My coeliac story

Two of my kids are celiac

"Unfortunately, we have had to face this diagnosis—celiac disease—and it is even harder to live with it in our country, Ukraine, which is uneducated and unprepared. Only thanks to the efforts of a group of concerned individuals who united into an association has there been any movement on this issue at all in our country.

Just a month ago, both of my children—a girl aged 8 and a boy aged 4—were diagnosed. I, their mother, have negative antibodies, but we parents have not yet undergone genetic testing. The disease was asymptomatic in both children, and we likely would have missed it and continued living unaware for many more years, if not for one doctor—a dermatologist we saw about a perioral rash on our son—who, for some reason, decided to refer us for tests. After that, everything began to unfold one step at a time.

Among the less obvious symptoms: our daughter had poor growth. I had stopped searching for a reason after several failed attempts—an endocrinologist had seen no problems—so we just carried on. The diagnosis came as a shock and a double blow to our family. After the difficult process of accepting it, we now face recurring phases of “non-acceptance”—every time we go to a shop and see that everything is off-limits, everything contains traces of gluten; every time we’re reminded that our children are restricted and not like others.

It’s especially hard when you realise that, here in the heart of Europe, in the capital city, there isn’t a single restaurant or café where you can get a gluten-free meal. There are very few gluten-free products in shops, and those that do exist are often stored together with gluten-containing items, without any consideration for cleanliness or contamination. For our producers, it seems meaningless to write "gluten-free" on the packaging—it essentially means nothing other than that there is no visible gluten. Traces, gluten-containing ingredients, and cross-contamination in production are simply ignored.

When you ask in a restaurant about gluten traces, you’re looked at as if you’re crazy. It’s all very sad and upsetting—to have to fight every day for your rights, to constantly explain yourself. We are also very worried about the risk of related diseases."

Kateryna

Note: We do not publish photographs of minors out of respect for their privacy. For this reason, we use illustrations instead.