Tag Archives: coeliac

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!

 

Its May again

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May is important in my house as its Celiac awareness month. This is the first May that we know for sure all 4 of us have it. May is also Ehler Danlos awareness month, and Lupus awareness. How awesome is that? (Or actually not so awesome as it happens). As you know my daughter has EDS and is under investigation for Lupus. May is also when her birthday is!

I will do my proper Celiac awareness post later in the month, but for now, please, if you do follow my blog, pop to my facebook page and share some of the celiac awareness posts Im sharing in May. There will be a new one daily, all tagged #celiacawareness #nochoice #pleaseshare . Maybe we can reach another family like mine, a family that suffered greatly and had never even heard of celiac disease. Maybe we can help prevent some suffering somewhere. So head over, like or share or comment. And Thank You!

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Tesco Poland – Thank you!

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Remember some time back when I wrote about Tesco Poland and how absolutely awful it was in terms of free from? I sent that blog post to every Tesco head office address I could find, tweeted it repeatedly and emailed SO many people. Then… a few months back things started happening in Tesco. A free from shelf appeared, then two shelves, then three…. the bio section grew as well. I kept saying to hubby, I HOPE they bring their free from range over, its SUPERB… then I started seeing the Free From lactose free stuff (this from a shop that didn’t even have basic lactose free milk before). The Free from cottage cheese arrived a few weeks later, and I was like “YES!!! They are SERIOUS”. We now have a gluten free section that would put most other shops to shame, bigger then Auchan and carrefour for sure… and today…. oh wow… today, there was a free from sign on the freezer, and there was ICE CREAM! And there was jumping up and down a little and squeals of happiness and YESSS!!!!!!

Now all we need is the pies, the ready meals, the lasagnes, the cottage pies the everything!

And one of the leading sandwich meat factories went gluten free a couple of months back, and another looks like its following suit! POLAND, you are shaping up nicely for people like us! Im so happy. Really. Its only food… and yet its the normality of walking in to a shop and being able to buy something that others take for granted.

Tesco Polska, dziekuje bardzo!

Inne wiadomości na temat życie bez glutenu w Polsce, nie zapomnij śledzić nas na Facebooku.

5 years gluten free!

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We have been gluten free for 5 years this week. 5 whole years! I remember it like it was yesterday. We were called in to the clinic, it was a Saturday morning, they had some results they said. Aili had been in and out of hospital, I was drained, mentally and physically. My life revolved around my screaming baby and lots of vomit.

We went in, the clinic was busy, lots of screaming kids, everyone was rushed. All the staff knew me by then, by voice, by name, by daughters name. We were ushered in to see the dr between two others who had appointments, it was rushed, no examination, papers handed over. I had been hoping it was lactose, but it wasn’t, it was gluten and my whole world was spinning.

We walked out, papers in hand. Gluten cant be in to many things right..? My son was hungry, my baby girl was hungry, we were in a mall and the mall was spinning. I let out a small sob. My drained self couldn’t cope. That small sob was it. My husband rolled his eyes and told me not to cry again, our life was a mess.

I never cried about gluten again. I cried many times since obviously, but not about gluten in particular.

We went to mc Donald’s. Son had a burger, Aili had some fries. No gluten in fries right…? We went home. We went home and nothing was the same again…..

It was good different though, not bad different, because the vomiting….? It stopped that day. Our girls life was saved that day. It continued to be saved every day since.

I look back at that day now, and I feel sorry for the exhausted mum that I was, and I wish I could have given that mum a hug and told her it will all be ok, that its only hard at first, and that life will get better now. I wish I could hold that mum and tell her to cry it all out, get it over and done with – the crying. I wish I could go back and smile at that mum and encourage her, because back then, going gluten free seemed like such a huge huge task, keeping my baby girl safe seemed so impossible.

I was so tired from months of illness and hospital and clinic visits that any task – no matter how small- would have seemed impossible that day.

We did it, of course. I did back then what I still to this day do with all the new stuff. I learned everything I needed to learn, I got on with it, I looked forwards and upwards and onwards and I remained as positive as I possibly could, and I have, almost every day since. Even in my darkest deepest moments of despair, I am still a very glass half full kind of girl.

Gluten now, 5 years later seems like such a minor thing compared to all the things we are facing today. Sure, its hard still, but its second nature, I have done it for so long it no longer bothers me. 

If you are that mum that I was that day, today, tomorrow, yesterday… please know this. It gets easier. Really. It really really does.

Happy 5 years to us!

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Dont forget to join me and my family on Facebook! 🙂

 

Holland & Barrett

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Oh my gosh! WHY Did I not know about this before? A few days ago I stumbled upon Holland & Barrett while searching for gluten free, eggfree cornfree flours. Randomly clicked around and a few minutes later realised they do International delivery! And guess what, it works out cheaper (delivery wise) then amazon to Poland!

