Part 1: The beginning of a positive lifestyle change

“I was assigned this mountain to show others it can be moved.”

This is a progression of photos of me over the years. 2013: I was 24 in this photo and just a few months away from graduating from a very intense program at school, probably around 120-130lbs, pale, blackened eyes, stressed and thin hair. 2016: 27 years old, 155lbs and 3 months into what I did not know was an autoimmune response in my body. 2018: exactly one year after diagnosis, healthy and looking better then I have in years and feeling fantastic.

Just over two years ago, at the age of 27, I was diagnosed with Celiac Disease through a blood test. Six months before that I became extremely ill after a trauma from an accidental hit to the face with a hockey stick. Don’t get me wrong, now that I know about this, I realize I actually have had symptoms my whole life but just thought of them as my “normal.” 

Growing up I remember having frequent ear infection after ear infection and I do remember a lot of arguments over taking this artificial banana tasting medicine, which really wasn’t the best. As a fun fact, I have now been informed that repetitive ear infections in a kid can be a sign of a food allergy or intolerance. Now keep in mind, it is not always associated with food allergies and can be due to a virus or bacteria and can be a serious medical condition that needs to be looked at right away as it can lead to hearing loss or the infection spreading.

Along with ear infections, I had knee pain and other joint pain, seemed to get the stomach flu quite a bit, when I was 17 I had my first go at gastritis (which I now realize this may have been an autoimmune flare up because I also had another trauma; to my knee this time; and it occurred around the first time I had gastritis) and again another time 5 years later in the Dominican Republic (May 2012). I could never seem to get my iron up no matter how much red meat and iron supplements I took (this was before I realized you could get iron from vegetables and fruit as well) and I was always anemic (I now realize this was most likely due to malabsorption in my small intestine). 

Want to know something super ironic? I worked in a bakery for 7 years, yup, a full on gluten infested, flour in the air, bakery. This is when I really started getting symptoms; shocking, I know. 

This is my hand recently with Dermatitis Herpetiformis.

Symptoms such as: shortness of breath, anxiety, menstrual problems (infrequent, heavy, light, painful, PMS, etc), clustered blistering bubbles all over my hands (Dermatitis herpetiformis), hair falling out, nails always breaking and nail beds always peeling, painful acne spots on my face and buttocks, red bumps on my upper arms, mouth ulcers, stomach sickness, difficulty concentrating and I was ALWAYS hungry; I literally could out eat all of my friends in school. It was very difficult for me to gain any weight, I remember my family doctor telling me I needed to be around 140lbs for my height and I was always around 115-120lbs (I’m not complaining and I was really active but it was just weird eating as much as I did and not gaining any weight). My hair dresser always pointed out to me that I was loosing a lot of hair at my appointments and mentioned a handful of times that I had psoriasis on my scalp. I do remember having flaky chunks of skin come off my scalp in my finger nails when I would scratch my head.

Jan 2017, just a few days after diagnosis (super inflamed gut), to Feb 2017, just one month after. The difference after one month of being gluten free was huge. Also, take note of how messy my room was, this just goes to show how awful my mental state was at the time. I had no motivation and just did not care.

Before the trauma occurred, I was sluggish, gaining weight (I was around 150-155lbs, which could have been muscle), unmotivated, bloated, my hair was thin, and I was tired. After the hockey stick trauma in 2016, I did not know what was going on with me, I became very mentally and physically ill. It started with really low energy which I thought was from lack of sleep because my sleep pattern went from sleeping well to falling asleep fine but waking up all night. I had maybe 2-3 hours of sleep a night, which resulted in me nodding off in the middle of the day. Concentration and thinking was a struggle, my brain was in a fog all day and everyday. I started to experience becoming sick with the common cold at least once a month, which turned into a sinus infection which I was put on one dose of antibiotics for and soon after got my first ever yeast infection. PMS was HORRIBLE, I had headaches that later turned into migraines, cramps, bloating, and nausea. I had the Dermatitis herpetiformis (DH) rash on my hands blistered and cracked open with sores all over my fingers. I had a mental hit as I was depressed and mentally fatigued, quite literally crying 2-5 times a day over what seemed like nothing.

The last month before I finally went to get help (6 months after the trauma), I had migraines which I have never had before in my life, really sharp pains in my gut, and what got me going to see a doctor was my mouth bleeding every time I brushed my teeth and huge bleeding oral cankers as I know this can be a sign of malnutrition.

The stubborn human I am, it took me 6 months of being sick to finally consult a doctor. The first doctor I saw told me to go back on birth control…yup. Talk about negligence, keeping in mind he was a walk in doctor that was extremely tired but that is absolutely no excuse. Knowing what I do now, he let me walk out of his office after less then 5 minutes of talking, close to being hospitalized. Thankfully I knew better and threw out the prescription paper as I was leaving the office and the next day I went to another walk in and met the incredible doctor that I now proudly call my family doctor. She spent what felt like 30-40 minutes with me and listened to my entire story and all of my symptoms for the last 6 months. Palpated my abdomen and sent me on my way for a blood test looking into multiple conditions.

Fifteen minutes after this appointment (about 3pm), I was in another building having my blood taken. This is when I really knew something was wrong as they were having trouble finding my veins and getting blood from them. The nurses had to go to both arms to try and get enough blood for the tests.

9am sharp the next morning, when the walk in clinic opened, I received a phone call telling me my blood results have come back and I needed to go in to speak to a doctor immediately. This of course, got my heart racing. Getting my blood results back this quickly had me thinking I had a serious health condition. The doctor sat down and told me I had Celiac Disease and I was extremely anemic. To test for celiac disease they test for a tTG result in the blood (IgA antibody level) and this level should be less then 12. Mine was over 300, and the iron/ferritin level was 3.4 when it should be between 40-200. 

I left that doctors office surprisingly relieved and felt as though the bag of bricks I was carrying around had been lifted off my shoulders. I went home and immediately spent hours researching celiac disease and the more I read, the more my life made sense.

If you are in a position of not feeling well, or knowing something is just not right, do not give up – your answer is around the corner.

Next week will be Part 2 of my story, three years after diagnosis.

With love, be kind to yourself,

LEW xxx

Please Keep This Disclaimer in Mind:

This article is for educational purposes only and is not intended to diagnose, treat, cure or prevent diseases. We cannot provide medical advice or specific advice on products related to treatments of a disease or illness. You must consult with your professional health care provider before starting any diet changes, exercise or supplementation program, and before taking, varying the dosage of or ceasing to take any medication.

2 thoughts on “Part 1: The beginning of a positive lifestyle change

  1. Pingback: Part 3: My first accidental exposure to gluten that lead to a gastroscopy | LEW's Life

  2. Pingback: 5 Things I Wish I Knew When I Was Diagnosed With Celiac Disease | LEW's Life

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