Things make so much sense in hindsight!

Posted on 20/11/2013 by lindaFB

Thinking back, of all those things, the days out, the screams in the car on the way home after having eaten Pizza, me in tears thinking ‘another family outing ruined, why do I bother’.

Is there any guilt? HELL YES! I feel guilty all the time, there I was, angry and upset and frustrated with her, and there SHE was, obviously (in hindsight) in PAIN and having a full on reaction.

Any trip in the car was a nightmare, I often had to use all my strength to force her in to her car seat, we had the back arching and the screaming. Funny now that I think of it, I used to give her biscuits to make the car rides easier… and the calm never lasted! I actually cringe at the thought now. POOR POOR girl! Again, this is why I do what I do. Because we just didn’t see it, we just thought we had a ‘very angry child’, we had no idea that she was ILL. We had never heard of Celiac disease. In some ways I feel we failed as parents, simply because we were not educated enough. Its every parents duty to know about ‘stuff’. It took for vomiting and diarrhoea to become so frequent we needed weekly IV’s for us to realise she wasn’t just an ‘angry kid’. In our defense, the doctors didnt spot it either. Our peadiatrician was always commenting about her big big stommach and skinny skinny arms and legs…..

Another DR in the ER SAW her stomach literally ballon up after eating (gluten) and told me to tell the paediatrician upstairs, but still no connection.

Obviously…. in hindsight…. its all as clear as glass!

Hope this blog may help someone else to not have to see these things in hindsight. With over 95% of Celiacs remaining un diagnosed I bet we all know at least ONE undiagnosed Celiac. Maybe your neighbour has an ‘angry kid’. Hit share, hit like, here or on other Celiac blogs posts, help us, the Celiac community, to reach other families like mine, maybe if we had had our diagnosis sooner things would not be the way they are today. Maybe we can prevent that happening to someone else.

Fingers crossed.

-Linda

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3 weeks in school and only 1 sick day!

Posted on 08/11/2013 by lindaFB

So little miss has had a cough, a sniffly snotty nose, then a pretty bad cough which scared me half to death as she was doing her rapid breathing wheezy thing that usually ends in a hospital stay, and then got better – ALL ON HER OWN!! And no temps, at all!!? This doesn’t happen. Fluke..? Perhaps, but all I can say is GO IMMUNE SYSTEM 😀

Just had to share the good news as I know many of you are wondering. Keep those fingers crossed!

-Linda

Touch wood and all that, but so far so good.

Contamination, what happens?

Posted on 05/11/2013 by lindaFB

Just like all Celiacs are different, so are everyones reactions. There are 200-300 (depending where you read!) documented symptoms relating to Celiac. Very often we talk about what happens if a Celiac eats gluten, but what about contamination, not really so much from eating, but from the environment or contamination somehow in the kitchen?

Yesterday I picked up a grumpy child from school. She told me her tummy had hurt during the day. Knowing what this means I was instantly ‘on my guard’. When she’s been contaminated we walk on eggshells…. We got home, there was some wind. Hey, this is a gluten free blog discussing celiac, so Im just going to say it, there was farting. I call the farts gluten farts. See, there is normal farting and there is contamination farting. The contamination one is sometimes deadly. You smell it in the car and know you got to get home QUICK, because soon the pain and crying could start. OR, like yesterday, its not so much the smell, but the amount of actual air! My tiny 4 and a half year old can do farts that last like 5 seconds! Then she laughs, and blames her brother, or daddy, or the dogs. Then she does another, and another. I guess the bloating has to come out some way. When you are 4 and a half, long loud farts are pretty cool. Not so much when you are a teen I guess!

Then there is the reason we walk on eggshells. Her mood. The smallest thing can make her angry or upset. From angry, we have a very very thin line, if crossed we have a tantrum. This is not a normal tantrum though, this is a gluten tantrum, and in a gluten tantrum no telling off, pleading, time outing, or reasoning will make any. difference. whatsoever. There is a reaction in her brain, its something she can not control. You just have to reel in all those feelings that you yourself feel, bite your tongue and try to be as nice as you possibly can, preferably before the line is crossed and the tantrum comes. You can discipline bad behaviour, but you cant discipline a reaction in the brain! Im not even sure of all the ins and outs of what happens in the brain, but I asked some of my adult Celiac friends who also suffer emotionally when contaminated. Linsey says she feels so emotional she cant help but cry. Once she said she felt so down all she wanted to do was hurl herself out of a window. Mel the same, she called me in tears one day and said, ‘if this is how A feels, then please go easy on her, because I cant stop the tears’! Because how, if an adult feels like that, can we expect a 4 year old to understand whats going on and try to ‘be nicer’? Remember, we are talking about contamination here, not eating something with gluten ‘on purpose’, if A or Linsey or Mel ate something with gluten in it the reaction would be far far worse.

