Then September came…..

September. The month when school starts, the mad rush to get clothes ready books labelled, running around, signing up for activities and….. for us….. pneumonia.

You know that Facebook looking back in time thingy..? In September mine has been filled with memories of Septembers gone, pneumonias. Lots of them with accompanying hospital stays. Hospital stays in Dubai and here in Poland.

So school started, big brother started school. Big brother got a cold. Little sister got a cold, and before we knew it, the pneumonia was a fact. Low oxygen levels, not super low, but low enough….. We did it at home with a supportive dr. and a mummy who knows her stuff. God Im tired.

Hubby is here. We have requested oxygen at home. Its September, a pneumonia already…. we are in for a long winter. Like every winter. Enough is enough. Let us treat her at home.

A year or so ago a dr. mentioned briefly to me that we may be prime candidates for oxygen at home, my thoughts then, NO, WE ARE NOT THAT FAMILY. My thoughts now….? WE ARE THAT FAMILY, GIVE US THE FUCKING OXYGEN!!

I kept her at home this time, through oxygen levels that should have been treated. But how can we put her in hospital every bloody time when they cant keep her safe there? When she cant eat there and when she is exposed to a gazillion germs? When she is so so frightened and agitated. When it puts all our lives on hold and makes everything so so much worse.

Its ok, we will be that family that has oxygen in the home, I really don’t care or mind, we are that family. Just give us the oxygen, please!

This is when I start telling you all how tired I am, but thats like a theme that runs through the entire blog, so let me leave it out this time.

I will say though – before anyone jumps on me – that kiddo was safe. Should be treated yes, but safe. I was in touch with a dr. the entire time and I have monitors at home. Just need the actual oxygen. No jumping please.

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Oh sheesh, just read through and I mentioned tired, twice. See how tired I am? lol 😛

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

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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Back to school and corn can do one…..

So upset today. Really really moody and horrid.

Back to school is getting me down, big time. Why? Because only one is going back, and he has to be proper gf for the first time ever, and I need to bake again, and baking corn (and egg free and gluten free) free is a bloomin nightmare, and I dont like baking and Im picking faults right now, with everything.

Why cant I just go to the shop and buy the bread we need? Why cant they just bloody make it??? Im feeling miserable and sorry for myself and I want to scream and stomp my feet and throw things.

I hardly ever have days like this, everything thats been thrown our way these last few years I have taken in my stride and just gotten on with…. but today, I am hard done by, I am miserable and I want our school to have uniforms and I want shops to stock stuff we need and I want to be in Dubai not here and I want someone, anyone to come do my laundry because Im so friggin tired I think I could sleep for a month. Maybe two months.

And Im home sick, and I dont know where home is, or what Im missing and Im so upset and sad.

I want both my kids to go to school tomorrow and I want to be alone sometimes, even just an hour or two. And September is coming, and every September for forever she gets pneumonia, then again in October and November and bla bla bla and I cant do it anymore. Can I please just sleep instead…?

Im not depressed, honest. Tomorrow, or later or whenever I will be just fine. But sometimes I just bottle it all up, for so long and then I need to just let it out, a bit atleast. Then I feel so bad, because there are people out there with real issues, people who have terminal illnesses and others who are fleeing wars and orphans and all sorts, and I feel like such a selfish brat for complaining, I have no right to complain. Its not so bad being me really…. is it?

Deep breaths and all that. Tomorrow will be a better day.

If anyone knows of GF, CF, EF breadmixes, please let me know.

😦

Gluten Free in Poland

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….

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!!

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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Germs, school rooms and dreaming of a farm!

Not feeling very “bloggy” lately. I can honestly saw we are all exhausted.

End of May, I finally went to the hospital and handed all our papers in. So many hospitals working together on our case. I just wasnt ready to hand it in sooner. It looks like they will still want us to go to Warsaw to check something there. We have the unexplained signs of autoimmune activity and bla bla bla. Bla bla bla may seem a bit blasé, but I just cant manage more then that right now. Im tired of “it” constantly being what our life revolves around. Waiting now to see how often we need to re test her igg’s also.

On a very positive note, she has not had pneumonia since she was taken out of school. TOUCH WOOD (as she sits downstairs with a big wheeze and a cold). She even had the same 48 hour cold / virus that here brother had a few weeks back, and hers ALSO lasted 48 hours. I almost cried with relief. I had no idea her immune system knew how to do that!!

The doctors are hopeful that this break is all that we need, but lets see, only time will tell.

On the school front, we have our plan, and our back up plan. She will have tutoring in school 3 times per week without germy other kids around. Hopefully she will still be ok with this once flu season starts, if not we will have to take her out fully. Im ok with all of this, I have gone over the plan in my head a million times!

