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My Coeliac journey
I’ve been diagnosed coeliac 9 years ago. I don’t write about it much. Nor I’m posting much about my coeliac journey and how I coped ever since. I’m not sure why. It’s hard, I mean it was very hard road for me. And because I dedicated myself to the Whole Foods eating so much, I now rarely even consider myself as coeliac. I have made peace with my diagnosis long time ago. In past, I put a note on my dream board saying: “I’m not coeliac anymore”, not exactly knowing what it would really look like. Now I know, even though I’m still coeliac I consider myself without restrictions. Today I feel I can eat everything mother earth can produce. I feel free with my meals, and I don’t miss old eating habits. I mean I rarely do. I feel better on the inside than ever before. There is abundance of whole foods I can eat, I never knew about before being diagnosed. Thanks to coeliac disease I am eating nutrient dense foods at every meal and I discovered the whole rainbow of juicy and rich foods I didn’t even dreamt of eating before I was diagnosed. Today I am writing about being coeliac with a lightness, relief and gratitude. This may confuse you, how one can be grateful for such a nasty disease. But without this disease I would have never started my health journey, I would never open my health clinic and help others to discover their path to their wellness and longevity. I’d like to share my story with those of you, who like me, been diagnosed and feel scared, angry and confused. This disease isn’t just a light allergy, its real and it can kill you, kill you fast if you ignore gluten free diet regime.
Here is my full story…
It all began suddenly, without any warning. One day I started to experience massive intestine spasm after my meals. Within few weeks it expanded to night shakes, hot and cold flashes and extreme sweats. My mattress was soaked every night and I had to change my bed sheets and pyjama every few hours. I was terrified. I thought I was dying. Adding to this my relationship was rocked, as my now ex-boyfriend said it’s too much for him to handle, where I’m this poor and negative. I should have dumped him exactly at that point. Anyway, I kept going and sucked it up and stopped expressing any of my feelings just so that I don’t upset him. I didn’t know how to put myself first. I felt so alone. At that time I was also working in a high end London Mayfair restaurant as a manager. Long working hours, lots of stress, lots of anxiety. It was a rat race. My body was strong, at least that’s what I thought. And because I loved my career I was ignoring all the signs my body was telling me, to slow down, to take a break and to look after myself. Those still working in hospitality business, and I am not talking about big CEO’s, but those who work on the restaurant floor, know what pressure, stress and dedication you “have “ to give to survive. You cannot put yourself or your family first. Hospitality business demands giving it all and then little more yet. Sometimes this never ending pursuit can speed up the development of the coeliac.
Coeliac disease is an autoimmune system disease SYMPTOM. I only discovered it about 4 years ago. I had no idea that many factors like my hectic lifestyle could trigger the disease to come out. Many of us, coeliac’ s have more predispositions to have this disease, in a way it’s similar to cancer. We all have it, but not all of us will get ill with it. There is a lot we can do ourselves so this autoimmune diseases, chronic diseases, or cancer can stay sleeping in our bodies all lifelong. The sad thing is that most of us including me, only start to deal with our condition when we get really sick, or have a death sentence in front of us. I wish I knew more about preventative side to common illnesses much earlier in my life, and wish my younger self would listen. By all means I’m not saying we do it all to ourselves, it isn’t this simple. But we do have a lot of power within ourselves to give our bodies’ best chance to stay healthy. Prevention is the key.
So…
The closer to my diagnosis the more pain I had and it started to be unbearable. I was avoiding food at some point, but being hungry was not working either. I was in this state for 8 months. I was going from GP to GP, hoping someone will have an answer. The only diagnosis I was given was the IBS. And despite I most likely suffered with IBS too, this brought no solution at all. There was no medicine, no real guidance except “change your job, take a rest, and stop being stressed”. So my nightmare of being in pain, being weak and anxious, was fast getting out of hand.
I was going home for Christmas and I remember being so poor, weak and pale on my face that I was lying in bed the whole festive time. I ate and then run to the loo minute later, spasm intestine pain appeared, and I realised my body is getting rid of everything eat. Shivering and sweating after meal by then was my norm. I shower every few hours, I was dressed with hat, and covered with every blanket my mum could find because I was so cold yet sweaty and hot at the same time. It was awful. I was crying all the time and I was scared. I refused to go to A&E where there is no hope and no doctors who could really help me. I was waiting for scheduled gastroenterologist visit. But everything was closed during Christmas. The second day of Christmas my parents carried me, as I could not walk without assistance, to the private gastroenterologist clinic. Doctor examined me and said it must be IBS. No diagnosis of coeliac. I felt devastated. But at the last minute my inner voice whispered to me:” tell him” and I did (mind I never read anything about coeliac, or knew anything what is it) “Doctor, maybe its gluten that’s a problem”. This triggered him to think. He told me not to eat any gluten until tests come back. After blood tests and gastroscopy I had my diagnosis. Coeliac disease. At last I knew I wasn’t going crazy, I was ill. My diagnosis took months, by that time I also had internal bleeding. According to my doctor, I was close to dying any few more weeks of gluten most likely would have killed me. He said I’m not allowed to have slightest traces of gluten. That was such a shock to me and I think it made me more paralysed than the diagnosis itself. This is how vital quick diagnosis is. I think doctors are much more sensitive nowadays and more keen to do the blood tests for us. But keep guard over your own health as no one else will.
