Category Archives: Allergy

A horrifying egg story (!!)

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Driving to school, normal, lovely sunny school run. We chat, as we always do. We talk about friends, about school, anything really. We are trying to figure out which of the girls doesn’t have a cat because A wants to go on her first ever sleepover. Its not fair she says that she’s almost 9 and never slept at someones house. I instruct her to ask all the girls about their pets and tell me. I feel sorry for whichever family doesn’t have a cat because that mum, she will be my friend! haha

Then a bit of silence…. and a tentative …. “mummy…….” I can hear already by her voice that this is something important. “Yes sweetie?” I say. She takes a deep breath, “mummy, Miss Z says we are painting hardboiled eggs in art for easter”. My heart almost stops. Like a giant claw just closes around it and Im unable to breathe. Eggs? I say, real eggs? “yes mummy, real eggs, hardboiled ones”. My mind is racing, my knuckles white on the steering wheel. Trying so desperately to stay calm. Did Miss Z forget? Has she not read her file? Did someone somewhere go totally bonkers? When do you have art again I ask. She doesn’t remember.  A, I say, listen to me now. If at any point you go in to a class room and there are eggs there, real eggs, I want you to walk straight out and go to reception and ask Miss T to call mummy. ok? “Yes mummy” she almost whispers. I ask her why she didnt speak up, she shrugs. I try to be calm still, I tell her I am proud of her for telling me, I tell her well done, and she did the right thing and next we will work on being vocal and speaking up. She understands, she nods. She knows.

We arrive at school. My legs are weak, I feel like I might pass out. I kiss them both goodbye, try to smile and seem normal, but my whole world is spinning.

I go in to reception, I try to be calm, I am everything but calm. Hi Miss T, I need to speak with Mr R, Mrs Y and Miss Z I say as politely and calmly as I possibly can. Yes of course she says, what is it regarding? “EGGS” I say and then I feel relieved somehow, I laugh, Im almost me again. Ive made it, Ive made it in there, Ive averted whatever disaster may have happened. I quickly explain the situation. “Yes, she says, of course, EGGS”, she pops off to the staffroom and manages to catch all the people I had asked for. She comes back. “Polystyrene egg” she says, “thats what they are painting. But I reminded them all about real eggs, and that if any real egg is brought in to any class room by anybody A should leave immediately. I am sending an email to all her teachers now as well, just so they all have a reminder”.

I am holding the reception desk, laughing now, I can breathe again. We make a joke about stupid chickens and stupid eggs and I am so relieved I almost want to hug her.

I am so relieved. Polystyrene eggs.

How a small conversation about egg can ruin ones morning. :/

Welcome to allergy mama world.

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My top 6 #Back2School items for an allergy kid!

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So, Im one of those mums remember? (Eye roll as you see fit). As one of those mums back to school is a little bit harder, and a little bit more stressful. Whether you are new to the allergy / celiac game or an old timer, my list of must haves may help make your life a teeny bit easier. Aili was diagnosed as a baby, not yet 2 years old, now she is over 7, and making sure I have these allergy must haves around is totally routine.

  1. Gluten Free labels! I stick these on all our lunch box containers, these serve as a great reminder for any teacher or other adult approaching my child and hopefully reminds them to not touch my carefully prepared allergy safe meal. These are from Ladybug Labels and they ship internationally. The labels are dishwasher safe and stay on for a long time. Through the years I tried many different brands and these win hands down. The quality is superb and they are easy to peel off and stick. (http://www.ladybuglabels.com)
  2. Name labels. The last thing I need is for my kids to lose anything (they do, anyway obviously, especially my son, lol), but even worse would be their stuff getting mixed up with someone elses. All their lunch gear including cutlery has a name label. Again I tried many different ones from different companies and these are now my go to every year. Delivery is fast and cheap even for international delivery. I always get the plain label, it sticks well, peels off easily and is dishwasher safe. I still have some labels from when my son was 4 that are stuck on! He’s almost 10 now, thats value for money right there! These are from Easy2name and come in lots of different colours. (https://www.easy2name.com)
  3. Good lunch boxes! My kids bring lunch to school every day and I need something that lasts, is good value for money, and works! It needs to be able to keep my kids food hot or cold, and I need to be able to clean it easily as it goes in to a contaminated environment on a daily basis. We now use only Pottery Barn lunch boxes. The kids get to pick a new one every second September, so we have a few, the first ones we ever got are still alive and kicking (!). We use lunch boxes for every day outings as well, so even though the Pottery barn boxes aren’t exactly cheap, the fact that they are practically indestructible makes them value for money. I pop them in the washing machine regularly to clean them and so far, no problems! Pottery Barn also delivers internationally! (http://www.potterybarnkids.com)
  4. Good Thermoses! My son goes through anti cold food phases, especially in winter. Ive tried so many thermoses its unreal, many of the kids ones are actually good, but to small for my growing boy! I also found many are hard to open once the hot food is in and I prefer my kids to be able to open their own containers. Surprisingly, the best food thermoses I have found are the IKEA ones (or maybe not so surprising, it is SWEDISH after all, haha). They are a great size, easy to open, no flimsy silly seals that come off after 5 uses, and best of all, I can wash them in the dishwasher (they do say not to, but I do and so far no problems). As far as affordability goes they are amazing. The food stays nice and hot too which is obviously great as so many thermoses don’t keep their heat well. (http://www.ikea.com)

