Monthly Archives: December 2013

Another one of those trips….

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Im not entirely sure of the point of this post, and usually my posts have a clear point, but I had to write it, because I need to somehow process this, process that this is our life, and this is how we live. Its not a nice post, it wont leave you feeling gooey or good inside, or even enlightened, it wont make you laugh. Im sorry. Feel free to not read it. 

In the last few days Ive been through what no parent should ever have to go through… ever. Whats worse is that it wasnt even the first time, or even the second, or third… the truth is, I have lost count of the number of times that I have held my limp daughters body in my arms, the amount of times Ive driven like a lunatic actually hoping the police would stop me so they can help me get to the hospital faster, the amount of times Ive entered some kind of auto pilot where I just function and do all the things I need to do but I dont feel or react to anything, because if I felt or reacted, I would have had a nervous breakdown, meltdown or a whateveryouwannacall it ages ago.

So, my daughter is Celiac. Big deal huh? Many Celiacs live somewhat easy lives (and I dont say that lightly, I know all to well what the life of a celiac involves), other celiacs, like mine has a number of health issues. Are they related to her Celiac or other factors? Nobody really knows, but what we DO know is that her immune system sucks, her lungs have damage from her many many cases of pneumonia and upper respiratory infections, and Celiacs are more prone to pneumonia, on top of that she was born 6 weeks early and her lungs were probably not as great as they should be. I still fully believe that had my daughters celiac diagnosis come sooner, we would not be facing all these issues that we are facing today, some maybe yes, but not all.

So Monday I had a call from school, she was coughing alot, so I went in, gave her some meds, she seemed fine, no temp, no big wheeze, just the cough. I asked if she wanted to stay, and she did. A few hours later, another call, she’s coughing even more. I go in, and sure, she’s coughing, but not to bad, but I take her out of class. We hang out outside, play for a bit, she runs, plays hide and seek in the bushes, ‘mummy, can you seeee meeee?’, no big deal. We wait for her brother, he finishes and we go home. On the way home I see her looking a bit more pale. The tiny worry thats been inside me that I kept brushing away as me over reacting (because Ive been here before and Im maybe just hoping Im a bit hysterical and wrong rather then right!) is now growing. We get home, she’s coughing, I give ventolin, it helps… for about 10 minutes. I call my husband to call the clinic. They have an appointment only the day after. I give the kids soup, I pace, I ask the husband to find me addresses of hospitals, just incase you know, because Id rather know where to go, just incase…… I pack a bag, why? Im not sure, I had to do something, I guess I already knew, but wanted to believe that I was being a hysterical mum. She’s getting worse, I can see her chest rising and sinking, and its going to fast, to deep, and she’s not well, I know she’s not right, but its not THAT bad…. I put her in my bed, I lie with her, hoping she just needs to rest. Im lying with her, watching her chest rise and fall, thinking in my head, we need to go, we need to go, we need to go, at the same time as Im thinking, its ok, she will be better soon, its ok. Then I hear a cough and a splutter, and shes covered in vomit and so am I and so is the bed, and thats when my autopilot kicks in, the decision has been made in my head, we need to go, and then the ‘doer’ comes out and sorts everything. Son brings towels to cover the puke on the floor (yes I obviously pulled her off the bed as soon as I could), I pull sheets off the bed and pillow cases of pillows, I sit daughter in bathtub, I call husband to tell him we are going, I take the bag and add even more gluten free food and iPads, I take phone chargers, then I somehow manage to get us all dressed and ready and the pukey sheets thrown on to the floor of the laundry room. Dogs get locked in our biggest bathroom with food and water. Im doing it all so fast, but it feels like slow motion.

By the time we are in the car and driving (probably less then 10 minutes after the vomiting) she is drifting away, not unconscious really, but not responsive either. Like so many times before its all happened so fast. The GPS sends me the wrong way, or maybe I took a wrong turn, I drive like a crazy woman, but yet Im calm, extremely calm, like ice. We finally find the hospital, but the area is a mess and no parking that I can find, its dark, all the signs are in Polish and I just want to get in. So we park in a car park, not close enough, and my big brave 7 year old who must be absolutely terrified, helps me with all the bags, and I carry my daughter and we run. We run, and we get there, and I get to the front desk, and I ask the lady those familiar words, ‘do you speak English’ and thank heavens she says yes and I sit, and I open my girls coat and I point, and I say, ‘her breathing, please, she cant breathe, she has a history of low oxygen levels’.

