Where did the time go?

I used to be a regular blogger on another page and sometime around summer 2014 - I just stopped, I know why and something quite clearly had to give. I started studying for a Diploma last August and with the agreement of my Tutor we aimed to get it completed prior to Christmas, so in just under 4 months from starting the first piece of work to handing in my entire portfolio I did it! I heard 4 days before Christmas that the work had been internally verified and I would be getting my certificate by the end of this month. To add some perspective to this I studied all of the previous year and finished in July 2014, then spent my summer holidays training for a half marathon, studying and trying to show my children how to balance lots of work whilst having a good time with them too.
To some it's not a lot but I'm really proud of what I achieved in 2014, all the while coming to terms with my own health issues. I trained 329 miles last year - 80 more miles than the each of the previous two years and I'm going to stick with the training this year - it will be at a slower pace as my children have shown a real interest and I want us all to enjoy getting out and about on Shank's Pony!

I've just baked and gifted the second gluten free cake recipe I've ever found and liked (Glutafin Victoria Sandwich with a drop of almond essence as well as the required vanilla), light, moist and tasty - barely different to a gluten containing version. I'm not obsessed with matching gluten containing flavours and textures but most GF versions just aren't good enough in my view. My diet over the past few months has changed incrementally but looking back is now significantly different. I have all but cut out sliced bread of any kind because commercial varieties are claggy and dull tasting - I also don't make my own as it's such a waste of food when it doesn't last more than that day. I love Livwell's GF part baked rolls and have a selection of them on repeat prescription, I refresh them each time and that's enough for me.

I have really cut down all my GF 'alternatives' like pasta and pizza bases and added lots more veg options instead, so if I have a pasta dish it's at least half less pasta in the pot and I cook the veg at the same time. My body is changing still and my energy levels continue to improve - I haven't had skin issues for ages and I feel healthier too.

I've entertained a few times, most recently cooked a big roast meal and the guests had no idea the yorkies, gravy and apple crumble pudding they were eating were any different! Big success I think.

If you're looking for a deal - Lidl is this week offering Kelkin products at less than I've seen in other major UK supermarkets (I'm off tomorrow). Check it out here if interested http://www.lidl.co.uk/en/2486.htm believe it runs out on 14th.

Family Matters...

I started to look outside of myself and observe more closely my children's habits and toileting. I began to wonder if I hadn't passed on the genetic pre-disposition for Coeliac disease and raised my concerns with my GP, she wasn't concerned and actually that made me more so (they don't call us the worried well for nothing). I left it a bit longer and then went to see another GP at my practice and she recommended we have the boys blood tested for the antibodies relevant to Coeliac disease.

I took the forms straight to the hospital walk-in Phlebotomy unit as the GP advised and we waited to be tested, only to be told that due to their ages my children needed numbing cream on their arms an hour prior to testing and that the Children's unit would need to do the tests as they employed specialist staff to keep the experience as calm as possible.

We went to see the unit and made an appointment for 2 weeks later and then called back at the doctors to get the prescriptions for the cream we needed.

The specialist nurses (there were three in the room) were brilliant with both boys - the cream worked wonders and only my youngest got niggly when he saw some blood on his arm where it was flowing really well. They were distracted with i-pads and other toys and I got to hold them both in a cuddle to keep them happy. Nanny sat with the other whilst each was having their blood taken.

The boys and I on a trip to London recently (Choccywoccydoodah does a fab GF Lemon Cake)

3 weeks later we had the test results and I'm pleased to say that I haven't passed on Coeliac disease to either boy (at this stage anyway). To make mealtimes easier they're eating a fair amount of GF food and haven't noticed the difference - slowly my kitchen is becoming GF altogether and when the boys both have free school dinners next year, there will be even less risk of contamination at home.

Both boys are engaged and interested in their mummy's poorly tummy and I'm going to keep an eye out in case they show any signs of the disease triggering.

On another note both my sister and father have had positive blood tests and biopsies and are starting their gluten free lifestyles in their own time. It's going to be interesting to see how we all cope and I'm sad they have to make the changes too.

Fast Forward...

I've had two months of living a gluten free lifestyle and all I can say is I wallowed for at least half that time mourning the loss of some of the things I took for granted. Because, in part I recently spent time thinking about all the places in the world so far that I have travelled to and the cuisine I have tasted and that I wouldn't enjoy in the same way again; had a little chat to myself and realised that I was so lucky - I had that time to explore normally and many don't have the opportunities I've had to travel let alone get a square meal each day. No more pity parties here!

So skip on another fews weeks and at least 2 cross contamination/glutening mistakes and I've just received my first order of food on NHS prescription.

I have opted to pay by ten monthly direct debit for a Prepaid Prescription Certificate, at a cost of £104 a year and £10.40 spread out I think it offers me the best value for money. I didn't sign up straight away as I wanted to have time getting to know what was on supermarket shelves and what I liked - sadly not a lot of it has been really inspiring but at least I know what I wouldn't try again. As I couldn't buy some of the prescribable products off the shelf I'm trying them over the next week for the first time - I'll let you know what they're like. (I could have bought most online but I'm not home enough to receive packages and I didn't want fresh products going back to a depot that I couldn't collect from, I also couldn't face the higher prices).