This morning the mood continued. She didn’t want to put her jacket on, she wanted help, then there were endless tears, endless. I know my girl, and most of the time I know which is gluten behaviour and which is not, but its hard to parent a child like A when she’s been contaminated. Its also hard to try to explain to the sibling why sometimes the celiac kid may not get a time out when at other times she would. Sometimes I get it wrong, sometimes I think she’s just being a stubborn 4 year old when in fact she is having a reaction. All you can do is try your best, and dish out extra cuddles as often as possible.

So what happened yesterday? Why was she unwell? She eats only food from home, her table is wiped down by adults before she sits. Who knows, there could have been a crumb somewhere, maybe she held hands with a gluten eating kid that hadn’t washed properly, maybe she stuck her fingers in her mouth. Maybe it was the yogurt that she had eaten the night before, because although usually A’s reactions start within 30 minutes or so, they don’t always. These things happen, they will happen from time to time, all we can do is try as hard as we can to prevent it. There is no blame here. I mentioned it to the teacher this morning, but that was that. No matter how hard you try, sometimes it just happens anyway.

So the next time you see me with my hand wipes cleaning the shopping trolley handle or the table in a cafe or my child’s hands, please, spare me the eye roll and mind your own business, this is what we do, to try our best to keep our girl healthy. And no, a little bit of exposure will NOT make her stronger.

-Linda

Just a small add here, please remember, that even for a celiac who doesn’t react as strongly as A does, there could still be damage on the inside after being exposed, so when we prepare foods for a Celiac there is no ‘how sensitive are you?’ coming in to the equation. We need to be 100% strict no matter what.

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Before we were diagnosed……

Posted on 08/10/2013 by lindaFB

Before we were diagnosed… life, simply put was hell. Most days ended with me in tears, some days even started with them. I am not a very patient person at the best of times, but a child who screams all the time…. who is NEVER happy… no matter what you do! You just learn to tune it out! I was walking around like a zombie. I got used to evil looks from other parents (CALM YOUR CHILD FOR CRYING OUT LOUD), comments in malls (Oh its YOUR child thats been screaming for the past hour *smirk*), having to leave cafes, restaurants, play dates, birthday parties. Never being able to stand STILL, if I moved, it wasn’t to bad, if I stopped…

Obviously we all suffered. Big brother suffered as much as me, if not more. Poor boy, always had to cut things short because of his sister. Didn’t get the attention HE needed, because we were all so pre occupied with the screaming, with the shushing with trying to stay sane and keep it together.

Its hard to look back, and the memories fade, but its important to remember, its important to TELL these stories, because there are still so many more kids out there like that, ones who have yet to be diagnosed, parents at the end of their tether about to have some kind of meltdown….

So I wanted to show you this drawing, its by my son, he drew it when he was in FS1, a few months before his sister was diagnosed. The comments in the picture are by the teacher.

-Linda

Pizza! There is a new contender in my kitchen!

Posted on 17/09/2013 by lindaFB

There is one food that is always mentioned more then any other food when we have meets and events, and yup, its pizza, it even beats bread hands down!

Restaurants who serve a safe gluten free pizza will have visitors from far far away, even a not very safe gluten free pizza will draw some attention (hopefully the establishment serving it is honest in telling their customers its not safe for Celiacs), but there is one place to eat pizza that absolutely beats all the others, and its home! First of all, I know what Im doing, so even if there WAS gluten in my home, chances are I wouldn’t contaminate anything, second of all, there IS no gluten in my home, so in order to contaminate it Id have to run over to the neighbour and rub my food on his kitchen table…..

In Europe you can buy frozen ready made pizzas fairly easy, here in Dubai, you will be lucky to find one when you need it.

I have tried most of the ready made bases available, and they are good, ok you know. But nothing to write home about. But the latest one I tried you can totally write home about! Its yet another one of Katinka’s gorgeous creations. Katinka is the owner and manager of GlutenFree-Supermarket, she is also Celiac and has an amazing knowledge about baking, often her creations are gluten / wheat/ corn / soy and dairy and egg free. How she manages to still make stuff taste amazing I will never know, but she does. She also NEVER takes shortcuts with products, ask her where any ingeredient comes from and she will be able to show you the package, its gluten free certification or a letter showing you its safe. I trust her 100%, there is noone else in Dubai I trust as much, apart from maybe myself 🙂 And skinny genie.