This is a kids hospital A&E just after normal clinic hours, they are super busy, but we are whisked in to a room within seconds of our arrival and 2 Dr’s see to us almost immediately, a nurse helps translate and then husband on phone also. None of this matters, we are there, we are safe.

I don’t need to continue the story, this was 5 days ago. We were admitted of course. Daughters oxygen levels were around 87 when we arrived. We have been in an ambulance with levels higher then that. I know for a fact they were not that low when we got in the car, once things get bad they get bad fast. We have been let out now, not because she is well enough to be out, but because there is no place worse for someone with a crappy immune system then a hospital, the hospital is also not really able to provide 100% gluten contamination free food, so home is better. We had to beg and plead, but yes, she is home, with twice daily visits for IV meds. She is still very sick. Pneumonia. Her blood tests were repeated many times already, and it seems the day we came in is pretty much when the infection started, because the level of infection was low, so we caught it fast, caught it early they say. But how is that possible when she went from playing hide and seek in the bushes to being pretty much out of it in about 3-4 hours?

Celiac disease absolutely sucks. Pneumonia also absolutely sucks.

-Linda

Quinoa cooking for beginners.

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Quinoa

I love quinoa, I use it alot in my kitchen, I add it to rice, I use it instead of rice, I eat it in salads and I fry it and add cheese to it…. Think of any usual kitchen task, and I do it, with quinoa. My kids arent as enthralled with quinoa as I am, but thats fine, more for me! I cook up a batch and keep it in the fridge, it keeps amazingly well. So, whenever I rant about quinoa I get the following, all the time; ‘I tried it and I didn’t like it, it was bitter’ , ‘I cant figure out how to cook it’ , ‘it doesn’t taste of anything’.
I should be able to fix most of those in the rest if this post.

1. Quinoa needs to be rinsed. Even if it says it doesnt, still rinse it. Quinoa that hasn’t been rinsed can taste bitter and strange. Always rinse. No need for a funky culinder/siv with extra small holes, just pop it in a bowl and add water and swish with your fingers, quinoa sinks so its easy to pour the water out once you are done.

2. Double the water. 1 cup quinoa, 2 cups water, etc. Add your rinsed quinoa to boiling water and stir once.

3. Add Flavour! Quinoa doesn’t taste of much, thats the beauty of it. I boil mine in a stock cube, but you can try different things, a spoon of tomato puree for colour, some juice, herbs or your favourite spices.

4. Once the quinoa is back to a boil, lower the heat, then let it do its thing. It can take anything from 10-20 minutes to cook it depending on brand. You can stir once or twice if you need to. Once it ‘looks right’ and tastes right, take it off the heat, cover with a lid and let it rest for a while (a few minutes is enough, but longer is better – in my opinion).

5. Fluff with a fork (this actually just means stirring) and serve.

For quinoa beginners, try stuffing some quinoa in a roast paprika or just adding a couple of spoon fulls to a salad. If you like, eat it on its own with baby spinach sautéed in butter and garlic (see image). YUM.

-Linda

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Mixing with the gluten kids – No problem!

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We have been gluten free for over 2 and a half years now, the house, pretty much as long. We have ALOT of play dates and people over at our house, why? Because its easier. Here Celiac kid can play without supervision (gluten supervision), here, she can put toys in her mouth and touch whatever she wants, and there will be no issue what so ever (as long as people wash their hands as they arrive). I find that mostly, kids are extremely accepting of gluten free. I never tell anyone that the food they are about to eat is gluten free, why would I? You wouldn’t hear the host of a dinner part serving up pasta and saying ‘THIS is pasta made with GLUTEN’ (unless they had intolerant people there). Kids who visit my house generally eat what I serve, often ask for more and never even realise they are eating gluten free. Adults at times will be more hesitant, they take a bite of something and analyse it, like its a wine tasting! Then they look up and utter with surprise ‘its good!’. Like what, they expected us to eat disgusting food? It should be said here that I buy very few ready made gluten free things, I make all food from scratch and we eat a generally healthy diet with only a few processed things thrown in. But still, Im surprised that so many adults seem to think we live on some kind of starvation diet. If I had a dirham or zloty for each time someone asked me ‘but what do you eat??’ Id be very very rich by now. Its simple really. We eat exactly the same as anyone else, only our food is generally healthier (because I read every label and scrutinise it like a scientist), mostly organic, and always gluten free. We eat pasta, pizza, bread, hot dogs, you name it, we eat it. Except maybe liver. We aren’t to keen on liver. Like I said, kids don’t seem to care, they eat and move on.

