Coeliac disease, hospital stay, apathy, survival, doctors, nurses, family
I want to raise awareness about coeliac disease and the seriousness of this autoimmune condition. I have coeliac disease since I was 16, I am managing the illness with a very strict gluten-free diet. This is my story from symptoms to diagnosis, survival, and the new lifestyle.
What is coeliac disease?
Coeliac disease is an autoimmune disease, a serious illness where the body’s immune system attacks its own tissues when you eat gluten. This causes damage to the lining of the gut and means the body can’t properly absorb nutrients from food. Coeliac disease is not an allergy or food intolerance. Coeliac disease is common and affects one in 100 people. However, only 30% who have the condition have been diagnosed which means there are currently nearly half a million people who have coeliac disease but don’t yet know. If a first-degree family member (such as mother, father, sister, or brother) has the condition then the chances of having it increase to one in ten. It can cause long-term harm to the body if it is untreated, including fertility issues, osteoporosis, ulcerative jejunitis, intestinal malignancy, tumors, functional hyposplenism, vitamin D deficiency, and iron deficiency. (Coeliac.org.uk)
My diagnosis and survival
January 2003; I started to come down with a cold, which turned into a tummy bug, a very nasty one that didn't want to shift. It went on for months on and off; my Hungarian GP prescribed me eight sets of antibiotics, one set per month in the view that we will shift this illness. In May, I went to a residential school with college; I wasn't enjoying any of it; I was lethargic, had multiple mouth ulcers, and my tongue was so painful. Even talking and drinking was painful. So this whole situation went on for another two weeks, and I was just exhausted in the end. I really struggled to go to school, I had palpitation, and my legs didn't want to carry me any longer. One weekend, I was sleeping 20 hours a day; I just couldn't keep awake any longer. A couple of days later, my tummy bug came back, and I became seriously dehydrated. My GP wasn't overly concerned, but my parents were, so we headed to A&E, where the doctor said I have to say in isolation in the infectious disease ward until they run some tests and figure out what is wrong with me. I was pleased that I had some fluids via the IV line; I started to feel a lot better. I was in the isolation ward for about five days; all tests came back clear; the fluids I got made me feel better, so I was discharged.
A day or two later, I woke up and I had this horrible burning sensation in my throat, never had anything like that before. No matter how much water I was drinking, nothing was shifting it. Again, a couple of days before this, I started to sleep 16-20 hours a day, I just couldn't keep my eyes open. I said to my parents; something is not right. I need to go to the hospital; I can't function like this any longer. Another sign, I lost nearly 11 kg in only three months, I was only 35 kg and 150 cm tall at the age of 16. I was worried as the infectious ward was a terrible experience, an old building from the early 1900s, windows that had bars over them. I remember an old lady passing away next door in the night; between the rooms, there were windows which were partially covered. You could hear everything and kind of see things as well. Teenagers and adults weren't separated. I was petrified about going back there again.
As A&E sent me through this time to the children's ward, I met the doctor on duty; she was fantastic. She asked about my symptoms and said they would admit me that night. I was so happy, I knew I was in the right place, the whole experience this time was great. I was on the children's ward, brand new everything, the wall had paintings of cartoon figures, the beds were comfy and the window was looking at the rose garden. It was June, wonderful sight of the red and white roses in the garden.
I got some medication in the IV line, as my throat and oesophagus were damaged and inflamed due to acid reflux, I couldn't drink or eat anymore. The medications did the trick, I felt a lot better after I woke up, but the exhaustion just didn't shift. I had lots of blood works done, I was pricked at least nine times a day for four weeks. I remember 3.5 weeks in and I had no vein where they could put the IV line in. My favourite nurse categorically said I am not taking blood from her anymore, she was crying because she felt so sorry for me. The walls of my veins became very fragile, and they burst the minute the needle went in. The on-duty doctor had to find a viable vein so they can sort the IV line again. No one understood why my blood results are so bad, and I am not responding to any of their treatments. I was losing weight rapidly, I was seriously malnutrition. I remember my brother visiting me after work, he wanted to take me to the rose garden. It was just the end of the corridor, about 50 meters. That 50 meters were the longest 50 meters I had to do, it took me at least 10-15 minutes to walk and I was exhausted after it. I have been tested for all kinds of diseases, had the psychologist trying to talk with me about my eating disorder, which wasn't existing at that point.
