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Welcome to this week. 13th – 19th May 2019.
This week for me is very important, as the title tells you that it is Coeliac Awareness Week.
When I was first diagnosed with this condition Coeliac Disease, I found it very difficult to come to terms with. Not least because I am fortunate in that I am not allergic to any food stuffs at all. Like most people there are obviously things that I do not like, but I had spent the last 45 years of my life eating exactly what I liked, so the diagnosis was the bottom literally falling out of my world.
Luckily I have some very thoughtful friends and they let me chew their ears off as I learned.
The support from them was absolutely necessary, fantastic and helped to regain my confidence in eating out.
It is important to note that Coeliac Disease is not an allergy or an intolerance to gluten. It is a serious autoimmune condition (if left untreated, it can kill) which is triggered by the ingestion of gluten, whereby the bodies immune system attacks its own tissues, which then leads to other even more serious health conditions. There is no cure. The treatment is a ‘strict’ gluten free diet for life. Cross Contamination of Gluten with other foods is extremely dangerous for us, and one of our major issues, is that people, including the catering industry do not understand how harmful one tiny crumb can be.
Back then, 6 years ago, I would not have much of a reaction at all, in fact I didn’t have any symptoms when they found out what the problem was, I was just extremely tired – or permanently exhausted, if you like, but I put that down to having two children and running around after them! It turned out I was actually incredibly anaemic with B12 and Folic Acid deficiency anaemia. That has now been rectified.
My reaction these days is extreme. Unfortunately I am one of the unlucky ones who has a very extreme reaction if I eat gluten, within 1/2 an hour of ingesting it, I will become light headed and pass out. It presents very much like anaphylactic shock, even though it isn’t. Then begins what (without going into too much detail) I can only describe as NoroVirus and Appendicitis (but worse) all at once – or not to put too fine a point on it – both ends at once and the middle as well. This is painful to the point of not being able to stand up, and until my body has expelled all the trace of the gluten there is no point what so ever in even trying to take painkillers (either way they end up down the toilet!). Depending on how much gluten I have ingested will either knock me out for 3 days or 10 days. I tend to only eat liquids as advised by GP for 72 hours after that kind of episode (which is fun, if you’ve ever looked at the ingredients on a tin of soup) as most of them are not gluten free. Due to this of course I become again permanently exhausted as obviously the pain takes its toll, but also quite often I will have been up 1/2 the night in pain or running backwards and forwards to the bathroom. Once I can take painkillers then obviously I will and I then sleep for England. I have to take 3 painkillers sometimes, Buscopan, Paracetamol and if that doesn’t work I will then take Tramadol (but that I put off for as long as possible as it actually makes me feel sick and eats my brain for breakfast) however it does the trick and kills the pain, allowing me then to sleep the rest of it off. Every person with this condition presents differently and at present it takes on average 13 years for diagnosis, from first talking to a health professional.
I am the exception, not the rule, most people are a lot less severe than me. I’ve had all the checks and I do not need an epipen,. What they think happens, is because my blood pressure is low, in order for my body to fight the reaction it needs to make me as strong as possible, so the easiest way to do that is to protect my internal organs, hence all blood rushes there and I pass out to restabilise my blood pressure.
These days, I eat out as often as budget will allow, but the internet is invaluable for doing research. Coeliac UK membership gives me access to an app on my phone called Gluten Free on the Move, which allows me to search for venues that can cope with Coeliacs all around the country, and venues other members have visited where they have been well cared for and accomodated. I also am not as self conscious, when asking relevant questions now, it is the old adage ‘you get used to it.’ Also I am more concerned with staying well than with being seen as fussy, they can think what they like, I would like to enjoy a meal out and get home in one piece, and stay that way!
It also gives me access to another app which is called the GF food checker, this is fab for checking if some things (crisps is quite a good example) are Gluten Free or not, by allowing me to scan the barcode of that item. The item is then cross referenced with the online Food and Drink Directory. If it’s not listed, I will be told, but that doesn’t necessarily mean that the food is not safe for me. To know that, takes time, along with education of what can trigger symptoms. As you get used to your new lifestyle these things become a little bit easier to know, but for £24 a year it’s worth the little extras.
As I became frustrated about how little was known about this disease and how misunderstood it is, I decided that I had to do something to help others like myself, who had been diagnosed later in life, and therefore were used to a very different lifestyle to the one that is now out in front of them, and it is absolutely terrifying, with not a lot of support.
Did you know, many GPs who diagnose their patients with this condition, are unaware that the Coeliac UK website even exists? That’s mad! If it wasn’t for Coeliac UK and their help I would not have come as far as I have as quickly as I have in the 6 years after my diagnosis. Most GPs should at least know to steer people towards Coeliac UK via google.
Due to this I decided that I would write a book to go alongside my blog ‘a stressful adventure with food’ to see if I could help others going through what I had, in having to completely rethink my life and how I dealt with things.
A small percentage of the sales of this book (see below for link), will be donated to Coeliac UK to help them with their research into the condition and the support of their members.
Coeliac Disease is an illness, my need for Gluten Free is medically necessary and therefore it is not a fad diet. In the last 6 years alone CUK has made great strides for us with the condition, but there is still a lot of misunderstanding as to why we are unable to eat toast out of your normal toaster (due to the crumbs in the toaster) and that it will make me, anyway, extremely ill (see above). Obviously I would like to stay well for as long as possible, and to date the last episode I had was in June 2017 when I collapsed at work, having ‘glutened’ myself at lunch time, via another family member not thinking about what they were doing! Accidents do still happen, but not so often these days.
If you have got this far, Thank You so much for reading. I hope this now gives you a better idea as to why some people when in a restaurant ask if they have a separate frier for the chips, as to me this is extremely important, even though to you it may seem trivial and silly.
The link to the book is below, so if you would like to read more and support Coeliac UK in the process please do.