We had one mum in our school who point blank refused to let her kids eat gluten free. My sons lovely teacher had asked me to bake for the class for their Christmas party so that his sibling would be able to take part in the open day same as the other siblings and mums and dads – the previous party I had ended up holding her standing by the door as there was a gazillion kids running around with cupcakes (poison) in their hands. I was so touched to be asked, what a kind gesture. So of course I went all out. My friend Katinka helped me bake brownies and cupcakes and biscuits and soft cake. The only mum who knew I was baking gluten free was the class rep at the time. She was obviously not happy as she was the one who usually baked. She sent gluten cupcakes for her kids, I overheard her saying at drop off ‘my kids wont be eating any of that stuff’ (meaning gluten free stuff). Talk about judgemental! At the actual party everyone ate, parents, teachers, siblings, kids, not a single person noticed they were eating gluten free! One mum said the brownies were the best she’d ever had!

Im guessing if we had made some kind of announcement about everything being gluten free the reaction would have been different. Kids however, are so awesome. To them, cake is cake, no matter which flour you use! If they ever ask, I explain, and all the kids that come to our house know I make awesome pizza and snacks. I only wish adults were as open minded!

-Linda

brownies clip art

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Ice Ice Baby! (had to be said!)

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The frost has arrived in Poland.

Every morning we go out and scrape the car, I bought 3 scrapers. Every morning the kids go ‘ICE! MUMMA ICE! Look, its snow’. Every morning I have to tell them its not snow, only frost. They nod and say, ‘almost like snow mumma’. Im not sure who is more exited at this point, me or them! They are exited for the snow, I am exited to see their faces when it comes.

V was very offended the other day when I told his teacher he has never seen snow. ‘YES I HAVE! I saw it in Mall of Emirates! Ski Dubai!’, What he failed to mention is that ski Dubai is an indoor ski slope, in a mall, and that we were watching from the outside, through a thick window, while dressed in summer clothes.

My kids are in for a big surprise! So exiting!!

-Linda

Celiac runs in families…..

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I need to talk about Celiac disease today. Maybe its the lack of glutenfree UAE meetings or the lack of interviews this last month, but I really need to tell people about this.

Why? Because I DIDNT KNOW. And IF I had known, our life today, could have been so very very different.

Celiac disease is genetic. You either have the gene or you don’t. Now, here is the tricky part, you can have the gene, and never ever develop celiac, because when you are born, the gene is not active, its just THERE. Then, at some point in your life, it may (or may not) ‘trigger’ (become active). For some people this happens after a major illness, surgery, a period of immense stress, for many women it can be triggered in pregnancy or childbirth. Some remember getting ill after losing a significant other. It really can be anything. Celiac has so many variations, one glove never fits all.

So, once Celiac is triggered and the person gets ill and hopefully diagnosed, then what? Then you need to test all the relatives, in some countries all first degree relatives are tested as routine, in others they only test those who may have symptoms. I personally think you should just test everyone, because while one celiac may have 20 symptoms, another may only have 1.

If a relative tests positive, then obviously that person will need to go on to have the biopsy and have Celiac confirmed. But if you test negative…. that is NOT the end. Please remember, the gene can trigger at any time. So regular screening is necessary. Some like to test yearly, others test if they feel unwell, others do a genetic test to see if they carry the gene (if you don’t have the gene, then no further screening would be needed), others still just go on a gluten free diet to prevent getting to sick in the event that the gene triggers.

Very often when someone gets diagnosed, testing on family members starts and it turns out Celiac has been in the family for forever with grandparents, aunties and cousins also being diagnosed. Some relatives may point blank refuse to be tested. ‘Ive been fine all these years….’.

Ask your Dr for a leaflet or a family appointment so that everyone can hear it from the medical professionals themselves.

If you are an undiagnosed relative of someone with Celiac, its important to mention this if you are ever under medical care. You may be in hospital with pneumonia and think that its not important because you were tested 6 months ago. but it IS important, always tell the Dr.

Celiac disease doesn’t have to be a big deal, the earlier its caught, the sooner you start the diet, the better. The longer it goes un noticed, the more damage it will have time to make. Some reversible, some not.

Are you Celiac? Share this information with your relatives. Often.

And remember, a blood test for Celiac will be negative for anyone already on a gluten free diet or anyone with an igA deficiency. Not all doctors know this! Find one that does.

-Linda

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