Just for today, this coeliac will vent.

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Today I ate a bit of bread. Normal wheat filled bread. 

 

And it wasn’t my fault.

 

I do not dine out often because I just do not trust people to prepare my food. I am a control freak when it comes to the diligent preparation of my gluten free food. There are only a few restaurants that I trust and I mostly dine in the same places. 

 

Today, I was invited out for lunch. The host and other guests graciously let me select a restaurant to suit my needs. I chose a restaurant that I have been to countless times and from which I have never left disappointed (or ill). The chef is a coeliac himself, so knows about cross contamination issues and hidden gluten.

 

But today, I ate bread in the form of a crust on my lamb cutlets that I have ordered so many times before. They are usually made either without a crust, or a gluten free crust is made for my cutlets. For some reason the waiter forgot to note down that my order was to be gluten free despite my repeating it several times. When my dish was served to me, I confirmed with the waitress that it was indeed gluten free and she said ”of course”. I took a few bites of the meat and the bread coating tasted too fluffy to be gluten free bread. I called the owner and voilà… it was not gluten free at all.

 

Although I admire their outlook, I am not one of those people who state that coeliac disease is the best thing that ever happened to them because they now eat healthier. I could have eaten a healthier diet even if I was not coeliac. If anything, I am eating more crappy foods now than before I was diagnosed, although I try not to. Neither do I feel that coeliac disease has ruined my life. After all, with my diagnosis came a new found health by following the gluten free diet obsessively. And I know that there are much worse ailments to be bestowed with.

 

But today, I feel angry, regretful and mostly sad.  

 

Why do I have coeliac disease? Why do I have to worry and plan ahead every time I go out? Why can’t I completely trust anybody to prepare my food?

 

Why can’t I just be ”normal”?

 

Right now, I only have a dull ache in my tummy but I am afraid of what is to come. People can only understand this fear if they suffer from the same problem, or if they live with a person who has coeliac disease. Eating gluten does not mean a trip or a few trips to the loo for us. It means that we are damaging our bodies, and the after effects can be devastating. For some of us it means that we literally lose function for hours or days. It means that we have failed or have been failed, even if just for once. It means that no matter how careful we are, we can never be sure that we will not feel the horrible and familiar sensation of getting gluten in our system, because we can never be fully in control.

 

Today was a harsh reminder of that for me.

 

 

photo credit: <a href=”http://www.flickr.com/photos/pequenasuricata/802099561/”>Pequena Suricata</a> via <a href=”http://photopin.com”>photopin</a&gt; <a href=”http://creativecommons.org/licenses/by-nc-nd/2.0/”>cc</a&gt;

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6 thoughts on “Just for today, this coeliac will vent.

  1. OH, I hope you don’t get too sick. I dread eating out and the last time I had a hamburger with no bun and got so sick. DId they just take it off a bun? I ended up in the ER after 2 days of being sick. Nobody understands it like those of us who go through it. So sorry.

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  2. I’m not a coeliac but i have something very similar aggravated by the shapes of certain “stubborn-to-digest” foods that cause pain and similar symptoms to you (I have Ulcerative Colitis)… I completely get the part about being losing “function for hours or days” and find its very hard to keep people at work happy, or for them to even understand how sudden and completely (for want of a better word) immobilising it can be, and as you said the damage you could be left with. The only thing is there’s not much we can do is there? I find myself comparing my productivity to what happened before the illness. I try not to use the word disease (not even sure mine is in that bracket), but like you i am having to avoid all sorts of strange ingredients swell as the shapes of foods.

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  3. I am not coeliac but suffer a mimicing illness with no diagnosis. I know only too well the feeling. The realisation that your stomach is starting to bloat. The fear of how bad an attack will be. The trying to work out what it was and why. The number of times I was so so careful and then someone put the toast knife in the spread, or used my toaster. “How will she know, it’s only a crumb”. One crumb too much for me!!
    I suffer badly from the neurological symptoms too. Gluten sends me into a spiralling depression.
    Yet I eat out and see people giving me a look like I’m some kind of health food nut. ” can we sneak gluten in, bet she doesn’t even notice”. I got so sick of explaining that I tell people I’m allergic and they’ll have to call an ambulance. It worked too well, one restaurant owner ran out and took my partners naan bread away because it might kill me… but at least they took it seriously!
    Truth is, coeliac or not, wheat and gluten are devil foods. I’ve decided to stay off them as without diagnosis we just don’t know what damage I’m doing to myself. But even if it’s just a massive intolerance, its horrible stuff!
    And with that, now you’re normal, cos you’re not the only one 🙂

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