One of those mums…..

So I was sat on twitter yesterday looking for interesting new people to follow, I looked at the ‘who to follow’ suggestions, and it was ALL allergy advocates, Celiac tweeps and egg allergy people. It suddenly dawned on me that I have become one of those mums. I don’t want to be one of those mums. I don’t want to have a kid who has egg allergy or Celiac disease, I don’t want to have to ask questions everywhere we go and carry a bag with food and baby wipes, I don’t want to wipe down the table every time we go to a cafe, I don’t want to be difficult at parties when I ask someone to please not touch my daughter with cake all over them….

But you know what….. I do all this. I do it because I have a child with Celiac disease, I have a child with a newly diagnosed egg allergy. I didn’t ask for any of this, and neither did she, but I do all this to keep her safe, because its my job to keep her safe. Im not doing it to be difficult, to annoy, to be one of those mums…..

I would give almost anything to not be one of those mums….. we are not in this for attention….. we scream and shout and tell and advocate for our children, as Im sure any mum would, to help keep our kids safe. If you love someone all the way to infinity and back, then you would do pretty much anything for that person wouldn’t you…? So here I am……

One of those mums.

1422255

 

Lunch box staples

img19t

You all know I write most of the content for GlutenFree UAE right? I was looking at some of the stuff I have written for there and thinking some should be moved over, but not only is it time consuming, but it already exists 🙂

Having said all that, I know that GF lunches are always a hot topic when gf mums get together. Its not easy doing a gf lunch thats interesting and nourishing day in and day out. Some lucky mums, like those in Sweden get lunch provided for their kids in school (yes, even gluten free!), but even those kids sometimes require a packed lunch.

So, about a year ago I did a small series of my favourites over on GF UAE. Do go have a look, each one opens in a new window.

Enjoy! All of these contain egg obviously, I need to rework them and come up with new staples!

For more ideas for lunch boxes, don’t miss out on My top 10 tips for a gluten free lunchbox! 

-Linda

Eggs and dogs and underwear.

Its been a while. Ive been feeling very uninspired and lazy. Frankly, its been to hot to THINK. We have had days with 33 degrees, which is not so bad actually compared to Dubai, but in Dubai there is AC everywhere! Here, the closest I get to AC is standing in front of the open fridge looking for snacks. Me and the kids have all taken to wearing just underwear in the house.

(Funny that, apparently Polish people do a fair bit of walking around in just their underwear, lol,  Polish Housewifes facebook post , my friend Brooke has a whole blog post coming on the subject )

We had a ton of new medications given to us for Celiac kid, we are getting closer to answers. Seems her lungs, the bronchii (bhroncolii?) bits, are constantly inflamed, when it flares up and gets even a tiny bit worse, pneumonia or upper respiratory infection follows. We also now know that her bone pain is highly likely to be linked to her over use of steroids. Dr has her on a new medication and we are hoping to slowly faze out her other two steroids.

Her allergy test results are also back, and they say dogs and eggs. Both a total shock. Dogs, because although we have dogs, our dogs dont have the dander normal dogs have, they are a non shedding breed and most people with pet allergies tolerate them very well. Doctor also seems to think its wrong as nothing showed on dust, yet she reacts strongly to any amount of dust. More testing needed in that department. But EGG! It all makes sense once I start reading…. egg allergy can cause wheezing, respiratory issues etc etc etc. So on the one hand Im numb and a tad devastated that she can no longer eat eggs, but on the other hand, I feel a little like we just won the lottery, because maybe, just maybe this is the answer we needed, and maybe, just maybe, her lungs will finally be able to improve!

We have also consulted a naturopath, who also happens to be one of the ladies I met with just when I started GlutenFree UAE, her daughter is gluten intolerant. She gave us some great advice and I hope to share all this with Celiac kids Dr – who seems very open minded – and hopefully we can all work together to help make this awesome shining star of a girl feel a bit better.

Celiac Kid’s comment when we told her about the eggs was ‘but mum, thats so lucky, I don’t even like eggs!’ , its true, if she knows something has egg in it she wont eat it, the only hard blow here is ice cream and pancakes. Awesome kid that she is she is already getting stuff out of the drawer asking me if she can still eat them, ‘has it got egg inside mumma?’.

We still haven’t been on our holiday, but should be off soon, then school starts with all the work that comes along for us gluten free mums, new classroom, teacher etc. I never shared my school letter last year, I will be sure to do so this year. I edit it yearly to suit our needs so have a ton of versions already 🙂

Off to make glutenfree – eggfree cheese rolls now 🙂

Have a fab day!

