Lipgloss, nail polish and other stuff girls want.

When your little girl comes to you and says, ‘mummy, I want nail polish, just like you’, do you feel proud or all mushy inside or does your heart sink?

Things are not so straight forward when you have a gluten free kid. Nail polish, like a gazillion other things, can contain gluten. Nails, are on your hands, and you use your hands when you eat bla bla etc, so nail polish must be gluten free. You cant just go out and buy a nail polish and hope for the best. You can google obviously, and you will find TONS of lists online saying which brands are ok, but if those results are over 6 months old you have to consider the fact that the recipes may have changed. I tend to google for companies that have proper gluten policies, rather then just one product thats gluten free. You could also go for one of those companies that specialise in making only gluten free products, but the truth is that they are expensive, and do other girls and women want to have just 1-2 companies to choose from? Obviously not.

So we went shopping, for lipgloss and nail polish. I already knew I would go for essie with the nail polish and I was hoping to find a lipgloss once there. Armed with my google results and my smart phone we found 2 awesome people in the makeup shop who helped us with the lipgloss, we ended up with a Loreal one that cost well over 100dhs/zloty. No cheap barbie stuff for this little girl! haha.

As a parent its important to me that my kid doesn’t feel super different, in the case of makeup (which she will absolutely not wear fully until she is in her teens thank you very much) it means mummy has to help, that she cant have one of those beauty pouches from the toy shop full of glitter and raspberry flavoured stuff. Thats ok. Putting on some lipgloss and wearing nail polish every now and then is part of growing up, so I will buy the right stuff and thats that.

In our family everything is ‘the right stuff’. All our soaps, shampoos etc are gluten free. Always.

People are always asking me to make lists of the stuff we use. The truth is Im not so comfortable with this, because information can change so fast, and if someone used something because I said its safe I wouldn’t be able to sleep at night! So just remember when you check something, don’t trust just one source and make sure the info you are getting is current. If you have questions pop them on the blogs facebook page and ask, or ask here 🙂 I also pin LOADS of body and house stuff on my pinterest boards.

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-Linda

 

 

Blood tests, ambulance rides and extra oxygen.

Well, I guess I knew it already as I was writing my last blog post…. we got to the clinic and they wanted to call an ambulance to send us to hospital straight away (in my opinion a slight over reaction on their part). I refused the ambulance (why scare the children more then needed?) and drove home to grab bags and iPads and food. Dropped son at neighbours and went to hospital where we were admitted.

This latest hospital stay was actually the smoothest one yet, maybe because I am getting so used to them? Or because I know exactly what we need? I actually have a bag thats always partly packed in a wardrobe, likewise we have a small bag partly packed for son. After this latest stay the bags will be improved further, but they sure do help a lot, especially if someone else has to go to my house to get stuff.

The hospital stay in itself was eventful…. Every test they could think of and then some has been done. It seems Celiac kids haemoglobin is high, her body responding to oxygen levels that are too low and trying to adjust them….. clever on her body’s part, but not good for her. The pneumonia was also a bit of a mystery, a strange kind, very severe, not the kind of pneumonia ‘normal’ people get. Well, my daughter is anything BUT normal, haha (that haha is mildly hysterical by the way). Its almost as if she enjoys playing games with science, because her test results are always a bit strange and baffling.

We were sent to a different hospital to be tested for Cystic Fibrosis. Its a sweat test. Above 60 is positive and below is negative, but a negative should really be below 30 or it needs to be investigated further. Celiac kids result was 49.

I am calm. Hubby is stressed. And I remain calm. Sortof. Celiac kid is super exited because the trip to the other hospital was by ambulance, and the super cute ambulance guy gave her both lights and sirens the whole way after she asked to hear them! Haven’t seen a smile like that in ages!

Normal people don’t GET this many pneumonias. Is it still her RSV as a baby giving us crap or is it the celiac and the crappy immune system being silly? At this point I think we need more answers, because if my counting isnt completely off we are now at something like 11 pneumonias, a handful of bhronciolitis and countless upper respiratory illnesses.

I actually think we struck gold at this latest hospital visit, because they are as concerned as I am, and I didn’t have to be assertive (read bitchy) in the slightest to get some action.

We were admitted on monday evening and they finally let us go Saturday evening after some straight talking to from hubby. They just cant feed a celiac kid in a hospital here, and if you really want someone to get better they need proper food! Thankfully her oxygen levels weren’t super low so she was only on 1-2 litres until Friday then she managed ok without.

We have been back to the hospital daily since. She is having her last antibiotics today. Next week we go to a mountain town that has a specialist hospital to be admitted for a few days, there they will check her lungs properly and hopefully before they let us go we will know more definitive answers as to why she keeps getting this sick.

We did the Cystic Fibrosis genetic test too, Im guessing they will repeat the sweat test next week also. The genetic test only checks for the more common genetic mutations but around 90% of Cystic Fibrosis should show up in this. To be honest I don’t really trust the sweat test anyway because I’m so used to my daughter having results that aren’t ‘normal’.

