My top 6 #Back2School items for an allergy kid!

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 🙂

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Myths and facts and insensitive bas***ds (FAQ about Celiac)

Why is your house gluten free? I mean common, its just gluten right? 

Because Celiac disease kills. Yup, it kills. Only it does it slowly without huge obvious signs. Would you keep nut dust around in a nut allergy home?

Oh common, just one bite wont hurt? 

Hell yes it will. It will hurt, ALOT. In some you cant see it, in some the effects are felt and heard, for a long time. The last contamination we had the effects lasted almost 3 months (and that wasn’t a bite, it was contamination!)

Oh yeah, Im allergic to gluten too.

No you are not. You either have Celiac disease, gluten sensitivity (NCGS) or Celiac disease. Celiac disease is not an allergy, its an autoimmune disease.

You are just being difficult / embarrassing. 

HELL YES, Im trying to save my kids life here. Did you know Celiacs who are not gluten free or are repeatedly exposed to gluten have a much larger chance of premature death then the general population? There is also a higher chance of developing another autoimmune disease, as well as the risk of malnourishment and everything that comes with it, to name just a few of reasons I am being difficult / embarrassing.

Do you really have to wipe the darn table when we go out for coffee (insert eye-roll)

Yup, I do, if you cant deal with it you cant be my friend. An 8th of a breadcrumb can be enough for a reaction, thats my kid touching the table all over and then forgetting about it and popping a finger in her mouth or touching her lip then accidentally licking it. If you are my friend, you will help me wipe and give evil looks to anyone that stares!

Its Christmas, let her have one, it wont hurt her

Sorry, Celiac disease doesn’t take holidays.

Gluten is killed off / burnt off in high temperatures

If this logic was correct we would be able to eat a loaf of bread, its baked in the oven…. or an onion ring thats deep fried…? No… not so much? Didn’t think so.

So if you can write a list of what she can and can’t eat….

Yes, because that would be so easy, why didn’t I think of that earlier! THANK YOU!

If you leave bread out overnight the gluten will evaporate.

You really must have had a really special kind of education….. like …. say what?

Don’t worry, she will grow out of it.

What part of THIS. IS. NOT. AN. ALLERGY. Did you not understand? Autoimmune diseases are like very special gifts, they are for life.

Cant you just scrape the filling out of the bread and eat that? / PEEL the KFC chicken? /Pick the croutons out / Scrape the breading off?

Yeah, sure, lets sprinkle nuts all over this donut and then scrape it off a bit with a spoon and feed it to your nut allergy anaphylactic kid! No? Didn’t think so.

Oh gluten? Thats only in pasta and bread, not that hard.

hahahahahahaha. Thats is all. Really, hahahahaha.

Its SOUP, there is no gluten in SOUP!!

SO glad you told me, so AWESOME to have met an expert on this. THANKS! Assume you checked the thickener and the stock cubes? Oh yes, those can have gluten too. Never mind the small bits of pasta / croutons / barley / whatever floating in it…..

If I threw a crumb in her mouth what would happen?

You may very well end up dead thats what would happen

I got this for me and the kids – I couldn’t find anything you/she/he could eat

Yes, because picking up some sliced melon, bananas, fruit, plain yogurt, berries, cheese slices or anything cleverly labelled (!!) gluten free would have been too difficult. I understand.

You really are fussy aren’t you.

Yes, extra specially fussy in a very special kind of way 🙂

But, she’s not going to EAT glue / playdough / waterpaint 

No, but she’s 5. How many 5 year olds do you know who are impeccably clean after playing with stuff like that? Actually, scrap that. YES, she might eat it.


Might have to edit this one and add more later. Thanks to the awesome gluten free people in the Facebook group called Gluten Free and Me (not mine) for helping some with some of theirs. The lady who was told she was only Celiac because of her pregnancy must have been the best one. Or the gluten evaporates one. Heck, some of the stuff some of these people have been told, often by close friends and relatives ASTOUND me. Surely people who know someone with Celiac would take their time to do a quick google on actual facts?

I actually meant to put proper answers explaining very carefully, until I realised just how much bottled up gluten rage I held inside! Go ahead, add yours in the comments below or on my facebook page!

For those of you with a sense of humour failure, this kind of stuff is the stuff families like ours hears on an almost daily basis, while we smile sweetly and answer politely for the 5th time at the same dinner party, these are the answers in our heads. Or at least mine.

-Linda

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Playdough Contamination.

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

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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Did you lose friends over Celiac?

I think if you didn’t, you might be one of the lucky ones. Don’t we all have them… the people who don’t take Celiac seriously, who get slightly embarrassed when we start questioning a waiter or a manager, the not so discreet eye rolling when we start wiping crumbs from a table in Starbucks or tell our Celiac kid not to touch anything. Then they blame us, because WE changed. Well of course we bloody changed! We had to! And Celiac is hard enough without us needing people in our lives making it harder! It doesnt bother me to wipe tables in cafes, so why should it bother anyone else?

Haven’t we all heard it all?

‘A little bit of Gluten wont hurt’

‘You need to expose her so she can get used to it and grow stronger’

‘I know a family where a kid was allergic to bla bla bla and they started….’ (SHUT UUUUUUUP!!!!)

‘Oh comon, of course there wont be gluten in -insert ice-cream, dried fruits, chewing gum, crisps etc here – ‘

Why is it that people who hardly know what gluten is all of a sudden consider themselves total experts?

But then there is the good side, the best bit about Celiac! The instant friendships with other families like yours, the Celiac buddies. The ones you can call from the supermarket aisle and they do as much researching as you and can tell you in 2 seconds which salad dressings are safe. The people you can 100% relax with. Wipe tables, hands, ask the strangest questions around, and then offer them your baby wipes so they can do the same.

The truth is, for us, we gained far more friends then we lost. Sure, we lost some, but again, we don’t need people in our lives who try to ridicule or belittle our situation. So if you lost friends over Celiac, then get out there, go to your local Celiac meet up and meet others like you. For me, this is the very reason I started Gluten Free UAE, I wanted my child to not feel so different. And by having a huge network of Celiacs around us, being gluten free is as normal to my kids as it is to wear glasses. Some people eat gluten, some don’t. But I will NOT have people in our lives eye rolling near my daughter when we are doing things we have to do to keep her safe. I don’t make a big deal about Celiac, neither should they.

-Linda

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