Mid winter resolutions

I have a new doctor. This is significant because I have limped along with a series of absolutely USELESS doctors for the last four years – different every time – in an effort to stay with my clinic which was highly recommended because it is holistic. In an effort to find balance and health care that wasn’t too toxic and blah blah blah my cringing hipster self put up with sub-par health care, lazy disinterested locums and EXTREMELY high fees. (think $145 for 20 minutes one time!).

What finally made my mind up to leave was my last email exchange, with a new receptionist where I tried to book a long overdue appt (my fault not theirs) and they needed to charge me double because it was all new Docs since I was last there and it would be like an ‘initial consultation’.  I should have left the last time I got bloods and they didn’t bother to send me my results until I finally asked for them weeks later. I should have left the millions of times I said to various doctors that I was having issues – visible issues – with my skin, unexplained constant weight gain, stomach pain etc all since going gluten free – and all they did was tell me not eat yet another thing. I should have left when they took my kids off the books because they hadn’t been in in a while (and been able to charge us money) I’m sorry my kids are generally healthy. AND – you guessed it – it would have cost another enrolling fee to get them back on. So I finally did.

And my new doctor is great! In half an hour she did more for me – asked more questions and gave me more explanations – than I’ve had in years at the old place and I finally feel like there might be light on the horizon! Wahay!

So, I’m all revved up and raring to go (sort of, I mean I bathed and napped on Tuesday and nothing else and I have no guilt whatsoever) I am heading out there and running again (3 times this week plus boot camp so there), I’ve quit sugar (again) and am quitting booze (again) AFTER my grrl visits to help me celebrate tattoo finishing session on Saturday. Again, again, again. But you know – with the twin pronged approach with the Doc helping me medically I might actually see results this time! Instead of denying myself ALL THE GOOD THINGS and still feeling crappy which was my downfall last year. And I will try to blog too. Not just about the boring self-centered woe is me coeliac stuff but also about my sub-par parenting and fashion fails. You love it.

Now all I have to do is get through the last few days of the hell of school holidays (my youngest has not raised his voice above a whine in DAYS and this Mamabear is ready to snap) and settle back in to school and maintain good habits. Wish me luck!

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Misters

I can’t believe how fast the year feels like it is going all of a sudden!

You may be back at work? You may be still camping up north or similar, or if you are like me you are winding up slowly, getting your head back in the game and starting to put some hours in…

I have been lost in a swirl of house stuff, work stuff and Netflix ha ha. I have watched some bloody GOOD TV in the past couple of weeks and I can highly recommend Fresh Meat to anyone wanting a new Bingewatch – Vod is my new style crush! So cool. Can you guess which one she is? (a hint; it’s not the one in Overalls which may surprise you). I think I watched three seasons in about four days – new season coming out this year! Wahay! (can you tell I only really get to watch TV when I’m on holiday? I’m well behind what everyone is watching – don’t ask me about Making a Murderer).

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Anyways – I wanted to put a good word in for Misters in the city. I don’t need to because they’ve been around for a while and are well established for being GREAT but I finally managed to get there today with my grrl Alissa and it was SUCH a revelation to be able to eat ANYTHING off the menu. They are right in town (don’t tell the GD about my $22.50 parking! Jebus! I won’t be using that Wilsons building again – it cost more than lunch!) and get this – the Chef has Coeliacs! So they run a completely gluten and dairy free kitchen – which means – you know where I’m going – NO RISK WHATSOEVER of cross contamination! I went in cautiously – sometimes the combination of gluten and dairy free can mean lacking a certain taste factor but needn’t have been worried. I highly recommend. You should go there NOW and get something delicious to eat.

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          dscn4195          Misters new menu in copy

 

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Well it’s official. It’s folio season so that means I am falling apart. Cracked skin all over my hands and forehead, red and raw scalp, dry itchy skin all over my body (this is apparently a coeliacs thing) and I’ve got that manic energy that comes with knowing that all the boards are due REALLY fucking soon and I may be the only thing standing between complete and utter abject failure and a scrape though pass for some of my girls.