I wasn’t really going to write about this at all, but then I figured that its probably good to write about it, because no matter what the results are eventually, our story can probably help others. Much of the information about cystic fibrosis is pretty scary, but to be honest, if she does have it, then we already lived with it for 5 years anyway, so putting a name to it (whatever it may be) can only be a good thing so that we can help her. We are obviously hoping its something else, but lets see.

Trying to explain now why we are going to hospital without being particularly sick has been harder. Then the question ‘will they poke me?’, which breaks my heart, because obviously they will but I so don’t want to tell her this and make her cry! By poke, she means needles. She is still bruised black and blue on her arms from the IV going in last week, her veins kept bursting and it was only attempt 5 that was ok!

Anyway, thats whats going on with us. Hopefully you are all having a better month then us.

I have decided to stay as positive as I can, feed the kids the best and most nourishing food I can think of and just breathe deeply as much as I can. Me losing the plot is hardly going to help.

– Linda

My Celiac Awareness Post

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May is for Celiac Awareness.

In the UK Celiac is spelled Coeliac, same in Australia and New Zealand. In the UK they have Celiac Awareness week, rather then the full month they do in the US. Its in May, so for me, May is for Celiac.

Celiac Awareness is not really needed on a blog like mine, because to me, Celiac Awareness is about reaching those who are NOT here on this blog. Those mums endlessly walking their screaming (undiagnosed children), those dads who scratch their elbows with a knife because their (undiagnosed) DH is itching so bad. The women who have been trying for years to become pregnant. Those who struggle daily with stomach issues and put it down to IBS or stress (yeah… could be undiagnosed celiac).

Of course, not all people with stress tummy or an itch or whathave you have undiagnosed Celiac disease. But the numbers speak for themselves, in Europe something like 1 in 100 (slightly less or more in some countries) have Celiac, in The US numbers used to be 1 in 133, thats now thought to be incorrect and latest figures show similar to European figures. And how many are diagnosed? Hardly any. Estimates say that somewhere around 97% of Celiacs in the US today could be undiagnosed. In Europe they talk about numbers around 80% (varies from country to country).

So that pretty much means most of us know at least 1 undiagnosed Celiac. Maybe they have classic and visible symptoms, or maybe they are walking around with nothing other then slight anaemia or feeling a bit depressed. Thats the thing with Celiac. You can have diarrhoea or be constipated, you can gain weight or loose weight, you can have aching bones or depression. There are 300 symptoms to date associated with Celiac disease, and a sufferer can suffer only one symptom, or 50!

The people who need to know all this are not Celiacs, the people that need to know all this are people who may never have heard of Celiac!

Then the other part of Celiac awareness, the one that explains to the world that Celiac is an autoimmune disease, not a fad. Not an allergy.  The one that explains what gluten actually is. A protein, found in wheat, rye and barley and all products thereof. The one that talks about cross contamination, and explains that one breadcrumb is enough to hurt someone with Celiac disease. The one that explains that although we may not suffer anaphylaxis, there is long term damage to our systems every time we are exposed to gluten, and a Celiac who keeps being exposed to gluten can suffer other life threatening diseases such as cancer.

Eating just a little bit of gluten, is not an option. Some may not react to ‘just a little’, but the long term damage on the inside still occurs.

I am asking you all a favour today. Help us spread this awareness. Help us – the Celiac community – to spread this awareness as far as we can. Please share this post, or one of the many other Celiac awareness articles out there. If you see it on twitter or Facebook, like it, tweet it, share it. Help take the awareness further.

I also have a challenge for the bloggers out there, the non gluten free bloggers. Please, if you can find the time, write a post about Celiac for Celiac Awareness Month. YOU can reach exactly the person who needs to read it. I already gave this challenge to my small expat bloggers Europe group, and two lovely ladies accepted the challenge. I will be sharing their posts next week, along with yours if you accept 🙂

MAY! Is for celiac Awareness. May is when my own little Celiac was born. How oddly appropriate 🙂

Linda

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Moving time! (again)

What a week!

Friday morning last week we were in Poznan, Friday evening we were in Wroclaw. By Sunday I had somehow magically managed to unpack everything! Then a frantic whizzing from place to place to sort out the school, kennels for dogs for our trip, food shopping, food shopping research (gluten free peeps know exactly what I mean!) etc etc.

We somehow managed to pick a great area for ourselves without ever having visited (thats how we roll, haha). Its great with tons of greenery, kids and barking dogs.

Im not sure what it is with barking dogs here…. if my dogs bark they get told off, but it seems here many people have dogs to deter from break-ins, and a quiet dog sleeping indoors obviously doesn’t deter much, so dogs are left stood in gardens barking. Drives me slightly bonkers, but it is what it is. At least I feel totally warranted to smile smugly at all these dog owners that MY dogs are so well trained and don’t bark.