Shopping Corn free, gluten free , wheat free and egg free means there is very very little available to us, but after clicking our allergens on the left and reading ingredients I found flour (!!), bread mixes (!!) biscuits and mayo. Anyone else who is corn free on top of gluten free will know my joy. Soups, so mummy can make lunch occasionally without cooking! Gravy, because making it from scratch every time gets so old, sweets, because kinder egg chocolate – however nice it is – gets boring after a while, ice lollies, because, ICE LOLLIES! Fancy teas for mum, because hey, Im worth it!

Then the joy when half the order came just 3 days later!

My joy though is nothing compared to the joy of little madam who got to eat mayo!

And in 2 days there will be more joy when the rest arrives!!

(This is like the kind of jumping up and down screaming joy that only teenage girls feel. Its A W E S O M E!)

Thank you Holland & Barrett, you made my day!

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http://www.hollandandbarrett.com

Sometimes I just want to scream- an update on our diseases.

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I am trying to process all this new information, come to terms with it, understand it…. but its hard to come to terms with things that are maybes, things that aren’t for sure.

With the Celiac process I also felt sorrow, and guilt (because mummy didn’t know) and then I read and read and read and learned whatever I could, made a support group because there wasn’t one, met others and I processed. I not only processed but I excelled in my knowledge, helped others (and still do) and it was all ok. Celiac was ok, our disease was not a lonely thing. We were “severe” symptom wise and issues wise, not those happy go merry celiacs that go out and function somewhat normally. We had issues, many of them. Now ofcourse I know most of those issues were probably not celiac at all but all the other crap that we now know about.

Trying to process a disease that I have to google every time I need to write it because I cant learn to spell it (hypereosinophilic syndrome) , trying to process a disease that she probably has but they dont want to say for sure yet because there is no damage, (lupus and rheumatoid arthritis), trying to process and understand a disease that is super rare and the only specialist that deals with it in the country we live has closed down his email and no doctors know how to get us the help we need (Ehler Danlos Syndrome). What else…? Haha, I mean, we for real have to think twice to make sure we include everything when we are told to give a medical history. The allergies and the celiac take a backseat will you, you are so minor I mostly forget! I even find that offensive myself as a celiac advocate, but it is how it is right now.

Then there is her immune system, a system that we know its faulty, but they cant figure out what part. She gets sick and her system doesn’t respond, she doesn’t fight. Her levels are ok on paper, but in reality…. not so much. They are testing and re testing, the road has already been so long, and yet there is an awfully long way to go before we actually get to someone saying a. yes, this is whats wrong with her immune system, or b. There is nothing wrong with her immune system and whats happening is a symptom of her other disease(s) that are not yet fully diagnosed. 

Meanwhile we are at home a lot. We rest. We eat. We try to live a normal life. What is normal anyway? This is normal to us, pretty much has been for years, naming the crap really doesn’t make much difference in how we live, although I must say I do feel better.

When baby girl says she has a bad day now and she’s tired, I let her stay in bed all day. A year ago I would have felt guilt, guilt that she isn’t playing outside, guilt that we never DO anything, guilt that she didn’t get enough fresh air etc etc etc. All that guilt by the way, it wasn’t my guilt, it was the guilt that society puts on you when you have a child that doesn’t look sick. If they don’t look sick they cant be, and so they must conform to a life where you do stuff every day, go out every day, dont use a puschair when you are 6 etc etc etc. Now the only guilt I have is that I pushed her when obviously on those bad days she needed to rest.

Oh, and I have guilt about her hair! Gosh, this hair that we grew and grew, and she would cry when we brushed and I thought she was just being a kid. She asked to cut it, and I didn’t say no, but I talked her in to keeping on with growing it long, every time. Now after reading and reading I realise that most EDS patients have “hair pain”, many cant stand to have their hair brushed as there is so much pain involved. Who the hell am I to try to talk her in to having it long?? I listen now. I have learned to listen with ears that aren’t tainted by our societies pre set expectations of what life should be like. I listen like a true listening expert and whats more, I hear her.

I will keep processing, I will keep on hanging in there. Check in on us on facebook (which is far easier to update then here).

Love and spoons

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My child has an invisible illness…..

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Its hard to explain to people. The questions, “why is she not in school”, well, she is sick a lot, “oh, so were mine at that age”…. yes, but not like this, she is different. I don’t want to explain, just leave us alone. We didn’t take her out of school for fun or for attention.

We cant come to your house, I don’t feel safe there, I don’t know how clean it is, or what allergens are lurking. We are not allowed to go to busy places…. I don’t want to explain.

Im sorry we cancelled on you again, we are not lazy, we do want to take part but its really hard for me, for us to stick to things we planned. We need to take each day as it comes.

Im sorry I park in the spot reserved for mother and baby or pregnant ladies with my 6 year old. There are days when she cant walk very far without getting out of breath, she is too big for her push chair and I don’t have the strength to carry her so far.

Im sorry I am sometimes unreliable or wont set things in stone, Im sorry Im sometimes so tired I can hardly spell my own name or listen to you when you talk to me.

I sit and watch over my child at night, measure oxygen levels and temperatures and give medications.

Im sorry she doesn’t look sick. Im sure if she did it would be easier for you to understand. Some of the sickest people you will ever meet don’t look sick in the slightest.