By week four, I had a team of doctors figuring out what is happening with me, seven specialists, and the children's ward head practitioner. The last day on the ward was strange, all seven of my doctors had a case conference, they repeated the same blood test four times, the result was the same. I remember my parents were called to the meeting room, and the news was broken to them that they are moving me to the ICU unit, as my body is shutting down. My favourite doctor came in and said I need to go back to my bed as I am moving to ICU now, taking my bed with me.
Majority of the five weeks, I was in apathy; I switched off all feelings because that was the only way to survive the situation in a reasonably good mental state. I was reading my chemistry book, learned a lot about the elements, I trusted science, the only thing I believed in. Science was my escape from reality. This is THE chemistry book, my evening fairytale.
It was a horrible time for my family, seeing me almost slipping away, seeing the doctors' faces, that they can't find the solution and can't fix me. The desperation on my favourite docs' face when she told me I was to go to the ICU, the concern on her face scared me. That was the first time when I felt something, I realised how serious the situation is. Nobody talked to me about what is actually going on, but I resisted going to the ICU until I know why I need to go. This is when the head practitioner came in and said I am at risk, and my body is shutting down. They need to monitor me 24/7 in case I need serious intervention. I was very proud, I walked to the ICU. That is one reason perhaps why the doctors didn't realise how poorly I am. I could do anything like a normal person; I was just drained and was still losing weight. I got to the ICU, my new home for a while in a glass cube, machines everywhere, nurses looking at you 24/7 next to the cube's door. That was the first day I saw my dad cry, never saw him scared before, we said our goodbyes, and I was put on the machines.
I don't remember much of the first couple of days, I had lots of pipes and all sorts on me, got vitamins, proteins directly into my veins, and I think something called albumin. My immune system wasn't working anymore. A few days later, I was transferred back to the children's ward when I was stabilised, and there was a diagnosis. My brother called the main children's hospital in the capital and had a chat with someone about my symptoms. The doctors had another conference call, now including the other hospital. The tests were done for coeliac, which came back positive, confirmed by biopsy.
What a roller coaster, such a simple thing to eliminate from your life can make such a huge difference. I was discharged after 5-6 weeks and was on the road to recovery. The recovery was rocky initially as I was afraid of food; the six weeks in the hospital made me very anxious about food. I had to take many pills to maintain my good blood results and wait for my bowels to recover and absorb food again. Not until recently, I got told the real reasons behind my ICU admission. I was very close to a heart attack as my body was shutting down, and the vascular system was collapsing. I am very happy I didn't know this at the time. I am sure it would have changed my calmness about the situation.
These six weeks of hospitalisation and diagnosis were undoubtedly interesting and challenging, not something I want to repeat. This is a part of my life where I have learned a lot about different things, emotions, family, limits and possibilities, death. I don't think I will ever forget the people who helped me, the night time conversations which the doctors when they couldn't sleep, how learning chemistry became my anchor and helped me through the nastiest days. My parents being by my bedside at all times, the chat with my brother in the rose garden, seeing the beautiful roses, and be in the moment with him. I can't be thankful enough to the work of the doctors and nurses who kept me alive and made my stay as positive as possible. No matter where you are, doctors and nurses, and any hospital staff, you are amazing!
One positive thing came out from this; I became a case study for coeliac patients in Hungary. There were lots of learning takeaways from my diagnosis and treatment for both hospitals. You can almost say I became famous.
I am following a strict gluten-free diet, trying to eliminate any changes for accidents and cross contamination. All is going really well with the diet, there are more and more gluten-free options on the market. Also, there are some awesome bloggers out there, like Becky Excell who is sharing her gluten-free recipes with others.
As I had a very negative experience with the effects of this disease, I have developed a strange relationship with food and more and more I realise that this is something I need to reflect on and deal with, but that is a story for another day.
Coeliac disease can be a very serious illness, resulting in life-changing effects. Please take it seriously, this is not a diet choice when people are gluten-free.
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