     

  5. Baby Wipes and hand wipes. Seriously, you cant get enough of these babies! I keep them in every school bag, in every handbag and each kid has some in school. The baby wipes are sometimes on special and you can get a box with it, cover the box in funky stickers and make it non babyish for school. Alco gel is of no use as it does not kill gluten or other allergens, allergens need to be washed / wiped off! You can get wipes in pretty much any shop. Not all wipes are gluten safe! Johnsons contain no gluten.
  6. A good freezer block. Again, I tried so many. Having had my kids in school in Dubai I may have gotten overly paranoid about the whole cooling issue, but unless you are sending a hot lunch you really do need to worry. These allergy / celiac kids are often more sensitive then others, and the last thing we want is to give our kids food poisoning. I have every size and shape imaginable, these ones are firm favourites as they are slimmer then others, come in pretty colours and stay frozen until lunch time even though they are slimmer. I got these particular ones in Jula. (Yup, another Swedish shop!) (http://www.jula.com)

Anyone want to add anything? Is there something you cant live without for sending your allergic or celiac kid to school? Id love to know 🙂

If you like this list, join me on Facebook!

 

A big thank you to my school – a step in the right direction!

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A big step for mankind…. well, thats how it feels. So far in Poland I haven’t come across a school with a food policy (the number one question one of those parents ask when looking at schools). Last year I nagged, other parents nagged, many others also nagged, against. As they do you know.

But this September big things happened. There is a food policy. A food policy, an allergy action plan, staff that have all been trained in first aid and trained on allergies and contamination. Eating in class rooms will stop over time, and the school will be nut free. No more birthday cakes at school (YES!!!!!!) There are now standard procedures for kids with “issues” and I no longer have to make my own information leaflets or train staff.

This, this is good for schools. Its amazing. It can only help to make the school better. I am a firm believer in food policies. I am a gigantic supporter of food policies. I was, even before celiac kid was diagnosed. Why? Because I am a human, because I know that even if my kid doesn’t have a food issue, someone else’s kid might. An anaphylactic shock is not something I want any child to experience, or watch.

As one of those mums I might get some dirty looks over the food policy, but I will hold my head up high, and take some credit, not blame. Because a food policy is the right way to go. It teaches our kids about others who may be different, it makes them aware, a world that is aware and considerate. That is a world I want to live in.

Thank you school!

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Including the different child

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Time and time again here in Poland I see the food allergy kids being forgotten. They sit on the sideline watching their friends eat cake or whatever it is thats been brought to school / nursery. It makes me so incredibly sad.

In Sweden there are rules against this, schools (and nurseries) have to follow government guidelines, this means there are strict food policies and also inclusion policies. No child is to be treated different. Basically, it means, that if there is cake in class, suitable cake must be provided for ALL of the children. If this somehow fails there is a report system in place with a chain of command that you make your complaint to and there will be an investigation.

In Dubai we were lucky to have an amazingly supportive school and a food policy that suited us. There were no laws backing us up, but caring adults and a large dose of common sense, meaning a small child should be included in a school environment, not excluded. No matter what the child says, it is not ok to have a kid sit and watch friends eat. School – in my opinion – should be for learning, and once you start teaching kids that its ok to exclude another child based on their allergies, religious beliefs, autoimmune diseases, then you are going down a very very wrong path.