Linda

sad-egg

Please note, its the egg thats sad, not us! 😉

Shopping #glutenfree, then and now.

Yes I hash tagged the title. Is that bad? I guess Im lazy, now when I share it on twitter it will have the hashtag ready made! 😉

organic_food_shopping

I talked about shopping before, shopping for food can become a huge part of a gluten free persons life. We are a family of 4 humans, 3 dogs and 1 bird, all who eat gluten free! Its my job to shop for us all.

The first shop after diagnosis is a far cry from how I shop now. Its a far cry from how I shopped a year ago, or even 2 years ago. We all eat wheat and gluten free. Yeah, wheat free and gluten free are not always the same thing although I really wish they were. many so called  gluten free items out there are a no go for us.

So how do I shop? How long does it take? How many shops do I need to go to?

At first Id go to 3-5 supermarkets a week, the shopping would take anything from 30 mins to 2-3 hours. I rarely take longer then 30 mins now, I don’t read labels much, partly because they are in polish and I cant, and partly because I have cut out most of the processed junk we are so used to eating. Cutting out the processed junk means I no longer need to go in most aisles!

I go in the fruit and veg section, the meat section and dairy section, I take a quick peek in the gluten free section, and occasionally buy something. My processed foods are few and far between, passata, non gmo european corn, tinned chickpeas, artisan gluten free sausages, organic muesli bars (gluten free obviously), rice cakes and a few other bits and bobs. I do this every 1-2 weeks. Then I do small top up runs in my local fruit and veg market and a meat top up dash when needed that takes a few minutes. I only buy fish frozen, as fresh is not that easy to get here.

Thats it, khalas, done!

Do I still obsessively go in shops to look what they have? Sure, do I try new gluten free things whenever I see them, NO! Why? Because I don’t really feel we are missing anything in our lives or pantry. I try new products only if its a product we need. I am such a saint. (Of course I haven’t mentioned the jelly beans and occasional marshmallows and chocolate that sometimes slips in, that would make me sound far less healthy and saintly, but hey, this saint is human, and sweets don’t count, as long as you only eat them on Saturdays…right? 😀 )

If someone had come along 3 years ago and tried to teach me to shop how I shop now, I am not sure how I would have taken it, things were still so new, maybe I needed to go through that fase of trying everything to really figure out we didn’t need it, maybe I would have embraced the knowledge and saved a lot of time, not to mention money!

I have learned so much about gluten and pesticides and CRAP in our foods in the last few years, that even if Celiac was cured tomorrow, no WAY would we go back to eating how we used to. I have always loved cooking, always liked and preferred to make things from scratch rather then a packet, my ingredients though have changed so much.

I would love to hear how your shopping habits have changed and if there is any advice you wish someone had given you at the beginning? Or do we need to learn it by living it?

-Linda

(I share a ton of rantings and food tips on facebook, join us!)

 

Celiac Awareness doesn’t end with May.

Image

So, Celiac Awareness Month is over. But for some, for us, the need for awareness never ends. For us, Celiac disease is very real, we live it, daily. For us, the need for safe gluten free foods is a huge big deal. For us, the need to educate about safe gluten free foods doesn’t end when May does. With so many people ‘jumping on the bandwagon’, with so many people believing gluten free is a fad, with so many establishments preparing gluten free foods that aren’t really gluten free, the need for awareness is on going, every day, 365 days a year.

I want to say a big thanks to a couple of the ladies in my bloggers group who wrote about Celiac during May, Lois, from a Polish Housewife – post here – and Brooke from and two makes crazy – post here – Thank you both so much.

I also want to thank all those who spent the month liking and retweeting tons of my stuff on twitter, Im there as Linda_FB , find me 🙂

So I will keep spreading awareness in any way I can, and next May I will ask for all all your help again.

THANK YOU!

Linda

My Celiac Awareness Post

may0aisfor0aceliacawareness-default

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

Support me on Facebook pretty please by clicking the like button here 🙂

Celiac, Dubai, School and another Pneumonia!

