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my story with celiac disease


I was diagnosed with Celiac Disease at 13 years old, but let me backtrack- I wasn’t the greatest student in school as I could never focus and was always easily distracted and couldn’t retain any information. My teachers told my parents that something was wrong with me and suggested Adderall as did doctors and even my mother. My dad researched into what could cause brain fog, lack of focus, etc in young children. He found a blog post with another dad who was experiencing something similar with his daughter and eliminated her processed carbs and increased her protein.


Every morning my dad would wake up early and cook me a high protein breakfast, pack lunches/snacks, or made sure that the food ordered through school (I went to private at the time) I was eating at lunch was high in protein, this meant a lot of protein bars and eggs. Well it worked. Eliminating the foods that I loved as a kid like candy bars, Lay’s Potato Chips, garlic bread, and pasta increased my focus and performance in school. The teachers noticed a night and day difference with me.


However, I neglected to tell my dad that I was 💩 myself over 4x a day or not going at all days on end. Why? I’m honestly not sure, I did grow up in a household where if you’re not bleeding nothing’s wrong with you and I was also a very anxious child so it might have been that fear factor of “omg what’s wrong with me?!” That I didn’t want to acknowledge (I honestly blocked out a lot of this part of my childhood so these are just options but honestly only God knows why I didn’t speak up.) I was in the nurses office almost routinely, about an hour or so after lunch I would head down to Nurse Ray’s office due to a tummy ache. I’d lay down, take medicine sometimes, or wait for someone to pick me up and take me home. This went on for a while until no one believed me anymore and thought I was acting to get out of being in class.


My mom and I were in Perry, GA for a horse show in April one year. If you’ve been to Perry you know it’s very southern so I was eating pancakes, biscuits, chicken and dumplings, fried chicken, you get the point. And every single day I would break out in hives but also huge welts- all over my body. And the same stomach ache/pain, doubled over. My mom wrote down everything I was eating. She was Googling symptoms one night and Celiac Disease came up / gluten intolerance.


There was a boy I went to school with who had Celiac and I remember this poor kid peeling off the cheese on pizza Friday’s and only eating that for lunch because the crust of the pizza would make him sick. My mom instantly was like I bet you have what (not saying boys name on here) has. So we went back to Tampa after the show and my mom only gave me sausage and corn that day (we stopped at Carrolls off the highway). I remember walking in the house and my dad saying well her skin isn’t that bad... because I consumed no gluten that day.


The first allergist I went to was like pulling teeth to get him to do blood work on me. He refused multiple times and chalked it up to me being a hormonal teenager and this is just something everyone goes through. He gaslit me into thinking that my hives weren’t actually bad (I wore nothing but hoodies to go to tutoring, at this point I was doing online/homeschooling, but I literally wore hoodies everywhere because my skin was so bad and I was so self-conscious.) He finally gave into my mother and drew blood.


A week later he said “its really no big deal but you have Celiac”... needless to say my mom was pissed and we found a new allergist. The new allergist did more blood work, a skin/patch test and found that I was allergic to all nuts, soy, egg, dairy, watermelon, peas, and mangos. What was I supposed to eat? He suggested I see a Gastroenterologist to make sure my small intestine / gut lining wasn’t impacted.


So I went to him and he wanted me to consume gluten every single day for a week straight until my appointment for a colonoscopy. We left the doctor that day and went to Starbucks with a full shopping day planned in Fort Myers. I had not even five bites of a red velvet muffin and was doubled over and told my mom to take me home, there’s no way I can do this. Put it this way: I was raised Catholic, when I went up to get communion by the time I swallowed it and was back to my seat I was in severe pain and had to leave then or else we’d be stuck at the church for hours upon end because I couldn’t move.


At that point my dad realized that we needed answers and I really wasn’t getting any better- I was constantly sickly looking, loosing hair, pale, and underweight. We booked an appointment at the Mayo Clinic in Minnesota and my mom and I flew there for several days. They were the most thorough doctors I had ever seen and the most knowledgable about Celiac at that time (this is 2014). I had to go in for a colonoscopy & upper endoscopy and they didn’t force me to eat any gluten.


The recovery period was hard on my little 13 year old body but I had something that no other doctor was able to give me: an ear to listen and answers. After that, I saw a nutritionist who developed a meal plan for me weekly and I had to see a therapist as well. My friends were pretty supportive of my new lifestyle change and I never experienced bullying around this topic but hanging out with friends and sleepovers were so hard. My friends were eating so many goodies and I was stuck eating chicken salad 99.9% of the time.


Before I had gone to the Mayo Clinic I developed such a poor relationship with food because everything made me so sick and feel like crap it was sometimes easier to stop eating in general. I remember giving away my lunches my parents would pack me to my friends or throwing it away before the teachers saw and only eating Fritos and fruit.


I was still suffering from constant bloating and GI issues but I was so convinced that I was “healthy” because I was gluten free. All my other symptoms cleared except for GI issues which everyone told me that bloating is normal. It wasn’t until 2020 when I found a chiropractor in Lexington (I was a senior in college) who really dove in deep with me about nutrition.


He asked me what type of birth I was and my vaccine schedule. He showed me his research regarding vaccines in general but also around those who are vaccinated and have food allergies/autoimmune diseases. One day after my appointment I went back in my records and put the pieces together.


Before I was diagnosed with Celiac, when I really began to experience extreme symptoms, I was vaccinated with dTAP. It was really hard coming to terms with the fact that something that was supposed to save my life actually harmed me in so many ways. During the time of my diagnosis my parents had already been separated and were going through a divorce- trauma can trigger symptoms of disease as well.


I worked for a chiropractor in Nashville in 2021 and I learned SO much from him and his wife, about the body, but specifically nutrition. His wife tested me and found several vaccines still lingering in my body along with  heavy metals which reassured my theory about dTAP to begin with. Thats when I began a detox and made a huge lifestyle change to benefit my health.


I’m still learning so many new things daily about our bodies and how they function but this is so common for so many young people and it’s truly heartbreaking. It hurts my heart so much to know there’s children and adults who are still suffering that didn’t have the resources I had for a diagnosis. It breaks my heart that big Pharma has taken so many lives.


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