Monthly Archives: March 2014

The question finally came….

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‘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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Life in Poland – pretty awesome at times :)

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People are often asking me about life in Poland, and by the way they ask I kindof know they expect it to be terrible. Then I reply to them and say, fine, great actually, and I can hear the surprise in my own voice! Not because I expected to not like it maybe, but I didn’t really expect to like it either. So fine, we have had some teething issues, Ive had stroppy people refuse to serve me in shops as I don’t speak Polish, and the security guards stalking my every move in shops drives me bonkers (do I LOOK like a thief??), but I’ve also met a whole ton of AWESOME people. In 6 months Ive already made friends for life! Lois from Polish Housewife, an American expat here in Poznan (go check out her blog!). I met Lois while searching for Poznan International Ladies Club. Great to meet a fellow blogger and have someone to speak native english speaking english with! Then the PILC ladies who have all been awesome as well. I never thought I was a ladies Club kindof girl, but I guess I was wrong! What a great and fast way to make friends. Then there was a note sent home in my sons school bag, ‘Hi we are Mrs I and Mr P, our sons like each other and want to play, CALL US, we speak english!’, possibly the awesomest note I ever received!

Then the random strangers in the post office line who overhear the cashier saying ‘Nie’ to my question of whether they speak english and offer to help translate. The lovely people in shops who speak not a word of english but who go out of their way to help you in any way they can! The awesome insurance guy who filled out all my claim forms for me as it had to be done in polish, and even got me coffee while I waited! All these people, they make Poland great. On top of that, the air, the trees, the green, heck, even the RAIN makes Poland pretty darned awesome at times.

Yes there are minor culture shocks, the old historic buildings which wow me, and makes my son – who has yet to learn to appreciate the beauty of old things – wonder why they aren’t torn down, ‘they are so old and dirty’ he says! The graffiti – everywhere- the blatant poverty in some areas. The drunks on the street (Don’t get that in the Middle East!), but I am discovering, liking, enjoying.

Im looking forward to summer, to exploring the different areas and going for a stay in the gluten free hotel in the mountains. An article in a Swedish newspaper the other day stated Poland has some of the best beaches in Europe, I cant wait to see those too!

Yes, I know I used the word awesome an insane amount of times in this post, but I just wanted to share some good stuff along with the bad 🙂 now, back to house hunting for me!

-Linda

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

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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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Aili’s story

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AiliSo Im sat here today, doing some work on the GlutenFree UAE Facebook page, and I decided to re share everyones personal stories. These stories make my heart ache every time I read them, they make me more determined then ever to keep going, to stand up, whenever I can and keep talking about Celiac disease and gluten. While there are still doctors out there now knowing the signs of Celiac disease, my job, and the job of others like me, is not over. We need to keep at it, keep talking, keep sharing, keep liking each others blog posts and keep on nagging everyone around us. Because although we may at times seem like a broken record, there are so many people out there who still need rescuing from the hell they are living in. We were rescued, we should have been rescued earlier, I cant change that, but I CAN try and change it for others.

So here it is, the story I cant rewrite ever again because it pains me to much to even read it. But this is Aili’s story, and ultimately also mine.

This is Ailis story. Aili has Celiac disease.
Aili was born in May 2009. The pregnancy was difficult requiring hospitalization for 1 month, and when she arrived in the world she was 6 weeks early.
Aili was never an easy child, obviously at first we put it all down to her being premature, then as she got older she earned the titles difficult, stubborn, hot tempered, bad sleeper etc etc. The list grew by the day.
She had endless problems with constipation, at times she would go over a week without doing a number two. Again, we put it down to her being premature and her digestive system not having matured enough, so struggled on with baby massage and sleepless nights. When it was time for weaning she point blank refused most foods. I dont think she actually ate anything properly until she was 1, and even then she ate very little.

