It’s that time of year again, Coeliac Awareness Week, and last year I got such a positive response from the story of my diagnosis and how undiagnosed coeliac affected me. And a lot of people could relate to it with their symptoms and feelings too. But I wanted to speak about what it’s like to have coeliac disease, and how life has treated me since diagnosis, in the hope that this may help some newly diagnosed coeliac, family member or friend. And some of you might find that you relate to this as well. So let’s get started as to what’s been going on in my life.
Have I noticed a difference?
I’ve spent a lot of time looking back on all of the little symptoms years before even being considered ‘ill’ enough to actually be tested for coeliac and I’m like “Wow, that makes sense!”. And from this I understand coeliac disease a bit better. I still have symptoms from time to time, but it’s got so much better. Coeliac UK say that it can take a few years for the gut to completely heal. But my fatigue isn’t anywhere near as bad as it used to be, I’m not back and forth to the doctors getting told I have this deficiency, and that deficiency, and overall my health has improved, although I still don’t feel 100% ‘healthy’ from time to time. I’m actually at a very healthy weight now too, so I must be doing something right.
What’s been easy?
Well, getting gluten free items has improved a significant amount over the years and the range has expanded a LOT. The quality has got better too. I think getting close family and friends to understand coeliac disease has been easy for me, because at the time of my diagnosis, there was a lot of publicity on the TV and in magazines. They understood it well and wanted to help me reach my health goals. My close family are my biggest cheerleaders, even at family parties they put on an amazing gluten free spread for me!
My frustrations as a coeliac.
Repeating myself is grating on me a little. “What happens when you eat gluten?” is tiring, quite frankly. Because NO-ONE wants to really know right? I also feel very anxious whenever I eat out because your health is in the hands of those claiming to have a gluten free menu. I will be honest, I have been glutened at some accredited chains in the past, so I prefer to eat at the smaller more independent restaurants that understand that gluten free options are for people like us coeliacs and not just a money making food trend.
I also can’t stand it when people think being gluten free trendy. How is spending 60% more for bread that’s not as good trendy?
Oh, and I really don’t like how some people I know can be very ignorant towards it and don’t even want to try to understand. I don’t do this to be different, I have to follow a gluten free diet because I don’t want to shit my pants in public.
What have mealtimes been like in a mixed household?
Well, I worry just as much as I do when I eat out. Because I live in a house where everyone eats SO MUCH GLUTEN, I worry so much that my food has been contaminated with gluten, so a lot of the time I make my own food. But it makes me feel very isolated. I don’t expect someone to go out of their way to make a 100% gluten free meal for me, but if someone does, I’m so thankful. When I go and visit my dad, he is always so enthusiastic about gluten free food, and he loves talking to me about what he’s found in the supermarket. He will go out of his way to make sure our meals are gluten free and I appreciate it so much.
I could go on a lot about how I’ve adjusted to being gluten free and all, but this would go on forever! But if you want to read some more about coeliac life, here are some blog posts you might like: