It’s a popular week for awareness for conditions which affect me! With mental health awareness and also gluten free awareness happening this week!
Coeliac Awareness Week was set up by Coeliac UK who campaign for and with sufferers of Coeliac Disease in the UK. Now while I have a gluten allergy and not coeliac disease. I essentially live according to exactly the same diet as someone with coeliac disease, I get all of the same symptoms with the added bonus that I also go into anaphylaxis on occasion when I eat Gluten (along with a few other foods I am allergic to such as mushrooms and tomatoes).
My bowel is bad now, so bad I can barely walk because of how weak I am, but if I was still eating gluten I would be 100 times worse, and this is something I have to remind myself of daily. Especially when I am so broke and need to make savings on food and living a gluten free lifestyle is so expensive!
Unlike those who are diagnosed with coeliac disease, I am not eligible for food on prescription, something I don’t understand as gluten can mean instant death for me if I go into anaphylaxis and don’t get instant treatment…but hey ho that’s the NHS for you!
I honestly, think that paying £3-4 for a half size loaf of bread is disgusting and I’m yet to find any gluten free bread that doesn’t taste like cardboard. So, I have taken to making my own. Now, I am not a baker, not even close. Thankfully, my parents bought me a bread-making machine for Christmas which also has a gluten free setting and can also do cakes and jam so I can just pop the ingredients in and let it do it’s thing.
The thing I find hardest after the cost of gluten free food though is the minefield of labelling! You have to become an expert in which grains count as gluten, and how the food manufacturing process work for cross-contamination purposes.
Oats for example don’t naturally contain gluten, but they are quite often processed closely with gluten during the manufacturing process so get contaminated. This means the only way we can be safe and guarantee they haven’t been contaminated is to buy the much more expensive gluten free oats!
Companies make a fortune out of people like me with medical reasons not to eat gluten, seeing it more as a dietary fad. Believe me, you have no idea how much I miss dounuts…this is no fad!
Many people with conditions like coeliac disease, gluten allergies or intolerances often get incorrectly diagnosed by their GP as having IBS and continue to eat the foods which damage them while never knowing they are making themselves sick.
I only started getting tested after I excluded gluten from my diet myself and noticed the improvement. I then spent a few months convincing my GP it was worth referring me to a consultant which eventually they did.
It can be hard work and for someone like me who has more underlying problems which they are still trying to get to the bottom of it’s a very long process. My hope is one day this journey will end for me and I will know exactly what is wrong with me, what is causing all of my problems, and how I will start rebuilding my life without my bowel calling the shots.