Biopsy for accurate diagnosis of Coeliac Disease. (ultimately – for your encouragement!)

Also known as gastroscopy or endoscopy/duodenal biopsy – I thought it might be important to mention that I did actually have this done! However, because I was away from home and had other important things happening when my initial blood test results came through, I started eating gluten-free without giving any thought to having a biopsy at that point. I was focused on my daughter and her health above all else, and  it just didn’t occur to me that later on down the track I would wish I had also addressed my own situation much sooner.
A number of months later (aka the following year) I decided that I should have the biopsy … mainly because I always like to be certain about things, and also because I was curious to know my actual internal state. I knew I would have to go back on gluten containing foods for this and had been told (by my doctor!) it would only be for a couple of weeks – which I thought would not be an issue! I reasoned I would make the most of it and eat/enjoy all those things I had missed. Ha! What WAS I thinking?!!  And – when I actually found out about the appointment…I learned I had to go back on gluten containing foods for 4 weeks! Suffice to say, it was a torturous month for me symptom wise, and by the time my appointment came around I was just longing for it to be over and to be able to go gluten-free again…not fully realizing how much I had set myself back by subjecting myself to this experience at this late stage in the proceedings.

Moral of my story:
If you have had a blood test that indicates you might have Coeliac Disease and you want it verified – don’t go gluten-free until you have also had a gastroscopy. Your doctor will sort it for you.  
You do have a choice not to have the biopsy.  It is entirely up to you. (I ask myself now, why I needed to know!!!)

For your part, if you choose to have the biopsy done,  you must ensure that nothing passes your lips for 6 hours prior to the procedure being carried out, unless you have medications that you must take. You are allowed to keep taking these usually, although in certain instances notification of drugs must be declared in case there is an issue. When you go for the procedure you will need someone to be available to bring you home. All this info will be given to you in written form prior to the day of your appointment. You get plenty of time to read this at home, and ask any questions prior to the day of your biopsy.

For my part, I had no trouble whatsoever with the biopsy – it was the period leading up to it that caused me the grief! (ie eating food that was toxic to my system in this period). At the hospital I was shown to a bed where I put on the lovely gown (?!) and was administered an IV drip because I had requested sedation (I am not ashamed!).

I do remember being wheeled into the procedure room and being told the procedure might be slightly uncomfortable. I can’t remember having the sedation or for that matter anything else! I woke 45 mins later back where I had started. It was really weird. I actually wondered what had happened to me in that time. I have no recall whatsoever! I started to doubt that anything had even been done. I had no sore throat. I was just a bit drowsy and went home to sleep it off.
And later, when my results came through… I could see the damage that had been done over the years!
In conclusion….this is the bit I understood, ’these features are consistent with the clinical impression of coeliac disease, modified Marsh Classification type 3b diagnosis.’

Ok, so my doctor WAS right! I DID have Coeliac Disease!

2 Years ago today…

Owing to ‘technical difficulties’ (ie trying to navigate the wordpress blog system and also being away for a few days this past week … I have been remiss in writing.
Today however, is the 2nd anniversary of the day I found out my blood had tested positive for Coeliac Disease and I feel I need to mark this significant turning point in my life. What a journey it is proving to be….a rather inconvenient one initially, since at the time, I was spending much of my time in a hospital with my daughter, in another city – one which I was pretty unfamiliar with and in which I now had to try and start living gluten free in. However… it was also THE day I started to realise that the person I was and most of the physical aspects that (largely) contributed to who I was (AND to my personality) were in many respects attributable to this DIS-EASE which I now heard might be inhabiting my body! Things could only get better for me – and I didn’t need drugs for that to happen. I could control it with DIET. EASY!!!

But… (isn’t there always a BUT?!) trying to find my way around supermarkets I was not used to, and reading labels in the dazed state I was in, proved rather overwhelming at first. I admit that I kind of ended up going on a minimal range diet, because I couldn’t cope with the enormous impact of it all, at the same time as trying to be there for my daughter, in all that she was facing. I remember walking round the supermarket/s thinking, ‘where do I start?’ There seemed to be no gluten free sections as such – I knew there was one in my local supermarket (to add further frustration to the exercise!) but nowhere could I find, in this, supposedly more sophisticated city (at least in the areas where I was able to roam) supermarkets catering (I mean as in supplying a special section) for this new people ‘type’ I now found my self categorised as. I vividly remember going down the biscuit aisle, trying not to look at what I now couldn’t have – and seeing mallowpuffs! Mallowpuffs!!! One of my all time favourites – now forbidden food! I had to avert my eyes, keep calm – and carry on!