We teach our children to respect others, to not point at the morbidly obese, not to laugh at others misfortune, to be caring and nurturing individuals, but how then, does it make sense to have a child in a class room or lunch room going without? It goes against everything we are teaching them, and if you ask the young children themselves, it upsets them too. Most would rather have a toy or a treat that everyone can eat. It isn’t that hard really. And if it feels to difficult, then simply ban foods that exclude from a school environment. It is the right thing to do.

I haven’t had enough fight in me in the past few months to deal with this. But the fight needs to go on. The sad thing is…. it shouldn’t have to be a fight at all 😦

Please do share this post, not for me, but for all the children it affects.

-Linda

Playdough Contamination.

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I had a discussion with a lady who runs a big (gluten free) blog here in Poland about Playdough. She said its ok for her (celiac) kids to play with as long as they wash after, Ive always said no way Jose. Playdough residue sticks to your hands, under your nails and gets everywhere. Any classroom with gluten free kids should (in my opinion) be a gluten playdough free zone. If other kids play with it little bits will get everywhere, on the floor, on their shoes etc, the risk of contamination is just to large, and one that is easy enough to eliminate.

Our school uses playdough, but Celiac kids class all use gluten free playdough. I bought enough for the whole class and I have extra at home that can be brought in any time. You can also easily make it, but Im lazy 😉

We are on week 3 now after contamination. Something went wrong in art class and celiac kid got given a piece of playdough to stick something on to something with. She wiped her hands after, but with play dough, wiping is just not enough. There should be nail brushing and plenty of hot soapy water all supervised by an adult and even then its just not a great idea as residue may still remain on the hands or in the environment.

I picked her up that day and her tummy was huge. Imagine a 5 year old girl about 7 months pregnant. Thats how her tummy looked.  Of course at that point I didn’t know why, I just knew there had been contamination. I also knew it must have been little, because she was not in extreme pain.

Celiac kid was home then for a couple of days, I cant actually remember why, but for the following two weeks she had diarrhea and also a few occasions of vomiting. Horrendous stomach cramps, mainly in the evenings or after eating.  Of course all this has its own issues, fear of using the toilet, having small accidents in school and being embarrassed, ashamed and insecure. Fear of eating because after eating there is more stomach pain. Tearful, cranky, very very tired etc. I obviously don’t know all the symptoms, because many of them she would be to young to explain to me.

It took a week or so to get to the bottom of what contaminated her. I am not angry that it happened, its all a learning curve, for all of us. The art teacher had not received the same paper work as the other teachers and was not aware playdough had gluten in it. I blame myself for this, although some may argue its the schools job. I say its all our jobs. And now me, the teacher and support staff will be sure to remind / point out an extra time that playdough has gluten and where the gluten free one is kept. Celiac kid herself is also old enough to ask and has been told that asking is a good idea.

My point here is, that gluten playdough is not really safe. There is a risk involved. If you have Celiac kids, please do not allow them to use gluten playdough in school. Make gluten free one (I have a ton of pins on pinterest), or buy it. Below is a gluten free brand widely available in many countries.

So we continue on with week 3 after contamination, we continue being dairy free while she heals, and give extra cuddles and probiotics. For some playdough, all this, is definitely not worth it.

Remember also, that not everyone will have a clear reaction, damage on the inside still occurs! 

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-Linda

Does fun = Junk?

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obesity-snapshotSo, I have gotten rather heavily involved in the PTA this school year. Yesterday we all had a meeting to plan the events for the rest of the year. Not the first meeting, there have been a few, and in the events department the thing that keeps popping up is FOOD.

As one of those mums, any event involving food is just another opportunity for my child to feel singled out, lonely and different. As a mum, this ties my stomach in to knots. Big ones.

Food – in my opinion – has no place in school unless its eaten at lunch or snack time, and then it should be the child’s own food thats consumed, and no junk.

