I was diagnosed with celiac disease at the age of 30, and with I can say that it was one of the happiest days of my life. If you are wondering why, continue reading to get introduced to that quiet, changing, cocooned and above all painful celiac disease!
For as long as I can remember, I have been listening my parents’ stories about how by the age of 7 I didn't have any appetite and the only thing I would eat was fruit. In that period of my life, while running around carelessly with friends I fainted, and in the hospital was diagnosed with epilepsy. I was given antiepileptic drugs to keep the illness under control. I also remember the pain in my lower limbs. The doctor’s explanation was that I grew quickly and that is completely normal. The problem was that the pain was so strong that I couldn’t sleep at night. I was doing a lot of sports and was very active, almost hyperactive. There was not a month during the year when I didn't have aphthae, I was losing my hair, and after childbirth I was experiencing enormous mood swings and lack of concentration.
The biggest problem was the leg pain I was experiencing. In my twenties, I literally begged the doctors to find the cause of the pain and the weakness that I was experiencing daily. The pain was getting stronger, my knees were shaking, I could barely walk up the stairs, even just walking was exhausting. Sometimes I just couldn’t get out of the bed, even if my baby was crying in need of his mother. All the hospitals and medical examinations were not able to determine the nature of my problem. I was told to check with a clinic in USA to improve my health. I decided to stay brave and to believe that I am young enough to get through everything, even that period of my life when I was taking painkillers daily just to get through the day. I also decided to completely ignore the comments of my friends and colleagues that maybe I was suffering from multiple sclerosis.
In the second decade of my life I gave birth to two children, both diagnosed with celiac disease (in infancy). While the genetic testing for celiac disease was non-existent in my country at that time, my husband and I underwent testing for celiac disease specific antibodies to maybe discover celiac disease, but we were both negative. One day we received an invitation for genetic testing which we gladly accepted hoping to find answers to our questions. My results came in positive (presence of HLA DQ2 and DQ8 was established). I repeated the serology, which also came positive at this time, as well as the small intestine biopsy, to round up the whole story.
I immediately started with gluten free diet. The antibodies decreased over the years. The pain started to fade slowly. But only after 5 years of strict and persistent gluten free diet my results came in negative. For so many years I lived my life in pain, got wrong diagnosis, and took wrong therapy. After gluten free diet the pain in my muscles and joints disappeared, along with long and painful menstrual bleeding and aphthae. Finally, I was calm enough to continue my life. My diet consists of groceries which don’t have gluten naturally, and my mission became to raise the quality of life of people suffering from celiac disease!
In the end, I would like to say that celiac disease wasn’t even a possibility in adult population at the end of last and in the start of this century if it wasn’t manifested with clear symptoms: stomach ache, diarrhea, vomiting. Today, I can say that genetic testing contributed a lot to discovering celiac disease in family members and first relatives of the diseased, as well as to a lot of people whose celiac disease was completely asymptomatic. We can’t give up on educating patients and medical staff and raise awareness about celiac disease as a quiet epidemic which carries a lot more diseases and weak states of our organism.
M.M., 43 years