New house is looking fab, and thanks to my Pinterest research, our school room eats other peoples school rooms for breakfast! We LOVE the school room, its probably our favourite room! A couple of more things to do, then its all ready.

We had Celiac kiddos birthday party just a few days after moving in, and it was fab! I thought the preparations would send me in to a stress fit, but it really wasn’t so bad! Guess Im becoming a pro at catering to people the gluten free way. Even the corn free and egg free is getting a tad easier, although I do miss being able to buy bread!

Our biggest enemy lately is not gluten anyway, its those pesky germs that everyone carries around, the stuff that lives in peoples noses, the stuff that little kids sneeze out and cough out and touch and then attack celiac kiddo with. Ok, fine, nobody is attacking, but sometimes it really feels like it. Its SO hard keeping her safe without going overboard.

I go to the supermarket early in the mornings now when its not so busy, that way she wont need a mask, more times then one Ive changed checkout after seeing a snotty cashier sneeze / cough in her hand and then carry on moving peoples groceries to bags. I don’t even want to start thinking about the stuff we don’t see!

Im telling you, the only safe way to live is in a house in the country, where you grow and raise your own food! It used to be a sort of joke I told, but I am more and more serious about it as time goes by! haha (any excuse to wear wellies full time really).

So, thats us! 3 more days of school, then maybe, hopefully, we can all re gain some energy! Which might mean more blog posts. Lucky you 😉

-Linda

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The image is of a big scary germ. Obviously. Just incase you didn’t get it 😛

Bone Broth vs Stock

I see a gazillion people out there asking about the difference between broth and stock, and another gazillion who think its the same thing. It is, and yet its absolutely not.

See, they both do the same thing in terms of taste and flavour, but thats where the similarities end.

A stock and a broth start out the same way, but where as you would finish off a stock just a few short hours later, the broth keeps going for a day or even two to get all the valuable nutrients out of the bone and in to the broth. Stock is great to flavour soups and sauces, broth can be used in the same way, but oh my goodness (pun intended) the nutrient value is just oh so much better.

Can you buy broth? Not really unless you find a stall that sells it, most broth you find in a supermarket etc is actually stock. I used to make all my own stock anyway, so taking that extra step to make broth was not a big deal at all. The only adjustment I made was investing in a slow cooker, Im just not comfortable leaving stuff on the stove while I sleep or when I leave the house. A slow cooker is a safer option (in my head at least).

There are probably as many versions of stock / broth recipes out there as there are personalities, but here is my version!

In to a large pot or slow cooker, put:

  • 1 good quality chicken, organic if you can get it, if not, at the very least get free range.
  • 2 small onions, no need to chop, just slice in half
  • 3 carrots, if organic, don’t bother peeling, just wash and pop the whole thing in (if not organic, peel and trim the top and bottom off).
  • 3 stalks of celery, if organic, pop in as is, if not , trim top and bottom off.
  • 1 parsnip. Im not a huge fan of parsnip, so I add only one, you can add two, but be aware if you add 3 the broth will taste of parsnip.
  • 3-4 garlic cloves (optional). No need to even peel, just plop them in the pot.
  • a good amount of good quality salt, I use himalayan pink salt, use whatever you usually use, if you are a “normal table salt” user, take some time to investigate the health benefits of a good quality salt. You will thank me for it. I promise.
  • Black pepper, yum. It needs it, add a good amount.
  • Add enough water to cover your chicken.

NOTE: You are supposed to add 2 tablespoons of apple cider vinegar to help the bones release their nutrients, I don’t always bother doing this with chicken, but for other bone broths you should absolutely do this and let the bones sit in the cold water with the vinegar and bits in for about 30 minutes before turning on the heat.

Set your slow cooker on high, or if in a large pot on stove, bring to a boil. If your chicken is good quality there shouldn’t be much scummy stuff to remove, but look out for it and spoon off as needed (Scummy stuff looks like dirty dishwater, browny bubbly stuff, its the impurities leaving the chicken). Once this is done you can lower the heat if its a pot on the stove, leave a slow cooker on high.

Slow cooker version:

After about 4 hours, remove the chicken from the pot and take the meat off. Add all the bones and bits back to the pot. At this point I also like to taste test and add more salt and pepper if needed. Lower slow cooker temp to low. Add more water as needed. Then give your broth another 12-24 hours. Keep an eye on it and add more water as needed. Once done, strain the bits out and discard (I use a rice strainer for this). If you want to remove the fat you can let it cool in fridge and then remove the fatty top layer. I leave mine in and freeze in small portions.