Image Boy do I owe you all an update, its been a month! Admit it, you couldn’t sleep at night for missing me? 😉 Right, so we went to Dubai, had an awesome awesome holiday. Got a sunburn, went to Wild Wadi, splashed around on the beach. Celiac kid had a wheeze by day 3, so once again it just reconfirms how right our decision was! Being in Dubai was so ‘normal’, felt like we never left, so comfortable being around those people we have known for so many years. I miss having friends like that here. It will come, Im sure. Anyway, back to Wroclaw, picked up our puppy and then Big kid started school. 1 week in he says he loves it JUST AS MUCH AS HIS SCHOOL IN DUBAI!!! Woop Woop! RESULT! After the horrid experience in the last school he deserves the best school we can possibly give him. I need to know that my kids are happy and loved whilst in school. Fingers crossed and touch wood this school keeps on delivering 🙂 Celiac kid had her birthday! She’s 5, FIVE! How the hell did this happen? My baby is a big girl? Then yeah… the crappy news. Celiac kid coughed a few days ago, just one cough, but I looked at her and I just knew what was around the corner…. the day after I ended up taking her to our landlord’s clinic (our landlord is a gastro and knows Celiac well, what luck!?), he helped me find a good Dr who speaks English and works with kids. I must say, so far the Dr is wonderful. The same afternoon we saw her, and although Celiac kid just had a slight cough and no fever (yet) the Dr listened to me and believed me. Examination confirmed a bad right lung, and by evening her fever was reaching close to 40. Thank God we acted so fast. Saw the Dr again yesterday and the entire right lung is very bad, but luckily her left lung is clear and because of this her oxygen levels have managed to stay high enough for her not to be admitted. Obviously any other kid would be admitted, but again, the Dr has listened to me and agrees Celiac Kid is better of at home. We have remained in phone contact by texting every few hours. Best part though, this Dr is already sitting at home doing Celiac research and learning more then she knows now, and is finding us a string of expert so we can investigate every avenue there is and make some kind of plan. Its not fair to keep having these pneumonias. I am no longer able to tell you how many she had…. awful. Anyway, once she is better there will be testing for other allergies, lung scans etc, Im actually at this point thinking finding something may not be so bad, because at least then you can try to treat it! Im glad I decided to not let her start school til September, this time was meant to be spent growing and getting stronger, not having pneumonia number 6 or 7, but hey ho. Im feeling positive despite all. How can I not? A great landlord, a great house, a great and understanding Dr, ok oxygen levels, a puppy!  We choose our reactions to some extent, and I am truly grateful for what we have and that I haven’t lost the plot. Every time the sh**t hits the fan and Im able to stay with my feet firmly on the ground is a victory in it self. I have blog posts waiting to be written, Celiac Awareness one with some great links from lovely blogging friends, and also an Airplane food one. Soon, One day InshAllah! -Linda

3 years since we were diagnosed…..

three-years-old-miml

I cant quiet believe its been three years…. I don’t remember the exact date, I remember the hospital stays, the dehydration, the coming home after, the vomiting, the diarrhoea, the wasting away, the screaming. I remember the heartache, I remember being absolutely numb. I remember not functioning for any other purpose then to hold my so obviously miserable daughter. I was at the end of my tether…. she was to young to tell me where she was. We were all suffering on a daily basis. Our life was awful. I remember the April school holiday, searching every shop in Dubai for gluten free foods, I remember learning to bake.

Its been 3 years since we got our lives back. Its been 3 years, since we were able to finally, on some level, relax.

Our life is talked about in terms of ‘before diagnosis’, and ‘after diagnosis’. Before diagnosis it was almost like we were somehow paralysed. There were days when I would walk with her for hours, and if I stopped, at any point, she would scream. So I would do circles in the mall, never stopping, just walking. I say WE were diagnosed, because Celiac disease affected all of us so very much, and still does. This is our life, as a family we are in this together, and we are a Celiac family.

Its been 3 years, since we got our lives back.

The road is still not always easy, but we do our best. Incidents of contamination are far and few between as we have all learned to avoid it best as we can. The battle now is with weak lungs and a crappy immune system that took a hard hit from a delayed diagnosis.

The battle now, is to help teach the world about Celiac disease.

Its been 3 years, and it feels like forever.

I cant remember us being a ‘normal family’ before diagnosis. Sure, we had our good days, and bad, but its only really since diagnosis that life has made sense. If someone is going to scream and cry fore a whole day, then its really better and easier for those around if they know why.

Its been 3 years, and we just keep smiling 🙂

-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 😦

Image

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. 

I am on facebook! Give me a ‘like’ if you like this post 🙂