I heard myself shout somewhat hysterically to my seniors yesterday ‘I seem to be the only one with any sense of urgency here – where is your passion girls?!?’ I sounded like SUCH an Art Teacher cliché. The other in the room thought it was hilarious – especially as I barely even got a raised eyebrow from the class. (They think I’m cool – no really they do).

I actually secretly, not so secretly, love this time of the year. Eventually (I hope) the panic sets in with the art kids and they start producing work non-stop and with that production comes new ideas and extension and the ‘aha!’ moments that are vital to finish them off successfully. That’s if these guys ever get to that point.

But it’s not good for my adrenalin levels blah blah as per Dr Libby and her sciencey stuff about hormones and stress and stuff. We are probs all in the constant flight/fight/panic mode at the moment as we lurch from student to student trying variously to inspire, cajole, motivate, scare, soothe and push in to getting their work finished. I should be focussing on my belly breathing, slow walks and green tea in the morning.

But instead today I caved and inhaled half a pack of mini Whittakers almond gold.

Sorry Dr Libby.

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Remember that I said we were going to get the lads tested for Coeliacs in the holidays? We took them in to the lab in the first week and I went too, I was getting a general WOF and the lads were being checked to see if they had the raised levels indicative of Coeliacs disease.

All week I had been talking my eldest through the blood test, the reason for it and what would happen if A. he gave a positive result and B. if it came back negative. He has been the one of the two lads who we suspect – if either of them would have Coeliacs disease – it would be him. It is something that runs in families – you either have the gene or not and he seems to take after my side of the family with other physical characteristics – also he never seems quite right after a pizza or heavy carby wheaty food. But I could be reading in to it too because I’m hyper sensitive. Whatever – this is why we want them tested – to be sure.

Long story short – our youngest submitted to the blood test – albeit reluctantly – but he still did it. My poor eldest couldn’t make himself be brave enough – and he really tried poor kid. He tried to go first and set a good example but couldn’t, then he watched as his brother did it and tried again but couldn’t let the nurse put the needle in. Fair enough. It is scary when you are only young and as a rule he tends to make stuff like this massive in his head. We soothed him and cuddled him and said ‘no big deal, we’ll try again another time’ and eventually he stopped feeling shamed and was ok. We still have the form and he knows we need to do it so I remind him occasionally. Oops – that turned in to the long version. Sorry!

So, results thus far? Well our 4.5 yr old does NOT have Coeliacs! yay.

And it turns out, that after a term of not being very kind to myself and eating whatever the bloody hell I could get my hands on – not only am I carrying a little sugar belly around with me (I’m not even looking at my thighs these days tbh) but also all of my iron levels and vitamin B and all the rest have gone to shite again. Which makes sense as I am dragging myself round like an old lady at the moment.

As if I didn’t need any more motivation to get back on track. It’s a good reminder that I was doing what I was doing for a purpose – not just to torture myself – and that eating this way does actually have a physical effect. Not just the invisible gut healing stuff that seemed negligible in terms of how I felt.

So – Good news about the littlest lad and good motivation for me. Things I am grateful for.

144 – now with musical accompaniment.

Indulge me; as you read this, click on this link and have the song playing while you read. This song was my soundtrack coming down the hill towards the Harbour bridge, in the half-light of dusk, rain and wind whipping at the car, car lights all I can see, enjoying the drive home.

I have had a lovely day, mooching around the GF and Allergy show – it was busy! My friend Alissa and I are a well-oiled machine – we go in, do a loop – trying all the delicious looking samples. Then we do a second loop and maybe buy one thing? Usually not much because a lot of the stuff there you can get at the stupidmarket. I bought an apple pie because I haven’t had one in 5 years. I didn’t have breakfast because I knew I would be trying all the things. Many samples were had.

Then we headed up the hill to see Nana. I dropped the lads off at Mums because she is in a new place and its much bigger and crazier than her previous places. It is not nice to see her unhappy and in yet another facility, with yet another group of hard-working, friendly but stretched carers. She is fragile and she is our girl and if she was look-after-able at home we would have her at home but she isn’t and she doesn’t understand that and it breaks our heart.

