Yes it’s that time of the year again and Coeliac awareness week is up on us once again. It is running from 13th- 19th May. This year it is focusing on diagnosis.
Coeliac UK is the national charity that helps to raise awareness of this autoimmune condition. It is a great place to start for those who are newly diagnosed, and for those of you who think you might have Coeliac disease.
I thought at this point I would tell you about my story to diagnosis. I was roughly fifteen when I started getting symptoms that were problematic, such as bloating, stomach cramps, diarrhoea, mouth ulcers and tiredness. Initially after a few GP visits I was told IBS was the most likely cause- due to exam stress from my GCSEs that were the big exams that I was starting to study for- this didn’t seem right to me as I’m not a stressed person, and certainly wasn’t worried about exams etc. Nevertheless I took the advice, changed diet and lifestyle and tried the prescription of anti- spasmodic medicines. Guess what- it didn’t really work, and back to the doctor I trundled.
IBS was still being branded about, until I happened to mention that both my Nan and aunt had Coeliac disease. I was then sent off for a blood test. Sure enough these came back as positive. I was expecting to be sent for a biopsy but after being referred to the hospital, a further blood test and positive genetic test confirmed the diagnosis of Coeliac disease.
I felt relieved and overwhelmed straight after diagnosis, but after my first dietitian appointment, and armed with lots of information of what I could and couldn’t eat I ventured into the supermarket to embark the first chore of Coeliac disease ( and allergies) – label reading.
I won’t lie you will spend A LOT of time label reading, the only thing I can say is that over the years the “Free From” aisles have expanded hugely so the choice offered is getting better and better. You still need to be careful of the dreaded “may contain” warnings ignore them and you can get caught out. – Walkers crisps were my enemy the one day in case your were wondering.
What I can say is that within a week of switching to a gluten free diet I felt so much better. It really is that dramatic. My only side effect of my Coeliac disease is that I’m also one of the 1 in 10,000 that also suffers from Dermatitis Herpetiformis, an intensely ( and I mean intensely) itchy skin condition linked to Coeliac disease.
It is the absolute worst, my first flare up was at university after a pasta mix-up. 2 days later I felt unwell and itchy, by day 4 the rash had appeared, if I could have torn my skin off I seriously would have. It is awful. My GP was flummoxed at first, as he hadn’t seen many cases of it. I was sent for a skin biopsy and the results confirmed it.
Thankfully I don’t get too many flare ups, but nevertheless when I do I tend to go to ground. The appearance of the rash and how rotten I feel puts pay to wanting to go out.
BUT it’s not bad at all having Coeliac- I could have a lot worse. I’ve made some great friends over the years. My top tip is to start at Coeliac UK for advice, and then the Coeliac and allergy community on Twitter and Facebook is brilliant. It’s live a great, big friendly free from hive- there’s always someone that can help answer your questions.
I hope this has helped some of you- Just remember, although it’s daunting being newly diagnosed, you are never alone.