Having a Fun food Friday or a similar event is ok, but only if the food can be enjoyed by all and is healthy!  Try telling that to the PTA! haha. Apparently, food is only fun if its junk. Apparently, it has to be mc Donald’s or Pizza or there is no point. Now, Im sorry, Im not trying to be a party pooper here, but hasn’t society ‘got it’ yet? That obesity is an epidemic? That we are raising a generation of kids that eat as much sugar in a day that kids a century ago may not have eaten in a year or even in their lives? That heart disease in the young is on the rise, as is diagnosis’s such as ADD and ADHD and concentration issues etc are also sky high? That giving the kids a meal of Mc Donals’d is not FUN at all, but in fact teaching them that rewards = food, fun = junk and sending the wrong message entirely? Couldn’t Fun food friday be fun in the park friday, or fun fruit salad making day? Or just fun food friday involving something other then high starch high sugar high toxin foods that I as a parent don’t want to feed my kid like ever – gluten or not!?

My celiac kid, she know she is different. She knows she has to eat only her food. She knows junk is bad. We go to extreme lengths to make sure her food is highly nourishing, packed with vitamins, and mainly sugar free, organic etc. We think 11 pneumonias is enough and we do what we can to strengthen her system, her body. So what message does it send when school wants to serve junk and on top of that they choose to call it fun!

Don’t even get me started on birthday cake celebrations. WHY? I am sending my kids to a private school to be educated, I never asked for them to be served cake. Again, its just another time my child gets to feel different, not just my child, many children. I am paying for my children to be educated….. not to sit and be made to feel different. Hate what I say all you like, this was my opinion before our Celiac diagnosis also. We actually chose our last school (before diagnosis) partly because of their food policy! Their policy allowed no junk, fizzy drinks, cakes, donuts, chocolates etc in lunch boxes, no nuts, no food sharing, and no birthday cakes. No birthday parties during school hours (woohoo). For childrens birthdays, parents were allowed to bring in a small sealed bag with a treat or toy for each child, it was given at the end of the day and any food items were not allowed to be eaten in school. The school soon had half of Dubai’s allergy kids in it, because the policy is fantastic, and guess what, no one ever complained! Those were the rules and thats that!

We couldn’t choose a school here in Wroclaw based on food policy because the schools we visited did not have a policy. I asked about food policies and birthday (cake) policies and was met with shrugs and question marks.

Its 2014! Aren’t we, parents, teachers and educators more aware then this? Shouldn’t every school have a healthy eating policy? Should we not stop giving kids unhealthy foods as treats? From the PTA meetings it seems that I am in the wrong and Im just alienating myself talking about it….. even more reason to have a policy set by a school, because this way you are taking away my choice of what to feed my child. Because obviously if the other kids eat junk I will replicate that junk best as I can, and she will still feel different and it is just so not ok.

Just one last thing, my children are not deprived. They eat nice food, they eat good food, sometimes its even fun. But its not junk, so shoot me!

-Linda

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You win some you loose some….. (allergies!)

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So we are back from the hospital in the mountains. It was amazing, gorgeous, and calm and everything you could possibly ever ask for in a hospital, the scenery in Karpacz is amazing. Oh, and they could FEED her! First hospital stay where she ate the food!!

Results? Well, not all test results are in yet, but it looks like CF is more or less ruled out. Celiac kiddos lungs are healthy with no damage! If anything she has strong lungs that have been able to cope with so many pneumonias. The doctor almost got himself a big slobbery kiss when he told me this. Then I remembered Im married (although the news was so amazing Im sure hubby would have forgiven me, heck, even done the kissing himself!).

We left with a couple of handfuls of more allergies diagnosed, but egg was not giving a reaction this time!! We had an egg challenge which went well so we are now able to introduce limited egg to the diet!

So what remains now? The liver, kidneys, lungs, heart, spleen etc have all been looked at! So, now the immune system. Her blood is fine, but part of the immune system has something to do with the cells, so thats next on the list. We are also being reffered to the paediatric gastros here in Wroclaw to speak about her growth (which is not really happening) and follow up in regards to her Celiac.

Now fingers crossed the genetic test and last sweat test comes back clear, but the doctor wouldn’t even consider that it may not as her lungs are GOOD! Woop woop!

I leave you with some images from Karpacz, all iPhone pictures, so just imagine if I’d had my proper camera!

-Linda

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One of those mums…..

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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.

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Eggs and dogs and underwear.

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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

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

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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