I guess I was feeling a few feelings on the way home because my thoughts went to Eulogies. I don’t know if this is weird but I write eulogies in my head for people I love fairly regularly. I think about the best words to describe the person I love, the best way to honour their memory and the best way to say goodbye. Tonight I started with Nana, then the GD (mentally ticking off the songs he has booked in my head – Mark Lanegan and Tom Waits feature heavily) and then I laughed thinking about what people would say about me. ‘She was a dedicated teacher, a loving mother and a disobedient wife. She had a fabulous wardrobe, too many shoes to count and was bloody hard to feed’.

As we pulled in to our drive nearly an hour after we set off, the two lads asleep in their seats and the neighbourhood dark and smelling of wood fires – I reflected that I am happy and loved and lucky to be me. It is important to sit still occasionally and remember these things. It is easy to get bogged down in the daily busy-ness of day-to-day living, whole weeks rushing past like I’ve got no control and this weekend has been good for sitting still.

I don’t want to be a sad old lady at the end of my life wondering what I did with my time. If I do take after Nana and get stuck in my head, circling round and round in my memories, I want the bank to be full of love and laughter.

Now. Apple pie. Fuck yes.

140 – CAW – Running the gauntlet of dining out with Coeliacs

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Well, not if one is sugar free too. Or if it has been sitting in the cabinet on the same tray with the ‘normal’ food. Or if the server picks it up with gluten-y tongs. Or if it was cooked in the oven at the same time as something glutenous. Or if when they bring it to you – and this has happened to me – they have drizzled it with a sauce with gluten in it without thinking.

In fact, the more I learn, the more I realise that I can pretty much only eat out at those wanky Paleo or ‘clean eating’ only cafes that are popping up all over Auckland (thankfully).  Places where gluten is a dirty word – even to the normals – and they don’t cook with it, don’t stock it and don’t say the word – they hiss it. These places are great – granted that they can sometimes get a bit heavy on the coconut oil – but they are good for me because I can usually safely eat something labelled GF and know I’m not going to get glutened.

Unfortunately because being GF is so right now, and people are pretty sick of hearing about it; saying you are GF in a cafe or restaurant is bound to get the servers rolling their eyes and visibly gritting their teeth when you need to order. I always say ‘I have coeliacs disease’ (so they know I’m not just affecting it – I’m not a hipster I swear!) but I am sure that this just means extra hassle for the establishment and I know I get fobbed off on things where I could be being more careful. Because I’m a silent coeliac I could be getting glutened and not know. Which is pretty scary because cancer. So we don’t get out much anymore.

But tomorrow night I am going out for dinner with some of my Dean friends from school . We are going somewhere that I haven’t been before and I am going to have to ring them tomorrow to ask if they have gluten free options that are safe for Coeliacs. It is a Japanese restaurant and a good one by all accounts so I am hoping I can eat ‘off the menu’ and not have to have a ‘special’ meal made for me with all the delicious-ness taken out of it.

Wish me luck!

139 – Tuesday of Coeliac Awareness Week – Rolled oats – safe for Coeliacs or no?

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The role of oats in a gluten-free diet – has the evidence changed?

Although the addition of oats to a gluten-free diet has nutritional benefits and may introduce more variety in the diet, evidence for their use remains controversial.  The main protein type in oats is different to the gluten found in wheat and other cereals, however, oats do contain smaller amounts of avenin, a protein which is similar to gluten.

Recent evidence suggests that a subgroup of people with coeliac disease are intolerant to pure oats and also that the amount of avenin and the degree to which an immune response is triggered varies between different cultivars of oats. This new research may help explain why earlier research into the safety of oats in people with coeliac disease has had contradictory results. Most studies have also differed in the type and purity of the oats used and in study size and design.

Contamination of oats and oat-containing products with gluten continues to be a problem for researchers and also for people who choose to include oats in their diet. Contamination may occur during planting, harvesting, transport and processing of oats. Many countries are now working to improve agricultural techniques and industrial processes so that an uncontaminated supply of oats and oat products are available.

