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 🙂

If you like this list, join me on Facebook!

 

Me and Social media

So, people have been telling me for years to get instagram. And I have been telling them for years… no. Twitter, Facebook and blog is enough, remember I do my twitter and GF UAE twitter, my facebook and GF UAE facebook and both the blogs too!

Well. I was wrong, and Im admitting it. I got Instagram and I LOVE it! LOVE LOVE LOVE it! Its like twitter only its just images and nobody gets pissed off that you are posting to many images because, DOH, its Instagram!

So yeah I was wrong. (See hubby? I do admit it sometimes!)

So if you like food, puppies and other cute things, do come join me, see you there!

My Instagram!

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Having a healthy child….

When you are pregnant and people ask which sex you would like you happily answer that it doesn’t matter “as long as its healthy” you say. Because then and there, thats what you are supposed to say. It doesn’t matter if you wish for a girl or boy, the wish for health comes first.

Then fast forward a few years…… and the child, the child that was born with 5 fingers on each hand, 5 toes on each foot and an adorable heart shaped birth mark on her bum…. this absolutely perfect human being that you made. She is not healthy. Not even a little. And you know what…? It doesn’t matter even one tiny little bit. You don’t love her any less, you don’t secretly wish to return her for a refund and you wouldn’t change anything about her for the world.

You learn to live with the cards you have been dealt, you make the best of the situation you are in, learn everything you can about the diseases and issues you face, and life goes on. It goes on, and you live and you fight, and sometimes its hard, so very very hard, but its ok, because its your life, and everything you do is for your child, and it really doesn’t matter one little bit because to you she is perfect in every little way. 

Don’t feel sorry for us, don’t say oh poor you, don’t say it. Don’t say you are lucky that there is nothing wrong with your child. This health thing, its a tricky thing because it can come and go, instantly. Think instead, think for a moment, if you see me struggle, how can you maybe help…? There is so much you can do, really there is!

Spend time with us. Understand when we cancel for the 15th time. Forgive me for forgetting really simple things. Come for coffee. Ask if you can bring something – I will always say no, but its nice when you ask. Call or text, even when if I forgot to reply the last time. Send me a link to a funny or cute story, better yet, make me laugh.

Just be there, be our friend, be our equal, not someone who pities us. My child, my princess, she is perfect in every way, just like your child. Things sometimes aren’t as simple for us, just accept this. Accept us, this way, the way we are.

Things are a bit tricky for us lately. Don’t walk away, we need you now, more then ever.

(putting most our health updates on Facebook lately – go visit)

Welcome to the family celiac genes, we are not pleased to have you!!

I have been quiet lately. I have my reasons. Those of you following the Facebook page will know why….

I have been UBER busy coming to terms with the reality of celiac genetics. The reality is, that me and my son, both have the genes. Yes, genes! We both have BOTH the celiac genes. Congratulations to us.

Its funny how after 4 years of joking with my celiac buddies that I am probably a “closet celiac’, and 2 of my favourite doctors agreeing its safe to assume I am celiac too, now that I have this paper, I am in TOTAL denial. And I mean total. I haven’t eaten gluten for over 4 years, but now that I have this result, all I want to do is run out and eat gluten…!

After over 4 years of being pretty sure that I have the gene (and not doing the test because I wasn’t emotionally ready – read chicken) I am now in total shock and denial. I keep re checking the paper to see if its really true, if I really have the bloody gene, I read it and re read it, and I keep laughing (rather hysterically mind) because this is us, and of course I have the gene!

(Did you watch Friends? The episode where Chandler and Monica are in bed and they are talking about who the father of the baby they are about to adopt may be, and Chandler says, this is us, ofcourse its the ax murderer. Well thats a bit like me and my family, and a constant joke between me and hubby.)

I keep saying to myself that fine, its just a gene, and obviously I don’t have celiac. Obviously right??? Never mind the bone pain, the migraines, the fact that until I cut gluten I was the skinniest girl in the world and that Ive had stomach issues pretty much my entire life…… All of a sudden in my head all this… – not gluten related at all! (Im in denial, didn’t I tell you?)

Never mind the fact that we just spent 11 days in Greece and that I ate gluten free but not contamination free and a week after getting back my tummy is still in absolute bits and I can hardly move its hurting so bad. Stress you know…. (told you I was in denial).

For my son, we stuffed him with as much gluten as we possibly could during holiday and did another celiac profile. His profile that was done at the same time as the genetic test was negative…. Im not sure why… the previous was inconclusive. I know he has a rash that is gluten connected and he himself says he feels confused and forgetful at times (when eating gluten) – could it be he is describing brain fog?

Clever 8 year old that he is though we have talked to him about the options, and he wants a positive test before cutting gluten, just so he can know for sure and be careful. I hope the next profile is positive so we can just be done with it, if not I will speak to our celiac professor and see if they can do a biopsy on him. If he had no symptoms I would just keep doing the profiles I guess, but there are symptoms, mild, but still symptoms. Some may argue we should just cut it and be done with it, but without a diagnosis I fear he will not be strict and continue to eat gluten at parties and play dates. This is not an option if he has celiac, so I do feel in his case its important to pursue a complete diagnosis. He agrees, and not because I talked him in to it. we listed his options and he picked “knowing for sure” and having a biopsy if needed. I am so so proud of him. SUPER proud.

For those of you who have no idea what Im talking about, heres the deal. There are two genes connected to celiac, one of them is pretty common and the other rare. You can have one or both genes and never ever develop celiac disease. However, if you do have one (or both) of the genes, its important to remember celiac can develop at any time – statistically its more likely that it wont though.

Usually a genetic test is used to rule out celiac, it is not used to diagnose, as it only tells you if you have the genes necessary to develop celiac, not if you actually have the disease. A positive celiac blood test (which looks for antibodies to gluten) and a positive biopsy of the small intestine is still the go to method for a celiac diagnosis. 

In other cases, the genetic profile may be done to gather information when you cant do the celiac profile, like my case. I am not eating gluten, so the celiac blood test would show a negative. You need to be eating gluten for a celiac blood test to be accurate. 6-8 weeks of daily gluten, minimum! Going back on gluten is usually called a gluten challenge or a gluten force. 

In some countries they say to test first degree relatives for celiac every 1-2 years, others say if there are symptoms only. Of course, if you have a negative genetic result, further testing would be unnecessary. I wish more countries would make genetic testing easier to get. Here in Poland its relatively cheap and we just walk in to a private lab and request it. 

Ho hum, so thats us all up to date. This closet celiac is still in the closet and now also in denial. I cant do a gluten challenge as it would make me to ill.

I also dragged hubby to the lab and had him do the genetic profile, he already has his DH diagnosis and a positive blood result under his belt, but he too is in denial, for a long time now, haha, what can you do.

I guess the name for the blog, Gluten Free & ME, is just so much more fitting now.

-Linda

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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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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.

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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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