gluten free, health, wellbeing

One year on from diagnosis – what I’ve learnt about coeliac disease

It’s been about a year since I was formally diagnosed with coeliac disease and since then there have been a few adjustments and I’ve learnt a few things…

In no particular order here are some observations about coeliac disease and how it has affected me:

  • I know what it means to be glutened…and it is not nice!
  • I have put on weight. I used to be able to eat anything and it literally went straight through me, now, just like everyone else i have to be careful about the amount I eat…I’ve put on 2 stone since diagnosis
  • If you are in the UK and you haven’t already, join the coeliac society, it is a brilliant resource and has so much information, there is a great app for smart phones + they are constantly encouraging medical research into coeliac disease
  • Use social media to find out so much about the disease and gluten free options – there is a wealth of info out there
  • Hangovers aren’t as bad! Previously I was drinking beer once in a while and didn’t realise what it was doing to me. You get a double hang over – one from the alcohol and one from being glutened
  • If you go to a restaurant don’t be afraid to make it clear that you are coeliac and what the implications are – there are those that take coeliac disease seriously…and those that definitely don’t
  • You get drunk quicker, be careful
  • Whatever anyone tells me, gluten free bread is not as nice as a freshly baked poisonous loaf, still warm with melted butter
  • Ditto with pasta
  • Chocolate Brownies are better
  • Cider actually tastes OK
  • Get a bone density scan – I have a mild case of Osteoporosis and Oseopenia as a result of not absorbing any calcium for a long time
  • Be careful of all the extras that go into gluten free foods – there can be a lot of extra sugars, palm oil, butter etc which increase the calorie content
  • I get told that I look well, that I have stopped the ‘heroin chic’ look and that I actually have some colour in my face – I used to just have a pallid grey look that I had put down to living and working in London
  • I have loads more energy and enthusiasm.
  • Get a pedometer (I’ve got a fitbit) and it makes me walk my 10,000 steps a day – which helps keep that weight gain at bay and helps the osteoporosis. Alternatively get a dog (or as we have, do both).
  • If you can let restaurants know that you need a coeliac / gluten free menu in advance do so – a couple of times I’ve had my very own fryer so that I can have most things and they haven’t had any cross contamination with batter etc.
  • I miss calamari
  • There are some great gluten free beers out there – good starting point is http://www.gluten-freeshop.co.uk
  • I don’t think I have felt this good for 20 years – if you are unsure and in any doubt get yourself tested for coeliac disease with a blood test to begin with.

Hopefully you may relate to some of these thoughts, you may have lots of other observations…let me know what you find good and what proves difficult.

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allergens, coeliac, gluten free, korean grill, london restaurants, tapas

From one extreme to the other

One of the joys of my job is that I get to go to lots of different restaurants – both with media partners and clients. But, since becoming a diagnosed coeliac sufferer it does mean that I clearly have to be more careful about what I eat.

With new regulation coming into force last December in the UK, it has meant it is a lot easier when going out to eat – in theory all restaurants should now have a specific allergen menu detailing exactly what is in each dish that is available but I’ve found that’s not quite the case yet.

Last week I went out for a couple of lunches, the tables were booked by someone else so I had no input into the choice; one was good (no, not good, they were brilliant and the food was terrific) and one was definitely not!

Koba, 11 Rathbone Street, Fitzrovia, London, W1T 1NA

Koba opened in 2005 and has been offering a mix of Korean food ever since. Each table has a central BBQ / hot plate which is used for barbecuing a mixture of meats and veg.                            photo courtesy of fluidlondon.co.uk

It’s a smart, sleek restaurant – lots of dark wood and clean lines and was busy with lots of diners on a Friday lunchtime. A good sign.

On arrival we were given menus and I asked if they had any gluten free / allergen menus that I could look at to help work out what I could and couldn’t eat. I was told that they did not have any menus like that.

Looking through the menu it became clear that there was a lot I couldn’t eat – as most dishes contained soy sauce…but not to worry as I could ask them to change some of the food slightly.

Unfortunately this was not the case – they were unwilling to change any dishes.  A lot of the food is marinaded in a sauce which contains soy sauce and I asked that I may have the dishes without the marinade – to no avail. It turned out that out of 20 odd starters I could have part of one – seaweed. For main courses there was lots of options but again unfortunately I was told I could have 3 of the BBQ dishes only – ribeye steak, pork belly and salmon which were all to be grilled on the central hot plate. So not a lot of choice plus, using one hot plate for everything to cook on meant lots of cross contamination from the other dishes.

Still I did have a bowl of steamed rice.