Where to begin?

How long do you suffer with something that you think is fairly normal or at least normal for you before you begin to question the wisdom of all that delaying?

For me, it took until I turned 31 for my everyday stomach issues to come to a head - I don't remember having the issues as a child but then most of my childhood memories are of all the things we did together as a family and not the intense pain and discomfort that I felt in the last year.

Last Summer, we took a camping trip to celebrate my husbands birthday and visited Longleat Safari park, I didn't eat anything that was out of the ordinary for my usual diet; we had a takeaway Chinese the first night as we had arrived late and not brought dinner supplies (on purpose - it was only a 2 night stay). That night, almost as I was eating the meal, my stomach swelled and I could have passed for carrying a child in the third trimester - it also felt very hard and excruciatingly uncomfortable. I thought it was a bad takeaway and drank lots of water and my usual green tea blend, I slept little and badly.

On Safari morning I had a very small bowl of coco rice cereal and another green tea, hoping for the best that it would settle, it seemed to improve and I couldn't not let the family go on the trip. We drove around the safari for a couple of hours in the morning, the relief I felt getting out of a seated position at the end was immense and it surprised me that I was still feeling this way. I was incredibly tired and felt dazed in the heat so I decided I had to eat or I wouldn't make it through the family day out, I had a sandwich, crisps and fruit we'd picked up from a shop on the way and an icecream there. Plenty to drink as it was a very hot day, it felt like it was easing in the afternoon and we stopped in a park cafe for our tea, so we could have a kick around in the camping field when we got back, without stopping to prepare food. I don't remember what I chose now but again it didn't sit well and I was still more bloated then I'd ever experienced despite it not being as bad as night one.

We didn't dawdle the next morning, a quick cereal breakfast again and we de-camped before the threatening clouds in the distance actually caught up with us. When we got home I went straight to the out of hours GP service, where I was given what felt like a comprehensive exam and consultation and some anti-spasmodic medication - my entire abdomen was still in pain and they thought it could be gallstones so referred me for an ultra-sound.

The scan revealed no issues and my own GP advised to wait and see what happened, the medication didn't make any difference to my pain levels or my sore swollen abdomen. The bloating episodes kept occurring so she ordered some blood tests, which also came back ok - one level was a little elevated but nothing significant or out of the 'normal' range. Whilst we were looking at the results the GP spotted that she hadn't tested for Coeliac and thought it would be worth testing and ruling it out.

Suffice to say that it wasn't ruled out, the blood test indicated the need to have a gut biopsy taken via an endoscopy procedure. Eight weeks later I was in an NHS hospital having the procedure done, I elected to have the numbing throat spray and a few minutes later it was over. Now that I know what it's like I don't think I could do it again without the alternative of sedation (which had been offered but I declined), it wasn't painful until later when I could feel the biopsy sites aching but I found it very unpleasant and couldn't control my retch reflex well.

Throughout the diagnosis stage I was eating more gluten than I have ever consumed before and felt horrendous, tired, moody, terrible skin, greasy hair, bloating, nausea, no energy for anything, stomach cramps and I needed to be close to facilities at all times.

As soon as the biopsy was done I made the decision with my GP to start cutting out all sources of gluten - some symptoms (cramping, nausea, bloating) disappeared within a week, others have taken longer, I've had persistent breakouts of spots all my adult life - recently they aren't appearing at all.

When the biopsy results confirmed Coeliac I was relieved, it confirmed my suspicions and re-inforced that the diet change was what was right for me.

Now, I'm due to see an NHS dietitian next week and hope to get lots more advice and guidance on how to make this change healthily for the rest of my life.

No more wheat for me!

Please remember that this is my journey and any changes I made I did in consultation with my GP, I recommend that if you have concerns you get in touch with your health practitioner.

Preface...

I am starting this blog to chart my personal experiences with Coeliac (Celiac) disease, I was diagnosed only in the past month and in the scheme of things from when my symptoms became severe to then was less than a year. I've since read that for others diagnosis and subsequent support can take an awful lot longer to achieve and my heart goes out to those dealing with that.

I'm writing this down because I like to and hope that if you choose to read - you do so because you are interested or feel similarly. At the moment Feb 2014 comments are open and unrestricted by funny codewords or other such stuff but I reserve the right to restrict/close them having had some experience with spam comments before.

I feel I should say that Coeliac disease itself affects my body in ways that aren't always pleasant to discuss so in the interest of trying to retain some dignity I don't plan to get graphic with the details.

New to all this, so far I have found Coeliac UK to be the most helpful and comprehensive place to go for information and support.

I'm not medically trained and don't wish to mislead anyone - always consult a medical professional if you have any concerns yourself. I do not advise anyone make significant changes to their diet without proper advice.

Filthy mirror/lens shot - 2 years prior to diagnosis