Current advice in New Zealand (July 2010) recommends that the consumption of oats and oat containing products should be avoided by people with coeliac disease.

“The safety of oats in individuals with coeliac disease has been extensively investigated. Some people with coeliac disease exhibit toxicity to oats. The Clinical Advisory Committee of the Coeliac Research Fund recommends that in Australia and New Zealand, oats should be excluded from a gluten free diet for people with coeliac disease.”’

Best Practice Advocacy Centre of NZ, 2011.

So what that boils down to is that at the moment, Oats are pretty much a no-go for people with Coeliac disease – even if you buy the really fucking expensive ones from the health food store that have been imported from ‘Murica and are plastered with ‘gluten free’ all over them. Because of the Avenin.

Which means that people with coeliacs and people baking for people with coeliacs need to think outside the box for chewy, tasty recipe fillers. I have a good brown rice porridge recipe that I use (and have posted before) and I know that some folks use both quinoa flakes and rice flakes in baking. I have not tried these but have them on my (long) list of things to do in the near future.

To sum up; People with Coeliac disease can’t eat Wheat, Rye, Barley or OATS.

And I miss porridge.

138 – Coeliac awareness week

Did you know that in New Zealand it is Coeliac Awareness Week this week? From the 18th until the 24th of May the folks over at Coeliac.org.nz are going to be doing their best to make people aware of what Coeliacs is, the symptoms of it and how to get tested; And they will be promoting the stories of famous (or world-famous in NZ) folks who also have Coeliac disease. So this week I too will be focusing on ceoliacs ‘stuff’ in order to talk the walk or some shit.

I’ll start by ripping some stuff straight from the Coeliac.org site;

What is Coeliac Disease? Coeliac disease is a permanent, autoimmune disorder caused by an intolerance to gluten which is found in wheat, barley, oats and rye. This intolerance to gluten causes the body to produce antibodies which damage the lining of the small bowel and make it impossible for the body to absorb vitamins, minerals and other nutrients from food. Both genetic and environmental factors play important roles in coeliac disease and coeliac disease is hereditary.

In 2015, it is estimated that 60,000 to 70,000 of kiwis have coeliac disease (1 in 70), however up to 80% of those are unaware they have the condition.

There are no specific symptoms of coeliac disease. Every body experiences it differently (remember I am considered a ‘Silent’ Coeliac because I don’t get a lot of the more unpleasant bottom-related symptoms) Click this link to read about some of the symptoms which may occur alone or in combination.

Here is a photo of a cat who doesn’t have Coeliac disease;

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Notice how happy he looks wit his bread hat – definitely not Coeliac. Lucky cat.

How did I get diagnosed I hear you asking? Was I terribly uncomfortable every time I ate bread? Did doughnuts make me dizzy? Was I exhausted, bloated and fading away? Well, yes and no.

I went to the doc for my usual half yearly WOF. I try to go regularly to get my iron levels checked, anything else looked at and my general paranoia about dying of something random and possibly-parenting-related eased. This time it wasn’t my usual Doctor, she had left the practice and they had to give me a locum. It turns out this was a good thing because she wouldn’t be fobbed of with ‘Of course I’m tired, I have two small children, a fairly hard-core job and I get up every morning and go for a run! YES I am tired all the time but that’s got to be normal hasn’t it?’. Not so said she, and what are your iron levels like she asked.

Well, they were and have always been fucked. No matter how many beasts were slaughtered so that I may dine upon their iron rich limbs, no matter how many leafy greens I ate, no matter how many bloody iron pills I took; I was always very low in iron. Under 20 low. (That’s really low btw). SO on the basis of my general exhaustion, foggy brain and low iron she had me tested. And of course here I am.

That was in March of 2012. My bloods were so high that I was Coeliac enough for three people so she had me booked in a for a biopsy straight away. I then had to wait until September for the actual procedure (I tell you what, being unconscious for that was the best 1.5 hr sleep I have had in ages and since, oh to do it again just for the shut-eye!) and it came back confirmed. The villi in my gut was non-existent and the damage was extensive. I thought it looked pretty in the photograph but the medical people were horrified. Very bad they said.