Once diagnosed I was prescribed plenty of medication and big doses of antibiotics. Knowing what was making me ill was the best feeling. I was in bed for the next three weeks but I started to regain my strength. That was beginning of a rocky road. Being in East of Poland was hard, getting anything gluten free was nearly impossible. I never knew that ham, cereals, pates, cheese, half of the whole grains I usually ate contained gluten. My mum went above and beyond to source gluten free foods for me. We started to research and read every single food label before it would make to our basket.
I returned to London and back to work. Being a breakfast manager, I could say goodbye my tasting sessions and helping with the food quality, which was part of the job and a crucial one. I knew then that I will eventually leave this job even though I loved it. It took me 4 more years. And then I turned to the health sector.
After about a year following my diagnosis I got a GP prescriptions for Juvela breads, buns, flours, crackers, pretzels and cakes. It wasn’t easy to get, and not all GP’s were keen to prescribe those despite they were obliged to. I went to every GP in my practise until I found one keen to give me the repeated prescriptions. Today, to my knowledge, not all GP practises provide this support. But do ask. Last I checked some Juvela and Genius food were still available on prescription.
First three years my diet was like before, but gluten free. I was diagnosed with osteopenia, leaky gut, and IBS. My intestine didn’t absorb much nutrients and blood tests were not bad but they were not great either. I had constant diarrhoea and bloating and I felt that nothing was getting absorbed. This was ongoing for years. The most worrying aspect was my bone density. I was taking calcium tablets for many years, however, they made no difference and now I refuse to take them due to side effects. I didn’t feel that this was the right solution for me. But I didn’t know what else I can do.
After my pregnancy 6 years ago, my inner health went from bad to worse. I could not sustain energy, I was lethargic, anything I ate didn’t stay for long in my tummy and I wasn’t satisfied with any foods. I felt my gut lining was still destroyed and it was impossible to catch some balance. I ate much more meat as it helped me to stay energised for longer. I also kept eating dairy products apparently important for milk production for my baby. But at some point I have developed pain just under my sternum. I had to be careful what I ate so the pain wouldn’t appear. Meat was heavy to digest and I had to slowly minimise it again. My gastroenterologist had no answers for any of my discomfort, problem with eating habits, diet and appearing pain. No suggestions at all. I also started to experience hip pains, and I couldn’t even run for a bus or have a play with my daughter if she’d challenged me “mummy lets run to the tree now”. This apparently is a common symptom for people with osteopenia.
My mood was low, I felt depressed and had no joy in life. GF food options were not so great (even though Juvela products were amazing in comparison to store bought), also I had no strength left, my skeletal system was poor and foods were neither nutritious nor tasty.
This is when my lifestyle change has started. About 4 years ago I started to consider other options. Veganism or other diets seemed extreme and foolish at first. I knew there is another way to be free from being coeliac burden and all the negative effects that come with it. I always said to mu mum that I won’t be coeliac forever! That this disease doesn’t make sense to me and it won’t be my life sentence. And I was right.
Day by day, week by week, I was discovering what people do when they can’t eat gluten. Slowly, google research, documentaries and other research started to direct me to people with similar problems. Not just gluten but also other serious autoimmune system symptoms. I started to buy into the idea of going plant based. But it took me a few months to prepare my mind. And then I started to slowly eliminate some foods. Fish. Meat. Dairy. I had so much fun doing it. I was rewarding myself for being brave and going down this road. It was exiting. I surrounded myself (virtually) with lots of great people and friends, who were a huge inspiration to me.
I started to feel much better. Removing meat and dairy products had the biggest impact on me. Later it turned out I cannot tolerate dairy products, something no GP told me until I mentioned it to them. It is magnificent to trust your own body, at the end of the day you know yourself best. No doctor will tell you more about your body and what is going on with it than you yourself. It’s therefore important to learn and listen to your own gut.
How am I today?
Today I am again readjusting my eating habits as I reached my early 40s. I’m learning what it means for my hormones. I’m now on a new journey with gluten free -plant based lifestyle as I enter my perimenopause. Do I still need to avoid gluten? Sure thing I do. But with learning new eating patterns, changing my lifestyle and discovering a rainbow of whole foods (and there is a lot out there) I am much healthier, happier and much more energetic self I’ve ever been before. And I don’t exactly feel like coeliac anymore!
I want you to know you’re not alone in this. There is at least 1 in 100 people in the UK and Europe affected by coeliac disease. Only 30% of people are clinically diagnosed. It takes about 13 years from the onset for one to be diagnosed. That is a very long time. If you’ve been diagnosed with IBS I’m encouraging you to ask your doctor to run the blood tests to check for coeliac disease too. This can really help to prevent lots of further complications coeliac often experience.
Links to follow and organisations for trusted Coeliac information:
Love Ania xx
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