Hi, my name is Angela and I am 27 years old, the mother of a very active six-year-old, and I have celiac disease. The story of my illness is a long, complicated, and an ongoing tale that has followed me since birth, and that I struggle with daily.
I am the child of a sufferer of Celiac Disease, a diagnosis that my mother and the Mayo Clinic were unaware of until my own diagnosis came to light in April 2005. At birth, I suffered from a mild form of a neural-tube defect and, as a young child, I was diagnosed with anemia. Due to growing up poor in rural West Virginia, it was never properly treated.
I remained thin and pale throughout childhood but ate anything I could get my hands on. I always felt that I could never get enough to eat, and often suffered through nauseating dizzy spells when my meals were too far apart.
As I grew up, my menstrual cycles were very irregular and sporadic. I started to develop reoccurring migraine headaches and became increasingly depressed. I began to have nighttime leg spasms that would wake me up from a sound sleep screaming and crying out in pain. I was told that I needed to eat more bananas and that growing pains were all a normal part of growing up.
Throughout my adolescence, I had reoccurring bladder infections, respiratory problems, painful arthritis and developed a multitude of what the doctors called fibrous nodules. I had also begun to feel extremely fatigued. The nighttime leg spasms persisted but, by age 16, they had started to infiltrate into my daytime routine. I would have dizzy spells periodically and, once when I was 18, I went to the ER after almost blacking out while driving. I also developed what I referred to as my morning sickness, a severe urge to vomit at around 5:00 a.m. daily. By this time, my friends and family had already labeled me as a hypochondriac.
At the age of 20, my menstrual cycles were still sporadic and unpredictable and I was surprised to learn during a routine trip to my doctor that I was 7-1/2 months pregnant. I had gained relatively little weight and had no amniotic fluid within my placenta.
My son was born prematurely by an induced labor that my doctor insisted upon due to high blood pressure and high risk of a stroke. My son was relatively healthy at birth but has since been diagnosed with ADHD, autism, asthma and Tourettes. So far, he has tested negative for Celiac Disease.
Caring for him during his first 5-1/2 years was a nightmare. I had started college, was working full-time, and was becoming increasingly sick by the day. I thought that my extreme fatigue was caused by caring for a new baby. I sought advice from my doctor and I begged him for a blood panel. The results showed the presence of anti-nucleic antibodies and a high rheumatoid factor. This would be the beginning of an expensive medical run-around that would leave me seeking advice from anyone who had two-cents worth of it.
My muscle spasms were getting worse, involving all of my limbs and an inability to turn my head. I was also starting to have trouble walking. The pain in my legs was almost unbearable and I found that if I stood for any short amount of time that they would turn purple and painfully tingle. I had gone three or four times to get tested for blood clots, all of which turned out to be negative.
I was ready to give up. The stress and costs of the medical tests, blood work, doctor visits, and the illness itself, was really starting to get to me. I convinced myself to go see a third rheumatologist. I toted along a three-page typed list of my family history, my current diagnoses, my blood work results, and a list of my symptoms. The doctor studied it for a few minutes, looked to me and said, “I think I know what is wrong”. Two weeks and one blood test later, it was confirmed, I had celiac disease.
I cannot even begin to express the burden that has been lifted from my shoulders and the sense of normalcy that I feel once again as a young adult. Switching to a gluten-free diet and learning about celiac disease has saved my life and the life of my mother. I try to learn more about it every day and advocate for awareness of this deadly disease. At 26, no young person should be left to feel as if the time has come to set the finalities of life in order.
Does this story sound similar to your or a family members? You might have celiac disease. Find out now, take our celiac disease symptoms checklist.