And that’s me. I have been gluten-free since September 2012 and will be for the rest of my life unless they develop the mythical vaccine.

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117 – and it drags on

I’m on a new diet. It’s the ‘yes I think I’ll have breakfast today, ohhhhhh well… maybe not’  diet. The very thought of food can make me retch or cramp up. Or I get a very distinct and specific craving for something and can’t stomach anything but that thing – for the last three days it’s been GF any-citrus cake and the grumpy Dutchman dutifully got me some – of course I didn’t want it when he finally got home. I am exhausted and manage small efforts of normality followed by long periods in bed.

I actually got to work on Friday. I felt better enough on Thursday night to be optimistic, planned my lessons, got my clothes sorted and packed my lunch. Got up and felt a bit blah – but that’s understandable. I ended up having to take my breakfast with me because I couldn’t finish it – this should have been a clue really. I’m a girl who finishes everything on her plate and then follows the crumbs back through to the kitchen to see if there’s anything else I can finish off. Anyway, breakfast never got finished, and I lasted as long as recess, then home to bed.

I have been told by fairly reliable sources, that Gastro bugs last longer in coeliacs – this doesn’t seem fair really – we already have gut issues – why add to the drama? But it makes sense. Coeliacs is an autoimmune disease and it makes sense that anything else would knock us on our asses. No ‘reserves’ to help up back up on to our heels you see.

I have spent since Tuesday night in and out of bed, sleeping, being impatient with the lads, not eating OR eating a whole dinner last night and regretting it immediately. I am shattered and can’t concentrate on anything for very long. It sucks balls. I dragged myself around the zoo this morning – it was my bloody idea – with the three Dutchmen but it wasn’t as much fun as it sounds.

My four year old is loving the captive audience though. He is already a non-stop talker – like actually non-stop and if it’s not words it’s his own special gobbledygook – and I don’t have the strength to fight him off at the moment or get a word in edgeways. He spent Friday evening bringing me a drawing every five minutes until he ran out of paper. It was quite sweet really. He comes to the bed and ‘announces his crimes’ at me. For example – he just came in clutching a ramekin and asked if he could have milk. (There has been a ban on milk anywhere but at the table because of the amount that ends up on the carpet). I said no, you know you can’t have milk. ‘Is that milk in the ‘cup’?’. ‘YES!’ he shouts gleefully and bolts – dripping milk as he goes all over the carpet – confident that I am not going to follow him.

I’ll show him. I’m going to text his father.

Day 102 – Landed in Chch, cluck cluck cluck

Mmmmmmmmm Baby snuggles. So good. And she is a real little snuffler – like a little hedgehog. My poor niece (and sister and BIL) has suffered with reflux and terrible wind since birth. They were going out of their minds with a screaming baby until a couple of things happened. A. The pediatric nurse they see suggested that maybe she was plain hungry – my sister can’t make much milk so they have introduced bottle feeds as well and B. They started giving her gripe water and reflux medicine to stop her oesophagus from burning. She still gets terrible wind though poor kid.

Now she is finally putting on weight – much to everyone’s delight – and sleeping through the night (oh my god my kids STILL aren’t sleeping through the night) but she still has tummy stuff. Kris is off the dairy and spiceky food but baby still is not having a good time.

I am very tempted to mention the thing about gluten upsetting babies tummies when they are wee if they are coeliac….. but I won’t. Ha ha. Anecdotally it seems that every child diagnosed on the Coeliac Disease NZ page had funny tummies when they were little – and when Mum took out the gluten they felt better.  But my sister is very proud of the fact that she doesn’t have coeliacs – being related to me of course but not by both parents – and she will not be happy if I suggest there could be anything there for her precious little angel. Fair enough. New mums get a LOT of unsolicited advice and opinions and that’s not my job. I am here to help.

I got to have my first alone time this evening when Kris took her man to the airport for his trip to china. We had some hairy moments when there were nearly tears but I remembered some of my windy baby holds and we powered through. She’s so wee and cuddly and I am SO in danger of getting super clucky.

The temperature is set to drop here in Chch overnight so we’ll see how I survive!