So the next time you ask and I try to explain, please don’t say “oh but she looks so well!” or “oh, she looks fine to me!”. You are not her doctor, you haven’t seen her paper work. You don’t know about the bone pain that sometimes makes her cry walking down the stairs or the nausea that sometimes hits her and is so overwhelming she has to lie down straight away. Or the breathing issues or the tiredness that comes from fighting. I know. I know. She has an invisible illness.

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Gluten Free in Poland

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Im on so many gluten free forums and Im constantly replying to the same questions about gluten free in Poland, so time to make a post me thinks!

Being gluten free in Poland is getting easier and easier. While some smaller towns mainly sell gluten free in specialist “health food” stores, larger chains usually have some items available. Some shops will have just a few items, scattered around the shop, others will have huge sections or even entire aisles dedicated to gluten free.

The main Polish brands are all clearly labelled with images for egg free, gluten free, wheat free, lactose free and so on. Its really very easy, even if you don’t speak Polish to find what you need.

The main chains that stock gluten free are:

  • Auchan, most stores have a large gluten free section.
  • REAL
  • Carefour, some of the larger stores have an entire aisle dedicated to gluten free.
  • Piotr i Pawel
  • Alma
  • Intermarché
  • I will mention Tesco here, because they recently introduced gf bread to their stores, this is all they will have though, so if you want other things and have other supermarkets available, give it a miss. Edit April 2016. Tesco has recently done a magic turnaround and is now one of the best for GF near me. Go Tesco!

For eating out, the words bezgluten and bezglutenowy will be your best friend. Both mean glutenfree. Pronounced how they are read. A visit to celiakia.pl (Polands celiac society) is well worth your while. The english section is tiny, but if you stay on the Polish section you will find lists of restaurants checked and approved by the celiac society. Menubezglutenu is another site which lists places with a glutenfre menu, you can search using a map, in polish and english.  Many upmarket restaurants have their own gluten free menus. Steer clear of basic road side establishments, as they mainly serve gluten loaded traditional Polish cuisine and will probably not even know what gluten is.

Poland also has some 100% gluten free establishments.

  • Dom Pod Ptasznica – a gluten free guest house in the mountains. The owners are both celiac and all the food they make is gluten free and wheat free.
  • Friendly Food Poznan – A totally glutenfree cafe / restaurant with amazing food. Review here.

Some of the common (gluten free) Polish brands are:

  • Balviten
  • Natura (meats)
  • Bezgluten

Some other things to look out for:

  • Grycan ice cream, all but 2-3 flavours are gluten free and labelled accordingly
  • Goplana chocolate, Poland’s oldest chocolate brand, all labelled bezglutenowy on the back and super yummy (I have yet to find a flavour with gluten)
  • Costa coffee (also sometimes called coffee heaven) have individually packed cakes that are gluten free
  • Trendy Vegan / vegetarian cafes seem to be all over Poland, they will usually also have a ton of gluten free stuff on their menu. Check them out!
  • Rossman – while a sort of chemist, often stock gluten free items.

If you are an expat, several pre schools now offer bezgluten food and have been trained and approved by the celiac association. YAY! 🙂

Be careful with:

  • Polish hams, sausages and bacon – almost all contain gluten
  • The famous polish kielbasa! ONLY buy the ones labelled gluten free.
  • Cross contamination, while many places may be able to give you something gluten free, the knowledge regarding cross contamination can be a bit hit and miss
  • Bakeries offering gluten free, these items may very well be baked on site which would make them low gluten, not gluten free, always ask and dont buy anything that isn’t individually wrapped if you are shopping in a bakery that also handles gluten items.
  • Airports! If you are going to be stuck in one for a while, bring food. Not even Warsaw airport has anything on offer.
  • Hospitals. No, really. Polish hospitals are terrible at feeding celiacs. If you end up in one (God forbid) you need to bring your own food. There are some exceptions to this, the lung clinics in the mountains see CF patients from all over the world and they are usually ok to feed those with allergies and celiac also.

Enjoy Poland and have fun 🙂

For more tips on Poland and gluten free life in general, join me on facebook! 

Those darn celiac genes….

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Yeah, I need to go on about those darn genes again. Im over it, I dont care, but maybe you guys do and you deserve to know.

Hubby has the gene too. Although it was expected, it just seemed far fetched….. well. He has it, which I guess now makes his DH diagnosis 100%. He has one of the genes only, but if I understand the result correctly he has both sides of it so would have gotten it from both his mum and his dad. Our poor kids really didn’t stand a chance eh?

Well, Ive said it before and I will say it again. Everything happens for a reason, this was obviously meant to be.

Now we are a family of 4 that are gluten free, no longer because we chose it, but because we have to be. All of us. Sons last profile was negative, but he only did 11 days of gluten. Those 11 days his rash came back and his tummy was bad and he didnt want to eat any more of it…. not putting him through 6 weeks of it, partly because its cruel, and partly because we cant as it will expose his very sensitive sister. So thats it, he will now be 100% gf out of the house also.

Shall I rename the blog now? GF & US? 😛

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

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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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