Stove top version:

After about 1-2 hours, remove your chicken from the pot and take the meat off. Add all the bones and bits back to the pot. At this point I also like to taste test and add more salt and pepper if needed. Make sure your broth is at a very gentle simmer, on my cooker lvl 2-3 is perfect. Add more water as needed. Give your broth another 12-24 hours. Keep an eye on it and add more water as needed. If you need to go out for say 2-3 hours, you can turn the heat off and turn it back on once you return. If you sleep with the cooker going, make sure you add water before bed, and please be careful.

Once your broth is done, strain the bits out and discard (I use a rice strainer for this). If you want to remove the fat you can let it cool in fridge and then remove the fatty top layer. I leave mine in and freeze in small portions.

For stock:

Boil for 2-3 hours only after removing the meat. This is insanely good still, its just not broth.

How to use it:

Regardless of if its stock or broth you made, you can use it the same way. I add it to anything I can think of! I use it to boil my quinoa and millet, I use it to make sauces and obviously soups. I also drink it in a cup in the evenings, and its actually delicious! Add a spoon of tumeric for even more health benefits.

Variations:

Use beef, pork or lamb bones (pre roast for yummy flavour). Boil these for 24-48 hours. After discarding the bits you can save the bones and use them for a second batch!

Add herbs, ginger, and other flavourings.

Always use good quality bones, you don’t want the hormone fed on antibiotics standing in the dark animal bones, you want the happy kind, from animals who roam free and eat grass the way nature intended.

Happy brothing!

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I added tomatoes in the one above to see how it would affect the flavour, pretty nice 🙂

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Luckiest girl in the world. 

Sitting in school right now, and I feel so incredibly lucky and fortunate. Its good to have that feeling back. We just moved in to our new house and its totally awesome. Celiac kid just started her one on one tutoring in school this week. This means she will outschool / homeschool but school will handle her maths and english and art leaving me to stress ALOT less!

They have been so so awesome and from day one (over a year ago) they have agreed to everything I asked for, changes have been made to classrooms to keep them gluten free and teachers have been there with me keeping me informed every step of the way.

I think at times I go on so much about the food policies people may think I (we) dont have a supportive school. I DO have a supportive school, they are 110% there for us as a family, the school councilor and the teachers give my son extra support when he needs it and my input in to what is safe is always asked for. FABAROONY! Always. Everyone from the admin staff to the principal have been amazing.

Celiac kids teacher is everything we could have possibly asked for and then some! I cant ever thank her enough for how incredibly included she has made A feel, even at those times that she has been different.

But we must remember all the kids who are not so lucky, the food policies that I believe should be in ALL schools in all countries are more for them then us. Not all mums have the time or energy to spend on school matters that I do. With food policies in place many issues in many places would not be issues at all.

Today I focus on the good and the good only, and in 15 minutes me and celiac kid go home to unpack some more boxes while she chit chats about her 1 hour lesson. Its like we have our life back! I am so so grateful.


 And thanks Mr.  K too 😉

Linda

Wiosna visit.

My last visit to Wiosna they had 53 children.

53.

And thats one orphanage in this area, there are many more. 21 babies, 7 below 4 months old. Now, those of you who have kids know that buying nappies (diapers for the American readers) is expensive, and no matter how much you stock up, they run out super fast. Imagine then buying nappies for 21 babies. I mean, you could fill 2 cars and it will still run out in a heartbeat!

Then the formula. The amount needed is unimaginable to me. While my school is collecting monthly now for them, it is just not enough. I have gotten another school involved also, and they do bi monthly collections, and there is a Polish lady collecting in her daughters class in yet another school. But what we bring them, its still not enough. Its like feeding a hungry dragon, now matter how much you give, the dragon is still hungry. Or like Elsbieta (who works there) says, its like a big black hole you can never fill. But try we must.

I wanted to set up crowd funding for them, but I was hoping to raise large amounts and didn’t want to do it in my name, I wanted the funds to go directly to them, but sites such as Just Giving do not let you sign up as a charity from Poland. Elsbieta is looking in to alternatives, but at the moment, it seems more or less impossible. Every site I checked so far does not let Polish charities register. So I decided to go for something smaller, just while we wait, to fill that big black hole a bit, but sites such as ‘go fund me’ are also not an option, as again, I can not raise money from Poland, only give! I am left with 3 other sites that I am looking in to at the moment. I desperately want to give my friends the option to help, even if its just a little.

I will update you all on this later on, now I will just leave you with some photos. And yes, I have removed the children’s faces. While they are all absolutely gorgeous, it is not right to reveal their identities. (But don’t I look good with a baby!!?? I might need to adopt a few!) -Linda

http://dzieci-wiosna.pl/index2.php