My celiac journey

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I began having symptoms in 2011. It took me 2 years, 28 doctors and 4 stays in the ICU to properly diagnose me. I am considered one of the lucky ones for diagnosis.

My first symptom was tooth decay. I never had an teeth issues, then within a few months, I ended up having 3 root canals. My next seemingly unrelated symptom was vertigo. The doctors said I was too young to have it and didn't know why. Then I just kept getting sicker and sicker and no one could figure it out. I started loosing my hair, my skin looked grey, I had paralysis on the left side of my face and semi paralysis in my left arm and legs. The headaches began, chest pains, acid reflux, gas. I stopped menstruating, developed ovarian cysts. I used to have a photographic memory then the memory loss and brain fog appeared. That was quite devastating to me as it was part of my identity. It was what made me successful. Things that were once easy for me, became a struggle and it was frustrating. My left leg began swelling up like a balloon. Vomiting, swollen glands, night sweats, rapid heartbeat, joint pain, nerve pain, bone pain, malnutrition, you name it, I had it....except I really never had any stomach issues. No diahhrea, no bloating, no cramping, etc.

The doctors tested me over and over for everything. Heart attack. Brain Tumor. Blood clots. Lou Gehrig's Disease (ALS). Stroke. Thyroid Cancer. Multiple Schlerosis. And every time the tests came back negative. I was in my 40s, had never been in the hospital before, never had a procedure done before, had never been under anesthesia before and they could not figure out what was wrong with me and I thought I was dying. I was scared.

Then I developed dermatitis herpetiformis. Over the course of just a few days, I was covered from neck to ankle with this skin rash. I researched my symptoms and determined it was either bed bugs, lepracy or celiac disease. The next morning I called a dermatologist and she had me immediately come into her office and I was tentatively diagnosed that day August 2013 with celiac disease following a blood test and biopsy.

From that day on I have never purposefully digested gluten. But the road to recovery was not so easy. I had to take a leave of absence and move into my parents house for 3 months to help aid in my recovery. The detox was quite painful. I became constipated and bloated which turned out to be a dairy issue. I was bed ridden for weeks while my body healed. I educated myself on a healthy celiac diet and where gluten resides and can be hidden and I am still learning.

Subsequently I have been diagnosed with Hashimoto's disease and eczema. Currently I have 8 autoimmune diseases and  related conditions that I use the acronym CHEDDER: Celiac, Hashimoto's, Eczema, Diabetes (T1D), DH, Endometriosis, Rheumatoid Arthritis, and Restless Leg Syndrome.

I try to maintain a natural whole foods diet avoiding gluten, dairy and soy. Mostly I am on a vegetarian diet when eating at home, but I will eat meat, fish and poultry when at family or friends homes or at a restaurant. I have also found that I feel better if I eat grass fed beef instead of grain fed beef. I don't drink caffeine and not much alcohol or sugar since I am already diabetic. I have figured out how to manuveur through my dietary restrictions and have settled into my new eating habits.

Today, I have my energy back and regained my active lifestyle. I enjoy solo traveling and since my diagnosis in 2013 I have traveled through 4 continents and 19 countries either solo or with friends all while maintaining a gluten free diet and have only gotten sick once in Bulgaria, by a salad of course. I travel with my own food as necessary which was useful in Tibet and have adapted nicely. I still enjoy going out to dinner with friends and family and have surrounded myself with people who support me and my new lifestyle. The best part now is I get to pick the restaurant. LOL