My five companion diners were able to enjoy a real mixture of dishes – spicy squid, a hot stone pot with rice, noodles and various grills. But they also came away unimpressed. I know I had reason to be disappointed but they felt that the food was not up to scratch. Service was indifferent – the waiter did little to help out on what I could and couldn’t eat and they were dismissive of the other diners in the party.

So, learnings from this – I should have rung them beforehand to make sure they could cope with a gluten free option BUT they should have also had a clearer menu with allergens detailed. Beware, if you do suffer from coeliac disease do not go to Koba.

Navarros, 67 Charlotte Street, London W1T 4PH

This is a mainstay of the restaurants on Charlotte Street in central London – it’s been there for years, I first went in 1999 but I had not been since being diagnosed so was interested to see how they would do.

This time, a phone call beforehand did alert them to my gluten free needs. And they were prepared!

On arrival I was given a full menu with details of all allergens – really clear on what I could and couldn’t eat. I was also informed that any of the dishes with ‘traces of gluten’ could be cooked for me as they had a separate fryer and pan ready to cook!

You can see the full menu here:

http://www.navarros-tapas-london.co.uk/columns/allergen-menu/

We had real mixture of dishes. This is tapas at its best, not trying to be too fancy, good honest food as it was meant to be.

– classic pimientos de padron, a hot one hidden within

– patatas bravas, slightly spicy, good tomato base on perfect potatoes

– tortilla espanola, still gooey in the middle but firm around the outside and real comfort food on a cold day

– gambas al ajillo, lots of perfect prawns in garlicky sauce, delicious

– chorizo picante al conac, rich Spanish sausage

– brocheta de pollo, chicken breast skewers with tasty steamed veg

I was gutted not to be able to eat the calamari – it looked (and my companions said tasted) delicious and unfortunately I could not have the bacalao a la rotena, chunky cod in a tasty tomato sauce. But, we did have seconds of the brocheta de pollo, chorizo and patatas bravas.

Time was against us so we didn’t try the deserts – but I would have no hesitation about going back, a good excuse. Service was impeccable, they were knowledgeable and understanding of what I was after.

Thank you Navarros – to be absolutely recommended for anyone with any dietary requirements.

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entertainment, music, the cure

Top time at The Cure

Last night I was lucky enough to be able to get tickets to see what has to be my favourite band, The Cure live at Hammersmith Apollo in London.

What this has to do with being a coeliac of gluten free I don’t know but as this blog is my life and loves, I thought I would ramble on about this for a change.

Normally The Cure play fairly large venues – Wembley, The O2 or massive sheds abroadgb4. However, this was a bit of a homecoming gig to return to a venue they had played 30 years ago and to about 5,000 people, with the same support band that they had all that time ago.

It was billed as a Christmas special, not to be missed and with the promise of a few surprises. And there were…

The set list was made up of a real mixture – classic pop songs that they normally play live  – Just Like Heaven, Close to Me, Boy’s Don’t Cry, Lullaby and Lovecats. There were also plenty of dark, brooding epics – the thunderous opener Shake Dog Shake, 100 Years, M and From the Edge of the Deep Green Sea. And yes, they did also play a couple of songs that I’m really not that keen on – Wrong Number (why do they do that?) and Want.

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But the real surprise was the volume of rarities that they played. As a real fan of the band it was great to hear Dressing Up from The Top album, B side Man Inside My Mouth (never ever been played live before) Like Cockatoos from Kiss Me Kiss Me Kiss Me and Kyoto Song from Head on The Door.

However, we weren’t expecting to hear every song from The Top album being played – in hindsight this makes sense now as last time they were playing here, they were touring this album in 1984. Yes, there are a couple of songs on this album that are ‘difficult’ – The Wailing Wall and The Top for starters but Give Me It was outstanding as the last song of the main set, The Caterpillar sounded as quirky and fresh now as it did when I first heard it back in the 80s and the military like snare sound on The Empty World (which had not been played live since 1984) sent the crowd into rapturous applause.

In total they played a huge 40 song set for over three hours. There were 4 encores! As Robert Smith came on for the last encore at 10.55, he said “We’re probably going to overrun a bit but pffft, it’s Christmas!” And after this they managed to play 5 songs! Robert seemed on great form, he was chatty and up for banter, the band were tight and sound was good.

I have now seen The Cure too many times to count, from the first time in 1987 to this – and last night’s gig was right up there with the best of them, if not one of the best. They are playing tonight and tomorrow – if you’re reading this in time and you’re near London do all you can to go, it will be worth it!