Our older child started school when Aili was just over 1, and then the illnesses started, to many to even mention here, so we will stick to the big ones only. Victor who had never been to nursery seemed to pick up every single bug, and offcourse everything was also passed on to Aili. We had tummy bugs and colds with endless coughs, then Victor got pneumonia and was admitted to hospital for 4 days. Hugely stressful time as a parent. Less then a month after Victors pneumonia Aili got sick again, worse then usual. We tried to keep her home with daily visits to the clinic (difficult children dont do well in hospital), but she eventually got so bad we loaded the whole family to the car and went to the A&E, she seemed to get worse by the second!
We were sent to the fast track clinic from A&E where a nurse spotted Aili and promptly took us back to A&E, Aili was very very ill. She was admitted and tested positive for RSV. Her oxygen levels were so low had we kept her home longer she would have possibly suffered brain damage as a result of lack of oxygen. 3 days in to her stay her breathing was better but her heart rate was starting to go all over the place, she was on every monitor available at this point…. at one stage her heartrate dropped to 35 and noone knew what on earth was going on, We became heart patients instead of RSV patients. The RSV (which affects premature babies/children alot worse then full termers) had hit her hard and it had gone from her lungs to her heart muscle. Eventually we were sent home with follow up appointments with cardiologists as well as the usual doctors.

Her heart is fine now, we have received the all clear, but I am not sure I will ever fully recover from seeing my daughters heartrate go from normal to almost stopping.

A few months passed and Aili had stopped growing. She cried more then ever before, even in her sleep, she would not sit and play for even 2 minutes on the floor (not that she ever really did before either).

So we held her, we held her at night when she slept, we held her when she was awake, we held her when she played. Food was still a constant battle and she still did not each much. It seems we were in the doctors clinic atleast twice a week. I would phone up and before even asking for an appoinment the receptionist would ask if it was Aili’s mum calling.
We were told RSV can take children a long time to bounce back from, so we struggled on, not really looking for answers, we thought we had them!

A few more infections, more bouts of diarrhoea then back to constipation, I kept breast feeding because it was the only thing she seemed to want. Her stommach was always bloated and as she started talking more and more she would now tell us daily that her stommach hurt. I went to the doctor (again!) this time looking for answers, RSV still affecting her just didnt seem likely anymore.
We did stool samples, bloodtests, etc etc, everything came back ok. She got another bout of diarrhoea and also vomiting, she had aways vomited on and off, but together is never a good thing. We spent days in the clinic with an IV and nights at home.
After days of not getting better and no medicines seeming to help again we went to hospital and got admitted, she was dehydrated and her iron levels were found to be so low they wanted to give her a transfusion! STILL noone had answers for us….

4 days in hospital and off home we went, I made her a big bowl of pasta, and she vomited again…. I think we all knew at this point that this was not just some tummy bug, something must be very very wrong with our little girl…..

Our doctor called and told us some tests results had come back and we had to come in.  I knew which tests had been taken so I think I knew then that it was either dairy or gluten. I prayed for it to please be dairy, please please let it be dairy! It wasnt, it was gluten and our lives changed forever.

I say our lives changed, but they changed for the better. We took Aili off gluten and within days she was calmer, the crying eased off and she would sit and play with her brother for short periods. After a week or so she came to me, pointing at her stommach and said, “look mummy, owie all gone!” (That made me cry)
Her bad temper calmed down and she seemed a little bit to us like someone had given her a tranquilizer. For the first time ever I was able to stop and chat to other mums at school run, because Aili would wait patiently rather then scream her head off.  I was able to go for drives that took longer then 10 minutes, I was able to complete a supermarket shop rather then giving up half way through.
People I hardly knew were coming up to me saying our daughter seemed different! For the first time I realised just how bad things had been and how stressed I had been, slowly slowly we started to relax and be a family again. We still felt awful though that for all that time, our little girl had been in so much pain.

I am not going to go in to the long story of doctors visits or the rest of Ailis diagnosis, or even how I came to start Gluten Free – U.A.E, because this is Ailis story, not mine.

She is now a happy 2 year old, she is growing again, she no longer has stommach pains, and we are enjoying spending time with her.

Aili’s mum – Linda

EDIT 2014, Aili is now a happy 4 and a half year old, You can follow her journey on her mums (more personal) blog, Gluten Free & Me ( <– that is here!)

Aili