We found a great little shop that sells organic produce and some freshly baked gluten free goods. I was to scared to get any of the baked stuff because even though the lady assured me it was baked in a gluten free kitchen you just never know. I need my hubby to go and ask her all the tough questions in Polish. But the produce! Gigantic organic apples that tasted like the apples from my childhood, I cant wait for summer when all the locally grown berries will come!

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The shop is called Awokado – delikatesy ekologiczne, they have a facebook page (opens in new window).

Slightly further up the same road there is yet another eko (organic) shop, a family farm and the produce is sold in someones garden! Eko eggs and veggies. Im in HEAVEN 😀

I have yet to find where the shops selling all the breads are hiding, so far its all schar. Im guessing I need to find another delikatessen. In Poznan we found most of the breads in normal supermarkets. Im sure I will find all what we need eventually.

Few more days now then its Dubai time! Cant wait. Also cant wait to come back and for kids to start their new international school where people speak only english. Happy happy happy! 😀

-Linda

 

The question finally came….

‘Mummy, when Im a grown up, will I be able to eat gluten?’

I knew it would probably come, one day, but yet when it did I wasn’t ready. I didn’t expect to feel so sad, I didn’t expect to feel so bloody hurt, for her!

We have had many questions, and statements, and she’s so smart, so clever, she ‘gets it’. ‘Is autinka Celiac like me mummy?’, ‘When big brother was a baby he could eat gluten right?’, ‘I know big brother can eat gluten, just not at home, because we dont want gluten in our house‘. Etc etc etc. So why then did the question surprise me? And why on earth did I feel so sad…?

I don’t miss my relationship with gluten, I haven’t touched it for almost as long as she has, the last time I had it I felt awful, so its no big deal for me. But Im an adult. I got to grow up eating what I wanted. And although she is so amazingly cool with everything right now, I am in mourning for the things she wont ever get to do. She wont get to do the spontaneous pizza at midnight after the cinema, the kebab after the pub, the walking past a greggs the baker and buying a bag of donut holes and scoffing them all in one go, instead, she has to grow up and be careful, always prepared, plan everything, and although we have a great life and we are OK…. its obviously not going to be easy for her growing up, being different in your pre teens and teens is what we all strived NOT to be.

I hope by hanging out with as many Celiacs as we do that she can continue to feel that what she has is as normal as freckles or a wonky toe. I really really hope so. But deep inside I am so sad for her 😦

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Gluten free food in Europe is not always gluten free…..

We learned to be gluten free in Dubai, we learned to be gluten free in a place where there was no bread available to buy in the shops (at that time), hardly any biscuits or crackers or cereals available at all, and what WAS available (back then) was gluten free, gluten free as in as close to 0 gluten as you can get, in european terms, ‘naturally gluten free’. The sucky thing is, many countries now produce gluten free foods using wheat starch. Yeah, I know, makes zero sense. Wheat = gluten, so why the hell are you putting it in my gluten free food? I don’t care how hydrolysed and processed it is, to me its still gluten, and you know what, it IS! Its STILL gluten, just happens to be below 20 ppm. But think about it… if its 15 ppm, and you eat it every day, and then eat crackers and bread and pasta and a few other things then holy CRAP are you really eating gluten free at all?

In our case the choice is made easy, because our celiac kiddo reacts to wheat starch, she reacts to traces, she reacts to things that are not as close to 0 gluten as you can get, and why shouldn’t she? She has CELIAC!? All those people who eat the pretend gluten free foods and feel great, I wonder how they would feel if they ate only 0 gluten free food….?

Anyway, back to why they put this gluten free wheat starch in food. Heres the deal. Gluten means GLUE in latin, and thats how it works, when you bake or cook with gluten, gluten is what binds things together, the glue that makes your bread not fall apart (like a gluten free bread might..). Wheat, is CHEAP. So for manufacturers it makes sense to use GLUTEN in our gluten free foods, because the alternatives are far more expensive. But who is paying the price… really? Will research in a few years come far enough to ban wheat starch in gluten free foods? I hope so!

Please note, there is wheat starch and there is gluten free wheat starch, so if you are a celiac wheat starch eater, make sure you ONLY eat the one that is labelled as gluten free, its not 0 gluten, but it is at least below 20ppm. 

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Finding gluten free food in Poland.

Gluten free food in Poland is generally found in specialist stores, health food shops or delicatessens. In larger towns you will find some basics in the supermarkets, and mostly it will be in its own (very small) section. Piotr i Pawel has more then most, Alma usually has a few things, my local Intermarche has TONS, but you can usually find bits and bobs even in Carefour and Real and Auchan. As mentioned previously on this blog, tesco has nothing.

I live in a small town outside of Poznan, and even in this town there is a small delicatessen selling gluten free goods, and unlike other countries, it is NOT super expensive.

– Linda