From being a Weet Bix kid and adult most of my life, I now had to find gluten free cereal. Not fun seeking those out…and not many to choose from. Or that I liked. OR that weren’t at least twice the price!
I discovered corn cakes and they became my bread. I was used to having Vogels bread, toasted (most often with marmite) for my lunch, pretty much on a daily basis. Now it was corn cakes with marmite! And yes… I found out much later on that Marmite was also a forbidden food! Dinner was less of a hassle. But being in another city and not able to shop often because of the situation I was in, meant that I truly did just exist on basic foods. And…. Buzz Bars! And Peppy Chews. My sweet treats. I was so pleased to find out that they were gluten free – and that the hospital convenience store stocked them.
I intend to have a section where I list the GF foods I have found….please bear with me as I navigate the site and get my blog looking how I want it to look.

Being told in May that I might be Coeliac was actually quite good though. One of the lovely nurses in the Bone Marrow Transplant Unit told me about the gluten free food and allergy show on at the showgrounds. see http://www.glutenallergy.co.nz
It happened to coincide with the beekeeper’s visit to Auckland and he relieved me at the hospital so I could go. It cost about $10 to get in then, but I more than got that back with all the lovely free samples I had, and was also able to come away with. I would like to go again one day, now that I am more gluten free savvy. Things would look entirely different to me, I do believe. (I remember buying up boxes of cereal that were on special…if all else failed I would have that to fall back on!)

I spoke to someone from Coeliac New Zealand there, and learned about joining the society. More on that later. But I do recommend it.
My time was limited and because I was actually also not feeling the best (but now knew why!) I didn’t really do the show justice. So yes, I must return one day.

A lovely friend came to visit in those early days also, and brought with her some lovely GF treats.

Anyway, today’s my 2 year anniversary! Of the day I started to rebuild my body!
And tomorrow is another anniversary, my 21 year old daughter’s ‘2nd’ birthday, marking the date of her Bone Marrow Transplant….also Mother’s Day – the best one ever for me! So for now, I bid you adieu.
Keep watching and reading!
AND… Happy Mother’s Day, to those mothers who do such a great job bringing up the next generation!

My name is Bronwyn and I am a Coeliac.

Greetings everyone.

My name is Bronwyn and I am a Coeliac.

Sound a bit like an AA meeting confession? I kid you not – when I am brave enough to publicly make this ‘confession’, looks of incredulity pass over the dials of most people. It sounds BAD – therefore they ignore me, in the hope that I might go away and never bring it up again!

I am amazed how many people have never heard of this (AUTO-IMMUNE) condition, or rather, might have somewhere, in the dim, dark recesses of their mind, subconsciously linked the word COELIAC with the words GLUTEN FREE – and then, come up with WEIRDO! That is one of the reasons I have decided to now write this blog.

The other is to support fellow Kiwis out there who might be in the process as I write, of finding that they also, are ‘1 in a 100.’ Yes….SPECIAL!

Nearly two years ago now I heard that a blood test result indicated I (might) have Coeliac Disease. I was totally incredulous!  I actually knew about Coeliac Disease,  a close friend was diagnosed with it several years ago… but in comparing myself to her (as you do) I thought the doctor had got it totally wrong!  Besides, I was in my (then) 19 year old daughter’s room in the Bone Marrow Transplant Unit of Auckland hospital when I heard this from my husband (aka the beekeeper) – awaiting her transplant the following day.
I knew I would have to change my diet and start eliminating all traces of gluten from my diet, because that is the ONLY way to control it and prevent further health issues and repair the damage already done to the small intestine. Once a Coeliac, always a Coeliac – yes, it STILL sounds like an AA message!

I didn’t have time for Coeliac Disease – this was most inconvenient, to say the least! I realised I had rather a lot of questions …I would have to begin my quest to learn more and get my own health back on track.

But right now…as I write… Prince William and Kate Middleton are soon to get married (in my lounge!) … WATCH THIS SPACE!