugh about it, but I literally created a list of random things I thought I was allergic to including alcohol, liquid smoke (ha), orange chicken from Chinese restaurants, and many other things (hello gluten!… beer, certain bbq sauces, and soy sauce!).
how did you finally find the right doctor and get tested?
There was a time when I didn’t trust doctors because they couldn’t figure out what was wrong. Interestingly, my mom is an infusion nurse for autoimmune diseases. I can remember calling her one day, crying, saying something is so wrong with me, I think I’m dying. My symptoms were getting worse. Everything from bad stomach issues to headaches, insomnia, fatigue, joint pain, and hair loss! My mom made it her mission to take me to every specialist in Southern California, but sadly they couldn’t figure it out. I heard so many things from lupus to rheumatoid arthritis to social anxiety (What?! Ya!)…. it was such a scary and frustrating time. I was in graduate school at the time and so many doctors kept telling me I was under a lot of stress and it was making me sick. No joke, one day I was watching the Dr. Oz. show and he did a segment on celiac disease. When I saw the list of symptoms I immediately called my mom and said, “I know what’s wrong, I have celiac disease.” After that day I went to my doctor and insisted he test me for it. I remember he didn’t know that much about it and really thought I wouldn’t have it because I didn’t have the classic “celiac look” (yup, he said that!). Once all my testing came back, he personally called me to tell me I had it and apologized for saying that.
how did life change after the official diagnosis?
I’m a different person now! I feel great, no more stomach aches or any of the other symptoms, which has been life changing. I remember actually being excited when I got diagnosed because that meant I knew what was wrong and could avoid gluten and start living life again! The one thing that I was not prepared for was how hard celiac would be on the other aspects of my life. Yes, I feel better which is huge! But, life is different now. I can’t go out to dinner with friends without planning ahead of time, traveling is much harder than I ever thought it would be, even buying cosmetics, I now have to take a double look at things. I’ve always been a planner, perfectionist, type-A person… but celiac took it to the next level and I was not prepared for that.
why did you start your blog and what did you hope to achieve with it?
Getting diagnosed with celiac was harder than I thought it would be. I went from being sick in bed, to being in denial and still feeling sick while just going through the motions. How is it I change people’s behavior for a living, but couldn’t seem to change my own?!
Finally, I decided celiac disease was no longer going to have control over me and made a promise to change my diet and my life…while celebrating and embracing all that I’d been given and start living each day to the fullest. That is how I developed Ms. Modify.
So tell me:
+ What was the hardest part about accepting your diagnosis/new diet?
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