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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On a pancake mission – day 1

Gluten free was easy. Gluten free pancakes taste amazing and I have yet to meet someone who doesn’t love them (they are better then gluten ones, trust me!). But then you go almost completely lactose free and egg free and you sort of sit and wonder, if pancakes are lactose free, egg free and gluten free, are they still pancakes?

Well, after almost a year of being pancake less I decided to go on a pancake mission.

Pancake 1

This is a combination of several recipes I found online, the base recipe(s) had more milk and fancy flavours, they also had gluten. So, this is what I did.

  • 1 ripe banana
  • 1,1/2 dl gf flour (I used a cake one rather then a bread one, but whichever should be fine)
  • 3dl milk (lactose free or whatever tickles your fancy)
  • 1tsp baking powder
  • a pinch of salt
  • a squirt of evoo (or melted butter is fine if that works for you), a bit in the batter and some more for frying

Mash the banana in a bowl and add other ingredients, whisk well so its not to lumpy. Fry as you would a “normal’ pancake.

Verdict: Well, there is one thing in the world I will not eat or try ever, and its banana. I apparently didn’t like it even as a baby. My mum forced me to eat one in childhood at some point and I promptly puked. I cant even stand the smell. So, I almost died having to mash the thing. Honest. But almost dying is worth it for my kids, so mash I did, with my head turned away and running to the hallway for breathing breaks. I cant tell you what it tastes like. But Celiac kid ate almost all of them! She was screaming and jumping up and down from being so happy about pancakes, she says they are the best everrrrrr! I guess thats a pretty good verdict 🙂 From a cooking point of view Id say they burn pretty easily, I had to keep the temp lower then “normal” pancakes. They were also a bit runny, so a bit bigger then what we usually make, but maybe more flour would have fixed this. Anyhow, daughter gives these a 5/5. I wont rate them as I didnt try, and big brother is in school so missed out on these.

Pancake number 2 tomorrow!

-Linda

EDIT TO ADD: I managed to save 1 little pancake which big brother ate cold after school, he gave it a 6/5 and drew me a “best pancake maker in the world” certificate. I think we are on to a winner!

Dont forget to “like” GlutenFree & Me on Facebook!

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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Being in a gluten free cult……?

Its been a while since I blogged about our journey. I feel like there is nothing new, just more of the same….

Christmas came, we were all sick. Celiac kid had another pneumonia, older brother had a virus with high fever for a week, and I had a bad throat infection. Merry Christmas to us!

I finally got around to open our letter from Karpacz and make the next set of appointments, I just wasn’t emotionally ready until now. We already went and saw the celiac specialist, and he is convinced her Celiac is WELL under control and all her vitamin levels etc point to us doing a great job in not exposing her. He is putting the not growing down to long term use of steroids, and he agrees with the Karpacz specialists that there is probably something wrong with her immune system. We are now booked in to go to yet another hospital and run a series of tests there. If they come up with nothing there, there is one last specialist in warsaw that may be able to help us…. my stomach  my stomach is in knots just saying this. After being told about the next hospital stay I felt like I couldn’t breathe for two days, I was walking around my house just trying to remain sane…. the stuff in my mind, the pressure, the thoughts whirling around… its unbelievable. How the hell do you stay normal through all this… how do people cope? 

Needless to say the whole family is under a huge amount of stress right now. Lost it with some idiot online the other day who called people who eat gluten free “part of the gluten free cult”. People really need to think before they speak. Such stupid, idiot remarks are totally unnecessary. Im pretty sure no one would say “insulin cult” about diabetics or “chemo cult” about cancer patients… nooo, because that would be offensive. Joking about Celiac and glutenfree should be no different.

My family have been through so much, we don’t need belittling by total strangers (or assholes!).

Im tired beyond belief. Not the kind of tired that can be fixed by sleep, but the kind of tired that leaves you spending a whole day just sitting and staring and doing nothing because you cant get your head together.

What else? Oh yes…. big brothers Celiac test came back. Inconclusive.

I mean, hello!!???

I actually had to laugh, its like some great big joke.

Big brother will now eat gluten for one more month with more added in as he may not have been eating enough of it, then we will do the bloods again and also the genetics and if needed the biopsy. He’s being brave, but he wants to stop eating gluten now because he says he feels confused. Im guessing he’s trying to describe brain fog? (A common symptom in celiacs). Either way, its all good, we just need to know for sure so we can do the right thing for him. Usually he eats 98% gluten free anyway, only has gluten at friends houses. Obviously if he’s celiac that cant continue.

So, thats my update.

Happy New Year!

-Linda

Ooooh, and we had snow and made snow angels!! 😀