Thérèse’s Story – A Real Coeliac Journey
A while ago I received an email from a lady named Thérèse, asking me to share her story with my readers. This is not a common occurrence, but after reading about her journey I really wanted to pass it on to you guys.
We all have our own stories, our own journeys and our very own ways of coping. One of the things that helped me through my first months after diagnosis was reading other people’s experiences and learning that mine weren’t unique. By finding out that other people were going through the very same things, and learning that they did in fact get better, I found a lot of strength. The worst thing about coeliac disease for me was unanswered questions and the fear of never getting better. I knew nobody else who had gone through what I went through, and no one could tell me that it would all work out.
Therese’s story is one that I’m sure many of you can relate to, and I believe it can be of value. I admire Therese’s desire to share and help, and I applaud her for reaching out. Not only does it help to learn from others, it can be therapeutic to share your own story.
To me, the most powerful part of her story is the closing where she shares her final views on life as a coeliac.
I have left Therese’s story entirely in her own words, and I haven’t changed a thing. This is her story:
My name is Therese I am a mother of 2 children (9 and 6 years old), I am 45 years old and have only been diagnosed with celiac disease since my first-born. So I had lived most of my life struggling with my gut, always getting viruses, never feeling confident going out.
When I was pregnant with our first child I would eat EVERYTHING, well that is what I was told; you are eating for 2. When he was born I was excited, but I just felt like crap. I had a c-section so could not move etc, he also had sleep apnea and stopped breathing on me when he was only a few days old, so I was such a nervous wreck. Getting him home I struggled, I was so sick, extremely tired.
He was about 1 when I collapsed. The doctor at that time did not know what it was. She put it down to being a new mum. I was in bed most of the year. When I finally went to my mum’s doctor, she chipped away and I had numerous tests (felt like a guinea pig). Here I was juggling a new child, we had our own business, my husband would not go to work as he knew I could not cope. So, after many tests they discovered I was “a little bit celiac”. As you all know, we are either diagnosed with Celiac or not, so I was 100% celiac.
I was grateful that I finally had a diagnoses, that was step 1 of many, many steps. Our son at this time was over 1 and being spoon fed; wow, I could not even put some of his food in my mouth, -those little things that other people can do. I could not finish his meals or share the same meals as him. In the early stages I would take little bites of his gluten food, as the cravings would get the better of me. After a year or so my taste buds had adjusted, and the gluten food now tasted like cardboard. My emotions were mixed, something I used to love was now gone, wow from then on (nearly 9 years ago), I have kept a strict GF diet. I am tempted to have a bite of a meat pie (here in Australia that is what you have at a sporting event), I know it will not taste the same, and I will have the consequences.
I cannot believe I hear stories of people who have been medically diagnosed, like me, with Celiac disease, still have beer, meat pies, pasta etc…I shake my head and think okay a little nibble but not the whole thing! What is it doing to your gut!!, your health?
When I was pregnant with our daughter, wow what a difference, not as bloated or sick. Afterwards I felt so so much better, and I had our son who was 3 and I had the energy for both of them, comparing to when our son was born I had NONE.
Our daughter who is now 6 has been tested as she was quite sick when she was born, so far none of our children have this and I have met many children who are their age with the disease and I feel for them. I felt sorry for me, but at least I was older and could accept it a lot more, where children are off having birthday parties and have to watch what they are eating, where they should be eating everything.
Going back I remember when ordering a coffee and looking for something GF to have with it, and the shop assistant said and I quote “Oh this GF thing is just a FAD, I am so sick of people being GF, so yuppie”…… my response as you can imagine “Excuse me! I did not put my hand up to have this disease, and I did not choose to have this disease, I have it and it is hard”… she was then totally sympathetic. The first few years after being diagnosed was very emotional, family would fuss or get it totally wrong (they still do). I used to cry but now it is “whatever, you don’t have GF” -I won’t eat or I would bring my own just in case.
If you have just been diagnosed I will tell you it is hard, but if I can get through the last 9 years on a strict GF diet anyone can. The hardest meal of the day is lunch. Snacking through the day on nuts, dates, sultanas, fruit etc helps me a lot.
I have been diagnosed with Thyroid, hiatus hernia, another intestinal disease and a form of arthritis (not life threatening). I was like; GREAT have kids and fall apart. In the beginning I had dark days, where I just would not get out of bed, I have an amazing husband who totally supports me and understands.
Today, I have a lot more energy, loving my gluten free diet. I get checkups regularly and so far so good.
I LOVE BEING CELIAC….I wanted to share this with you, as I had nothing in the beginning to read about when I was going through it, I would have loved to have heard that someone else was going through it (not being mean but knowing I was not alone when I felt completely isolated) the same way. I have come out the other end, and to tell you the truth; some days I didn’t feel I would.
– Mum, Wife, loving life…”
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