An Introduction

My name is Ashlee. I live in Victoria, Australia and I was diagnosed as a coeliac in 1998 at the age of six; back when there was very little in the ways of knowledge or acceptance about gluten. I also love chilli, I’ve always loved chilli. Shortly after I turned eighteen I met another chilli head; we hit it off, got our own place and started growing our own chillis, collecting hot sauce and trying every chilli challenge (he tries them all, I only do the gluten free ones) that we stumble across.

The post below contains the story of my diagnoses of and living with Coeliacs; please feel free to read.

                                                                                                                                                                                                                      

My mother had been recently diagnosed and as I had always exhibited the same symptoms, the specialist recommended I be tested as well; as I was only a child they suggested that I have the skin test rather than the intrusive bowl biopsy (which I had later on in life).

My parents divorced before my first birthday; as a child and with my mother I had never eaten many foods that contained gluten. She always likes to tell the story about the little girl who at childrens’ parties wouldn’t touch the lollies or party pies and instead would visit the grown ups food table and grab a carrot stick to put in the dip or ate the entire salad bowl by herself. When I was living with my father however the circumstances were far different; crackers with cheese and vegemite, two minute noodles and other instant meals littered my diet. This naturally caused a lot of discomfort which I thankfully don’t remember.

I also don’t remember much about the trips to the specialist; what I do remember being told that I had to gorge myself on gluten filled products in order to receive the best test results.

I was pretty lucky, or at least I thought so before I finished consuming all the gluten laden food in my path- to be tested right around the time of Halloween. Here in Melbourne there is a Halloween show at the Caulfield racecourse. I have vague memories of dashing around with my show bag collecting candies of all sorts; things that I had never seen before.

The most vivid memory however were the mouth ulcers that accompanied those foods, the vomiting and diarrhea. The stomach cramps that were so horrendous that I was crippled in bed with pain and sleeping for nearly a straight day. The final straw was the rash that broke out over my entire back, arms, legs and face.

Even in my memories I remember it as bad, I can’t imagine how hard it was for my mum to watch on. When we went back to the specialist they tried to tell my mother it was ‘old’ dermatitis herpetiformis; despite the rash having only appeared in the last two days. The specialist begrudgingly took the skin sample and I was diagnosed.

That was it. I would never taste a four and twenty meat pie, never eat a caramel slice or an éclair. As it was recently put by a waiter at theatre restaurant I was ‘allergic to life’ before my life had already begun. I do enjoy this reference because that is how it feels sometimes.

 Personally I think that it is better that I was diagnosed early. I don’t remember the taste of ‘normal’ bread, I don’t remember the taste of wheat pasta; I’ve never had a ‘normal’ éclair so to me the gluten free options taste incredible, not as my boyfriend likes to put it like ‘cardboard’.

Being diagnosed so young had some drastic disadvantages. I remember my mum telling me about one time that my prep teacher called her in to school and said that she thought there was something wrong with me. When my mother asked why, her response was “when I tell the children to go and get their sandwiches she doesn’t move. I understand this is because she doesn’t have a sandwich, she has baked chicken breast and salad. By not providing her with a sandwich you are making her different from the other children”

That observation from Mrs. Iris resonated through nearly all aspects of my childhood. At parties I would never eat as I had already eaten before hand. The parents would whisper and make comments about how rude we were to reject their food, as if we thought we were better than them. The kids would partake in games including lollies or food and I would politely decline the lolly bag at the end of the day. As a whole primary school was not the worst. I had very few friends, some would pick on me due to what I ate, the fact that I liked reading, the fact that I was a teachers pet and I was also overweight.

As I moved into my teenage years and high school it got harder. I won’t drag on about every instance that was affected by my Coeliacs but I will mention a few.

Cooking Class

I loved to cook and still do, I definitely wanted to take cooking as a class in early highschool, however I dropped it after the first year due to the very few options I had.

Option One:  I could bring my own ingredients in but still have to pay the fees as if the school was supplying the ingredients.

Option Two: I either had to pay extra fees (I don’t remember them at the moment but they were astronomical) so that the school could supply me with gluten free ingredients, but I still had to be at the same work bench and use the same contaminated equipment as my cooking partner (equipment was shared between two students).

Option Three: I could cook with the normal ingredients and not eat any of the food that I cooked while the others enjoyed their results.

For the first year I took cooking, I opted for option three. My mother was a single parent and we couldn’t afford the extra costs associated with the first two options.

Dating

Despite not being the most popular girl, I managed to get a few boyfriends (nothing serious) during high school. Back then the boys wanted to surprise the girls by getting them gifts, having their parents take them and their dates out to restaurants. The awkwardness of sitting their reading a menu and finding out you could only have a salad or having to ruin the surprise by asking where we were going before hand to ensure you could eat.

Going out on school field trips, or just in general

I remember one Italian compulsory field trip to La Porchetta which was up the road from our school. It was compulsory so I couldn’t not attend, (we had to write a report on the food in Italian once we returned to class) The school had paid for standard pizzas to come out for everyone to share. I sat hungrily as the students around me devoured; despite my mother discussing the reasons I couldn’t eat the food they had not provided me with a gluten free option.

Even going out with friends and having to ask the waiter or waitress a million questions to which most of the time they didn’t know the answer to. In fact I stopped going out after a little while or just ate salads. Some of the questions I have often had include; why are you so large when all you ever eat are salads, or you don’t have to have a salad, I’ve got enough money for you to have something else or girls they always just eat salads, it’d be nice to meet a girl who eats real food. The waiters and waitresses have also prevented me from going out in the past; I’ve had a restaurant owner call Coeliacs a made up all in my head allergy, waitresses who have rolled their eyes at me as I’ve asked them questions, or the mumbled under the breath picky bitch. As the gluten free trend diet has developed in the world I now get the “oh you’re one of those” referring to the ‘hipster’ trend rather than considering that it is a serious disease. I have ended up with very strong social anxiety and hate asking questions anymore. I usually eat at places that have listed Gluten free options, with my boyfriend who is much more outspoken than I or somewhere that I know I’ve eaten safely at before.

Shortly after my 21^st birthday I began having further internal complications; while under going the internal procedure to find out what was happening I asked them to do an intestinal biopsy to confirm that I had coeliacs. I ate for a three days straight all the foods that I was warned not to eat, it had been so long since I had actively had gluten that I forgot why I wasn't eating it in the first place. After the first day I remembered why, I couldn't get off the couch. I had a bucket permenantly attached to my hip and was forced to sleep on the couch due to it's proximity to the toilet. I had chills and hot flashes. I got my results back, unsurprisingly they were positive for coeliacs.

This blog is a lifeline, somewhere that I can divulge feelings, problems, products and restaurants/cafes surrounding coeliacs. This is my blog with my own personal opinion, experiences and tastes. Be aware that I am extremely sensitive to cross contamination and any ingestion of gluten, I will not eat glucose syrup derived from wheat (despite the coeliac society acceptance) I will also not eat gluten safe wheat starch.

 If I mention that a product is not gluten free and you are not as highly sensitive as myself you may be able to consume it, however please do so at your own risk.

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Ashlee xx