Anyway, back to the pizza!

The base is not the thinnest of bases, but its not thick either, you just pop your passata on top (I mix mine with some olive oil and salt and pepper), then add your chosen toppings and shredded mozzarella (Kraft is safe, no gluten), pop it in the oven and 10 minutes later (or a bit longer if you like it more well done) you will be enjoying delicious yummy pizza.

The base doesn’t go all grainy as it starts cooling down, nor does it ‘sweat’ and go all soggy. It actually keeps so well I was able to rescue one of the pizzas and send it to school for the kids lunch box the day after. They both finished their lunch 😉 Cant ask for much more then that…

Hope you all enjoy 🙂

-Linda

Direct link to pizza 😉 –click here–

Wash your hands!! (Please!)

Posted on 10/09/2013 by lindaFB

I have a gluten free home. And its REALLY gluten free. Every soap, every beauty product, every cleaning product and obviously all the food has been checked. It is 100% gluten free. But keeping it that way is not an easy task. When people arrive it can be hard to find a way to politely tell them to wash their hands without offending. Of course old friends know and go and wash as soon as they arrive, but I always struggle telling new people. Even worse, when they arrive with kids and one of them has a biscuit in their hand! I thought about this a lot lately, especially now that I’m moving to a new country and everyone I meet will be a potential new friend. I don’t want to offend anyone the first thing I do! So, I came up with a brilliant idea (if I can say so myself), SIGNS! Of course signs will do the trick, you know the kind, Home sweet home somewhere in the hall way, only, mine will look a little different! What do you think? I will have to work on the Polish version, and get some nice white frames.

-Linda

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Major decisions about our future.

Posted on 31/08/2013 by lindaFB

Seems to me some Celiacs are A OK as soon as they go on that gluten free diet, others struggle and suffer, no matter how well they stick to the diet. I have met hundreds of celiacs by now through my work with Gluten Free UAE, and it seems to be that its not how long you were sick for before diagnosis, but how SICK you got before diagnosis that makes a difference. Those who were very very sick, are often the ones that struggle after (no research on this that I know of, just how I perceive it from the Celiacs I have met). My own little Celiac is one of those that got extremely sick before diagnosis, and she is also one of those who have struggled post diagnosis. Yes, she is better, yes, she is doing great in many ways, but she also gets sick alot, not sure if she gets sick more often then your average 4 year old, but she certainly gets sick ‘properly’. She has had a ton of hospital stays. At the age of 4 she has had so many pneumonias we are starting to lose count and only count the severe ones! Although she is doing great in growing and developing, each pneumonia sets her back, and we cant afford to many set backs, she has to much catching up to do! Her energy levels are often very low, as they would for anyone fighting illness. At times I have to carry her in to school from the car park, as she just doesn’t have the energy to walk. As any other tired 4 year old, the tiredness makes her cranky. She is on preventative steroids and we keep her indoors as much as we can to protect her from the dust. Her oxygen levels are often low and the main reason for repeated hospital stays. Her immune system seems to be working on overdrive and she often has unexplained temperatures, sometimes twice a week!

We left on our Europe trip with extra liquid steroids and antibiotics from the doctor, the oxygen levels were low, but not low enough to be admitted, but I fully expected to have to start her on the antibiotics a couple of days later. BOY was I in for a shock.

First day in Poland we walked to the shop, because in Europe, people walk places! I brought the push chair because of course I didn’t expect her to be able to do the full walk with her wheeze. Well, she walked all the way to the shop… and then she walked all the way back! I lifted her up to give her a hug and listen to her breathing, and there was NO WHEEZE WHATSOEVER!

Our little girl spent the next 1 month and 1 day without a single wheeze, she walked, she ran, she jumped, and not once did I hear the familiar words ‘mummy, Im tired now, I need to rest’. Not once did I have to carry her when her energy simply ran out. She was a different child. Even her gluten reactions were minor, we had a couple of cross contamination incidents and 1 ice cream incident, and she got over them so easily, so much faster then usual, and after the ice cream I fully expected an ear infection or something else to come – thats what usually happens – but no, she was recovered fully in 2 days!

We returned to Dubai, and I was hoping the wheeze would stay away, but the heavy breathing and a slight wheeze was back in 4 days, a couple of days later the first unexplained temperature. Clearly our Celiac does not do well here.

So I guess the title of this post is unfitting, because our decision wasn’t major at all, it was a total no brainer. We are going to go and live in Europe for a bit, hopefully the air quality there will help her, and this girl really needs all the help she can get!

