My daughter Anna was diagnosed with celiac disease in October 2020, two months before her tenth birthday. I feel desperate, realizing that she has probably suffered from the disease since she was born and that none of the physicians who have seen her in the past ten years, including a fair number of gastroenterologists, could ever identify her health problem. Although the symptoms she had could give the doctors the idea, no one thought of celiac disease.
When I complained to the pediatrician that I didn’t like the look of Anna’s stools, light in colour, sometimes greenish, with mucus and residues of undigested food, she just waved it away. She claimed it was just slow digestion… My daughter’s conspicuous paleness made the doctor check for possible anaemia, but that was all.
Similarly, no one noticed her distended abdomen out even when she was a baby. She had been diagnosed with low muscle tone and Vojta therapy was applied on her, but no one searched for the underlying condition. Even for the pediatric gastroenterologist that we used to see, celiac disease was completely out of focus, even when he examined her stools for presence of pathogens.
Anna often had hiccups as a new-born baby, and then belching and bad breath, especially after she woke up and finally gastroesophageal reflux (GER) was diagnosed when she was nine years old. However, no one investigated whether this problem is due to celiac disease, which often happens.
Celiac disease was identified by chance. We were looking for a new pediatric gastroenterologist and chose the facility at the General University Hospital in Prague, where we got a friendly welcome. Luckily, we were in capable hands of a real expert, Dr. Peter Szitányi, who took the suspicion that Anna might suffer from celiac disease even at the sight of her.
We made an appointment with him as we wanted to confirm the diagnosis of GER because in the summer of 2020 she experienced nausea and vomiting.
Doctor Szitányi referred us for gastroscopy to exclude esophagitis. In addition, he ordered blood tests as well, and these, “unfortunately”, revealed presence of low titre of antibodies against celiac disease (atTG). The diagnosis in that case should only be confirmed by endoscopy. Immediately after histological confirmation of the diagnosis, we put Anna on a strict gluten-free diet, and now we’re trying to arrange with the new situation in our life.
It never crossed my mind that Anna might suffer from this disease, and I refuse to admit that no one would discover that, although it might have happened very easily. I keep thinking why the government has not included celiac disease in the obligatory neonatal screening, which detects a lot of diseases, including some much rarer than this severe autoimmune disease.
I keep thinking why pediatricians who see babies and children at regular preventive follow-ups do not focus on celiac disease more, as they obviously miss hundreds of cases of celiac children, which is sad and alarming, considering how a serious disease it is. For us, the diagnosis was a blessing in disguise but, sadly, a lot of families will not receive the appropriate medical care in time. The authorities should definitely think about how to improve this ugly situation.
Gabriela Bachárová, mother
Litoměřice, Czech Republic, 19th November 2020