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Full set list:

Shake Dog Shake
Kyoto Song (First time since 2008)
A Night Like This
alt.end
Wailing Wall (First time since 1984)
Bananafishbones
The Caterpillar
The Walk
A Man Inside My Mouth (Live debut)
Close to Me
Lullaby
High
Birdmad Girl
Just Like Heaven
Pictures of You
Before Three
Lovesong
Like Cockatoos (First time since 2004)
From the Edge of the Deep Green Sea
Want
The Hungry Ghost
One Hundred Years
Give Me It
Encore:
The Empty World (First time since 1984)
Charlotte Sometimes
Primary
The Top
Encore 2:
Dressing Up
Piggy in the Mirror (First time since 1997)
Never Enough
Wrong Number
Encore 3:
Three Imaginary Boys
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Play for Today
A Forest
Encore 4:
The Lovecats
Let’s Go to Bed
Why Can’t I Be You?
Boys Don’t Cry
Hey You! (First time since 2004)

Photos are all mine from last night…please let me know if you want to use. Thanks

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gluten free, health, travel

Viva Cuba

I’ve survived my first foreign trip having been diagnosed with Coeliac disease!

Whilst I’ve been lucky enough to travel to lots of different countries across the world, I must admit that I was quite nervous about this as this was the first time following my diagnosis. Stating the obvious, Cuba is a very different place to Surrey and there was not going to be a gluten free aisle at the local supermarket.

But, what a place. I loved it, incredible sites, sounds and smells. The people we met were incredibly friendly, the architecture in Havana was beautiful, both the decaying and restored buildings (which was great as one of my loves is photography) and the mojitos were always flowing. However I’d not heard good things about the food in Cuba before I left, bland, unseasoned, no choice and at best sloppy! This was so far from the truth, the food was varied, tasty and to the best of my knowledge gluten free

On the first morning at our hotel (The Nacional), I was dismayed to see what seemed to be a large mound of breaded products, buns, cakes and toast, a gluten fuelled nightmare!

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But then, I found the fresh fruit, cold meats and even got into a spot of cheese for breakfast. And, luckily there appeared a man who was on hand to produce omelettes to order – so they became my staple breakfast, even coming with a smiley face.

We would then have lunch and dinner out at privately run restaurants (as opposed to state run) called Paladares. You see, the state run restaurants tend to have little interest in what they produce – meaning that both food and service is lacking. But the Paladares we went to were great – I can’t remember them all but highlights included wonderful seafood – grilled prawns, lobster and red snapper, carpaccio of beef and octopus, cerviche and steaks cooked perfectly to order.

A couple of places to highlight:

Firstly, La Casa de Sarah on the Western outskirts of Havana, in an old fishing village called Santa Fe. It is a simple wooden, private beach-front house run by a lovely lady called Sarah where you can stay or as we did, go for lunch. We had typical Cuban food here (no choice) – super tender slow cooked pork, rice and beans, tapioca and salads. All washed down with a few rums and some Chilean wine.

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Casa Sarah also has a beautiful jetty with sofas at the end of it under a thatched roof, the perfect place to watch the sunset from with another rum or fruit juice.

Secondly was a simply gorgeous restaurant with an amazing menu, Vista Mar restaurant, again to the west of Havana. Plenty of choice without any gluten – 20141201_194252from fresh seafood to meat dishes and fantastic sides, the best sweet potato chips, plantain tapioca and refried beans that tasted like nothing I’d ever had before. I went for a real treat – lobster tail with some red snapper, not to be missed.

A final recommendation is lunch at Chef Ivan Justo Paladar in Havana, again we had a mixture of food laid out for us – chicken, pork and fish with a mixture of fresh salads, tapioca and rice with beans. It was so simple but perfectly cooked and again, everything was OK for me to eat. You can see more about this restaurant here: http://bit.ly/1rXpJup

A couple of watch outs, a lot of the starters were likely to contain gluten – particularly the croquettes, anything with batter (prawns, veg and whitebait) and obviously all the bread. Likewise the deserts did tend to be more gluten based, key lime pie, chocolate tart and caramel puddings with biscuit bases but there was generally always some ice cream which was fine for me and had no ill effect.

Of everything on my trip, I found the most difficult thing in Cuba was not being able to have an ice cold beer whilst watching the world go past. This still remains the biggest sacrifice, something I’m getting used to but there is just ‘something’ about having a beer when on holiday. Still, without a doubt I will be returning to this wonderful island full of smiles, it should hold no fear for anyone with Coeliac disease or need of a gluten free diet, provided you are willing to explore outside of the hotel.