I am gutted. I love Dubai, I have loved it since the first time I set my foot here in January 2006. My children were born here, I have my home, my friends, my heart here. But health has to win. Hopefully in a couple of years things will be different, maybe we will even be able to return. Who knows.

I believe you chose your reactions to everything in life, and I chose not to remain gutted. Instead I am embracing this move fully, I am exited, the kids are exited, a new adventure.

And it sure will make for a pretty interesting blog wont it 😉

-Linda

Gluten Free and 4 Birthday Parties

Posted on 12/07/2013 by lindaFB

Originally Posted on Gluten Free UAE in May 2013

Birthday Party. Just that bit alone right there is enough to make many parents take a big deep breath.
Birthday parties are supposed to be fun and enjoyable for all, but for the parent of a child with a special dietary need it can be a hugely stressful event.

Just as every Celiac (intolerant / allergic) child is different, so is every parent of a Celiac child.

While some parents are happy with a host preparing food for their child, others are not, others again cant be. Because no matter how hard a host may try, the child will almost certainly get sick.

I get many people approach me to ask what they should feed a gluten free guest at a party, and my reply is always the same, ASK them, ASK the mother. Because what is right for me and my child, may not be right for someone else.

My own child is hyper sensitive, so for someone to feed her would be an absolute no go. I will make her food thank you very much, less stress on the host and less stress for me, and above all, SAFE for my child. People sometimes get offended when you don’t want them to cater to your child, but lets remember here, that as little as a part of one stray crumb can cause a reaction, thats as little as a speck of gluten stuck in a chopping board. A tiny speck not because your chopping board is dirty, but because its been used for gluten foods. We all have to remember here that this is not about being polite, its about being safe. So yes, Im happy to give brands of gluten free sweets for a goodie bag or list gluten free ice cream brands and drinks, but the food, thats my department and I wont have it any other way.
Off course, this means that every party we go to, I have to replicate all the party food best as I can. If the other kids are having mini burgers, pizza and chocolate cake, so will mine! Lots of work on my part, but I will gladly do it to have my child not feel left out.

There are parties and there are parties. I used to love going to birthday parties in someones home. Sit and chill with the other adults while the kids play. Those parties now look very very different. There is often a buffet set up with food, which means children and adults are all helping themselves throughout, often running around with a biscuit in their hand. Its a total gluten horror scene when you are the parent of a small gluten free kid. I often find myself stalking my child with my packet of hand wipes making sure she doesn’t put her fingers in her mouth. Over reaction? I challenge anyone who thinks so to spend 5 days with my daughter after she is contaminated.
Much better now the play area parties, the kids play for an hour or 2, no food in sight, then they all sit nicely and eat before going home. Easy to control.

What about the gluten free childs own birthday? We have had 3 now, and all were great, a learning curve for me and also goes to show that even the parent of a hyper sensitive celiac can learn to relax if only just a little 🙂

Party number 1.
We were just over a month in to our diagnosis and Celiac kid was turning two. I was still very much learning the ropes but I had made the house a gluten free zone. I was not yet the expert gluten free baker / cook that I am today and I was very very worried about getting things right while keeping her safe.

I ended up having a small birthday breakfast, the only people invited were 4 close mum friends (and their kids) who ‘got it’ and who were all super supportive. I made fruit salad, coffee & tea, had biscuits and crackers available, and for the cakes I did a chocolate fudge cake (Swedish kladdkaka) and an ice cream cake. The party was a success and as the setting was small and intimate in a gluten free environment we were all able to relax.

Party number 2.
After just over a year of being diagnosed we were ready to take on the bigger party in a gluten environment. I went with the easier option and we went to a play area. The other kids ate gluten foods and my kid ate her food, then they all ate a gorgeous gluten free chocolate cupcake with pink icing and princess decorations. I went with cup cakes because I was nervous about the blowing out the candles part of the party with so many young kids, the kids often help to blow and cant help themselves but may also touch the cake possibly contaminating it with gluten. Cup cakes made me relax because I was able to give birthday girl a fresh cup cake when serving with no risk of contamination. None of the gluten eaters even realised they were eating gluten free so all in all a success again.

Party number 3.
This is actually not Celiac kids birthday party but big brothers. He wanted to have a party at home, and with us being gluten free it was off course a gluten free party. Gluten free food is expensive, and hard work doing it all yourself when you cant get anything catered! With some imagination it all worked out. We did chicken drum sticks, crudites and chips and dips and a pasta salad. Then big brother wanted cup cakes because thats what his sister had had. A very successful party and the first time I catered to many people gluten free in my home. It was so nice watching my kids play at a party and just be ‘normal‘. No hand wipes in sight!

