CELIAC DISEASE – Interview with Nataša Forstner Holešek
For me, the diagnosis was almost like a blessing. I used to have serious health problems, with two small children I was completely out of energy...

Nataša Forstner Holešek is a nutrition technologist, an expert in gluten-free nutrition and nutrition in autoimmune diseases. As a volunteer, she has been participating in the Slovenian Society for Celiac Disease for several years. Eleven years ago, she was also diagnosed with celiac disease. As she says, it was almost a real blessing for her at the time …

For your diagnosis, you say you saw it as a new beginning. Can you explain? 

For me, the diagnosis was almost like a blessing. I used to have serious health problems, with two small children I was completely out of energy, I was waking up tired. Sometimes I felt almost like a hypochondriac because I hadn’t received any answers from doctors for my condition for more than 15 years. After being diagnosed, I was relieved as I finally learned what was the cause of my problems and how I needed to take action to improve my health. I had been on a number of examinations before and only on my seventh gastroscopy were small intestine samples taken from me. The same day I was diagnosed, I started a gluten-free diet. After one week, I already had a lot more energy, after three weeks the skin on my leg, where there used to be rashes typical of celiac disease, cleared up, and after three months I also noticed a big difference in hair growth. I knew I was finally on the right track. Everything I teach others today, I have tried myself. Celiac disease has led me to a completely different way of eating, healthier, without processed foods, and at the same time to the beginning of my mission.

Whom do you most often advise about a gluten-free diet? Are these families with young children, perhaps patients who have just been diagnosed with celiac disease? 

I am most often sought out by patients who have just been diagnosed, as they feel distressed and have a lot of unanswered questions. I also do a lot of conversations and counsellings with parents who have children with celiac disease. During quarantine, I gave a lot of advice to patients from abroad, and patients from Slovenia are also slowly getting used to the possibility of online counselling on a changed diet in autoimmune diseases.

What is the difference between celiac disease, gluten allergy and gluten intolerance?

Celiac disease is an autoimmune, chronic, systemic disease in which the body does not digest the protein gluten and it responds immediately to its presence. As the disease is autoimmune, antibodies, that damage the body and cause inflammation in it, are triggered. That the disease is systemic, however, means that due to poor absorption of nutrients in the small intestine, which is the most damaged organ, it consequently affects all organ systems. The label chronic indicates that it will accompany us all our lives. If celiac disease is not treated, the body cannot absorb vitamins, minerals, proteins and fats. The only cure for celiac disease is a strict gluten-free diet.

Gluten allergy is a different type of disease. In this case, the body reacts with an allergic reaction to a certain substance to which we are allergic. Much like a pollen allergy, it can also go away. An allergy triggers the substance histamine in the body, which causes an allergic reaction.

Gluten intolerance diagnostics is not yet well-developed. The symptoms are similar to celiac disease. If we exclude celiac disease and allergy, and with a gluten-free diet the condition improves, we can confirm gluten intolerance. All three diagnoses require a gluten-free diet for a healthy life. Let me point out that it is very important to get tested by a doctor before trying a gluten-free diet. Otherwise, the results may be false negative and the patient may find himself in a vicious circle, and making the diagnosis is made much more difficult and with a time lag.

What is the role of physicians in making the diagnosis? Not much is known about this disease, but it can manifest through a variety of symptoms.

When making the diagnosis, it is important for the doctor to carefully and clearly explain to the patient that a gluten-free diet is the only solution. Myself, I have a case in my family where my father was diagnosed with celiac disease, and after visiting the doctor he continued not taking it seriously. We also notice in the society that there are many who do not follow the prescribed diet and risk their health in the long run. When we are diagnosed with an autoimmune disease, we are much more susceptible to contract another one. Celiac disease is often accompanied by other autoimmune diseases, most often a decrease in thyroid function or hashimoto and type 2 diabetes.

What information do patients with celiac disease need most?

Knowledge of how to buy food properly is very important. We educate patients in the society and remind them of what they need to pay the most attention to. We organize shopping trainings where we teach groups of 10 to 12 people in the store how to read the declaration and which foods are suitable for a gluten-free diet. It is also important how you bake the bread that it is not hard as a rock. Because there is no gluten in it, the flexibility and structure of the dough are slightly different.

The next frequently asked question is where a patient with celiac disease can eat safely outside their home. I use the word safely because eating gluten is a poison for such a patient. Eating outside the home is a burning problem in Slovenia. How to get food that is 100% gluten free? This is especially important for adolescents who do not want to be exposed among friends in terms of illness, difference. Therefore, they also transgress and endanger their health. In Austria, for example, the American fast food chain McDonald’s has included certain gluten-free products in its offer.

How do you comment on the differences in the prices of gluten-free food, which is several times higher compared to the prices of ordinary foods? Can you still eat a varied diet?

Food is too expensive in Slovenia, which is sad, and we are constantly drawing the attention to this in the society. We often go to Italy, where food is significantly cheaper. We have already written to the Ombudsman on this topic, and several times to the Ministry of Health. We got the answer that instead of gluten-free bread, we can eat potatoes, which are also gluten-free. Awareness-raising and attention-drawing of excessive prices is a long-distance race for us in the society.

What does a day look like if you transgress and eat some gluten? How much gluten do you think is already harmful? 

It should be noted that not all patients have the same reaction. Myself,I have an acute reaction, which means that after about 30 minutes I sense that I have ingested gluten. My joints harden, I become very tired, and at the same time my immune system weakens. A meal with a pinch of gluten for me means two days of nausea, lying down, and about three months of feeling unwell. A celiac patient is allowed to consume 20 milligrams of gluten per kilogram of food. To make it easier to imagine, half a grain of wheat is more than 20 milligrams. So, if a grain of wheat fell into a kilogram of gluten-free flour from cereals that do not contain gluten (buckwheat, rice, corn, quinoa, which are grown in separate fields and ground in separate mills), it is already too much. A gluten-free diet should be strictly adhered to. If you transgress it once a week it is almost the same as eating gluten all the time. Experts say it is similar as if you were not on a diet at all.

How has celiac disease affected your family? How do other family members eat? Or maybe they also eat gluten-free food?

First, I completely cleaned the kitchen. I threw wooden cookers and cutting boards in the rubbish and replaced them with new plastic ones and labelled those for a gluten-free diet. I have the kitchen organized so that other family members have a nook where they have the usual cookies, toast and their own toaster. All other cabinets and surfaces are gluten free.

My family understands what a gluten-free diet means for which I am immensely grateful. They are very consistent and are careful with butter and jam that it does not become contaminated with gluten, that we do not use the same knife or spoon… We cook gluten-free food, with the difference that others eat their bread and I eat gluten-free bread.

Finally, can you confide us with an example of a menu for breakfast, lunch and dinner? For breakfast, I usually have eggs prepared in different ways or mackerel in olive oil and lots of fresh vegetables. This is usually baby spinach, lettuce, rocket or lamb’s lettuce, but I always add a sprig of parsley. In the garden, which in my case is a balcony, I grow a lot of lettuce, which is never missing in our home. For lunch, I eat a lot of vegetables and meat, and for dinner I make millet or buckwheat porridge with dates or goji berries, with chia seeds or raspberries.

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