Cheers to that.

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health, wellbeing

It’s been a busy week

Good news, I’ve had my gut biopsy and I can now be properly gluten free.

As I mentioned in my last post, unfortunately you have to ensure that you continue to eat food with gluten in to make sure that you don’t have a ‘false negative’ when being tested for coeliac disease. This is really important (https://www.coeliac.org.uk/coeliac-disease/getting-diagnosed/) but now I truly understand what it is to be ‘glutened’.

Once I’d had the blood test I instantly cut gluten out for a bit and it was wonderful – I’d not felt that good for years. No constant diarrhoea, no getting up in the middle of the night to go to the loo, no rushing to the toilet in the middle of the day and, as I now understand, no feeling constantly tired.

But then as instructed by coeliac.org.uk and my doctor I went back to eating some bread and food with gluten in it until my biopsy. And it was then, that I discovered how bad I’d been feeling for years and years…I really didn’t know that the feeling was anything other than normal!

I’m glad to say, just over 1 week after my biopsy and I feel so much better again.

Now don’t get me wrong, the biopsy process is certainly not the most pleasant – take the sedation option if it is given to you. I had no idea what was going on which was much better so do not remember the camera being put down my throat. It did prove to be slightly tricky though when the nurse decided to tell me all about the next steps – whilst I was still coming round. I have no recollection of this but luckily my wife was there to fill in the gaps!

In the same week as the biopsy I’ve also had an appointment with the dietician which was very useful – I wasn’t aware of the difficulties in absorbing Calcium and Iron so need to adjust diet to take this account. Good news as I love cheese, any cheese, the smellier the better. Added to that I also need to make sure that Vitamin A & D levels are higher – it looks like I’m low in those too.

And following on from the dietician I then had a bone density scan to investigate my calcium intake and check my bones aren’t too brittle. This was all news to me, yes I realised that by cutting gluten out of my diet would help my stomach but never realised that I was at risk of other side effects such as this and a lack of vitamins and minerals being absorbed.

So, on a serious note, if you’re not sure about whether you have coeliac disease – get it checked out quickly with a blood test from your GP, don’t hang around as there are all these other complications that can happen.

Now I’m waiting for the formal confirmation that I have coeliac disease (even though I know I do). It does seem ridiculous that when we have a cash strapped NHS in the UK I still have to go through all the testing when the blood test is positive and my symptoms have improved so much – still that’s why I’ve paid my national insurance for 22 years. Hopefully I will also hear about the bone scan soon and with any luck, everything will be OK. All I can say is that the NHS and the Royal Surrey Hospital have been great so far.

In the meantime I’m off to Cuba on Thursday – the first foreign trip having been diagnosed, I will let you know how it goes!

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Uncategorized

in between

I’m at that in between phase – the blood test is positive and I have been diagnosed with coeliac disease but it has not been fully confirmed yet.

Unfortunately the blood test is only the first phase of diagnosis and I now need to have a gut biopsy.

Since diagnosis through the blood test I’ve cut out gluten from everything – bread, pasta, cake, biscuits, BEER through to things I never knew even contained gluten such as Soy Sauce. As a result my symptoms are so, so much better – better than the last 22+ years which is amazing and something I never expected by cutting out gluten. But, this is the wrong thing to do, I have to keep on eating gluten for the time being.

I’m not concerned about the gut biopsy although I’ve been told it’s not the most pleasant procedure in the world – one description likened it to having lego bricks forced down your throat! What is more annoying is that I have to continue eating foods with gluten in them until after this happens – otherwise I’m in danger of having a false negative in the test i.e. it says that I don’t have coeliac disease when in fact I do. Unfortunately my GP was not clear on this point but luckily through investigating the coeliac.org.uk website this has been made clear…link is at the bottom of the page but be aware.

It has taken a step change in my diet, I’ve had to start reading details of what is contained in everything (which I never did previously) and it has meant that I need to be organised and aware of all foods. This will all be good practice for the rest of my life, but, for the time being, I can’t cut it out quite yet.

Over time I aim to document this change in my life and how that may be able to help other people new to this world of coeliac disease, hopefully this will be of some use to anyone that reads this.

In the meantime I am due to see a gastroenterologist next week for initial consultation and hopefully get an appointment in the near future to have the biopsy. It’s frustrating, but after 22 years, what’s a few more weeks? I will then be able to move on, do this properly and cut out all gluten for good.

For more information on diagnosis see: https://www.coeliac.org.uk/coeliac-disease/getting-diagnosed/gut-biopsy/

 

 

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