Party number 4.
We are experts by now. Celiac kid wants a BIG party. So its off to a play area again, to much stress doing all the food myself again. My daughter wanted just one thing this year, to have a party, a BIG party, and to eat her cake. So I put my big brave pants on and ordered a cake from skinny genie. We are not easy to bake for as we always aim for 0 gluten, but skinny genie did a great job, no food colourings, no artificial flavours no ingredients that may have come in to contact with any gluten at any point during the manufacturing process. They even managed to make it pink, and with chocolate. When my daughter saw the cake she gasped and said, ‘Mummy, is it mine? Can I eat it?’ She was so so exited. She didn’t stop smiling for over 2 hours, then ate 2 huge pieces of cake. I fought hard to blink back tears.

As parents all we want is for our children to be safe and happy. It IS possible to make sure they are both, at the same time, although sometimes it takes some extra work. Im exited to add more parties to our list in the years to come. Please keep inviting the food intolerant / allergic / celiac kids to your homes, talk to the mums, we are happy to help.

-Linda

Cake by skinny genie Dubai,
tel 04 33 888 98

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Why we made our house gluten free.

Posted on 12/07/2013 by lindaFB

Originally posted on Gluten Free UAE in October 2012

I often get asked about why our whole house is gluten free, are we all Celiacs? If not then why aren’t the rest of you eating gluten? Well, let me explain how I see it…

Our Celiac is 3 years old. Still a young child. A young child who doesn’t yet fully understand the ins and outs of cross contamination. But thats not the main reason we have made our house gluten free. We made our house gluten free because we want our child to feel normal. Because she is! She’s just a normal kid, she likes pink, she likes to dance, she likes to play football with her brother and she loves squinkies! She’s only different from most 3 year old girls when it comes to food. And she is only different when we are out.
Why? Because we, her family, have decided that this diagnosis is not hers, its ours. We are a Celiac family and this is how it has to be.

I personally believe that every Celiac has the right to feel safe in their own home. If there is gluten in your house, no matter how many systems are in place, you always run the risk of contamination.

Cooking, in a mixed house where both gluten foods and gluten free foods share a space is extremely stressful, or at least it was for me. Watch a pot of pasta boiling. Did you know water can jump out of the pot and jump in to the pot next to it? Never mind the spoon confusion, gluten free to the right, gluten to the left, gluten free to the right, gluten to the left…. then the phone rings, the doorbell goes, the dog barks, older child spills a juice and which spoon was it again???

For a Celiac, less then a bread crumb (or a very tiny bread crumb) is enough to cause a reaction. For my older (non Celiac) child this took the enjoyment out of eating his chocolate cupcake, I was a nervous wreck, right there with my tissues, waiting to clean any crumbs, ‘lean over the plate, careful, careful…. don’t touch anything, come, now wash’. I was on edge, worried, and most meals I had tears in my eyes when she asked for something she couldn’t have.

We lasted like this less than 2 weeks. The decision to make our home a safe home for our girl, was the best I ever made. Now we all eat chocolate cupcakes together and the crumbs can go wherever (although my cleaning nerve does twitch a little), we all eat the same food, and everyone is able to open any cupboard and eat anything they want. It is all gluten free, all safe.

From the work I now do with Gluten Free UAE, it seems to me that those who have a mixed house (gluten and gluten free foods sharing a space), have a much more limited diet with less variety. Why buy variety if its just for one person anyway, its a waste if it goes off?

In the beginning our food costs were sky high off course, they over doubled once we all went gluten free, now, a year and a half later, they are back to almost the same as they were when we were gluten eaters, and I must tell you, we are all, much much healthier.

If you are still mixing products in your home and finding it a challenge, try making your house 100% gluten free for a while – it may just work for you too – if not, you can always change back 🙂

-Linda

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GlutenFree & Me…. (and everything in between!)

Expat family, living with Celiac. Our little girl also has Ehler Danlos Syndrome, Osteopenia and hypereosinophilic syndrome. Ongoing investigation for Lupus & RA. Involuntary homeschooler and spoon collectors.

Tag Archives: Celiac

Things make so much sense in hindsight!

3 weeks in school and only 1 sick day!

Contamination, what happens?

Before we were diagnosed……

Pizza! There is a new contender in my kitchen!

Wash your hands!! (Please!)

Major decisions about our future.

Gluten Free and 4 Birthday Parties

Why we made our house gluten free.