Blood tests, ambulance rides and extra oxygen.

Well, I guess I knew it already as I was writing my last blog post…. we got to the clinic and they wanted to call an ambulance to send us to hospital straight away (in my opinion a slight over reaction on their part). I refused the ambulance (why scare the children more then needed?) and drove home to grab bags and iPads and food. Dropped son at neighbours and went to hospital where we were admitted.

This latest hospital stay was actually the smoothest one yet, maybe because I am getting so used to them? Or because I know exactly what we need? I actually have a bag thats always partly packed in a wardrobe, likewise we have a small bag partly packed for son. After this latest stay the bags will be improved further, but they sure do help a lot, especially if someone else has to go to my house to get stuff.

The hospital stay in itself was eventful…. Every test they could think of and then some has been done. It seems Celiac kids haemoglobin is high, her body responding to oxygen levels that are too low and trying to adjust them….. clever on her body’s part, but not good for her. The pneumonia was also a bit of a mystery, a strange kind, very severe, not the kind of pneumonia ‘normal’ people get. Well, my daughter is anything BUT normal, haha (that haha is mildly hysterical by the way). Its almost as if she enjoys playing games with science, because her test results are always a bit strange and baffling.

We were sent to a different hospital to be tested for Cystic Fibrosis. Its a sweat test. Above 60 is positive and below is negative, but a negative should really be below 30 or it needs to be investigated further. Celiac kids result was 49.

I am calm. Hubby is stressed. And I remain calm. Sortof. Celiac kid is super exited because the trip to the other hospital was by ambulance, and the super cute ambulance guy gave her both lights and sirens the whole way after she asked to hear them! Haven’t seen a smile like that in ages!

Normal people don’t GET this many pneumonias. Is it still her RSV as a baby giving us crap or is it the celiac and the crappy immune system being silly? At this point I think we need more answers, because if my counting isnt completely off we are now at something like 11 pneumonias, a handful of bhronciolitis and countless upper respiratory illnesses.

I actually think we struck gold at this latest hospital visit, because they are as concerned as I am, and I didn’t have to be assertive (read bitchy) in the slightest to get some action.

We were admitted on monday evening and they finally let us go Saturday evening after some straight talking to from hubby. They just cant feed a celiac kid in a hospital here, and if you really want someone to get better they need proper food! Thankfully her oxygen levels weren’t super low so she was only on 1-2 litres until Friday then she managed ok without.

We have been back to the hospital daily since. She is having her last antibiotics today. Next week we go to a mountain town that has a specialist hospital to be admitted for a few days, there they will check her lungs properly and hopefully before they let us go we will know more definitive answers as to why she keeps getting this sick.

We did the Cystic Fibrosis genetic test too, Im guessing they will repeat the sweat test next week also. The genetic test only checks for the more common genetic mutations but around 90% of Cystic Fibrosis should show up in this. To be honest I don’t really trust the sweat test anyway because I’m so used to my daughter having results that aren’t ‘normal’.

I wasn’t really going to write about this at all, but then I figured that its probably good to write about it, because no matter what the results are eventually, our story can probably help others. Much of the information about cystic fibrosis is pretty scary, but to be honest, if she does have it, then we already lived with it for 5 years anyway, so putting a name to it (whatever it may be) can only be a good thing so that we can help her. We are obviously hoping its something else, but lets see.

Trying to explain now why we are going to hospital without being particularly sick has been harder. Then the question ‘will they poke me?’, which breaks my heart, because obviously they will but I so don’t want to tell her this and make her cry! By poke, she means needles. She is still bruised black and blue on her arms from the IV going in last week, her veins kept bursting and it was only attempt 5 that was ok!

Anyway, thats whats going on with us. Hopefully you are all having a better month then us.

I have decided to stay as positive as I can, feed the kids the best and most nourishing food I can think of and just breathe deeply as much as I can. Me losing the plot is hardly going to help.

– Linda

When your kid is sick all the time…..

Pneumonia. Again. No, it wasn’t the last one that didn’t go away, its a NEW one. A FRIGGIN NEW ONE LESS THEN A MONTH AFTER THE LAST ONE!

I carry on, I do, I clean, cook, comfort, give meds, check oxygen levels and massage her back and cook some more and clean some more, and try not to worry and carry on…….

Horrible evenings with low oxygen levels, I pack bags and cry a little in my bedroom or the bathroom, the older kid cries and asks what will happen to HIM if celiac kid goes to hospital again and I carry on and comfort and cook and clean a little.

People tell me Im so brave and strong and all that other bullshit and I just want to scream because Im not strong at all, I didnt choose this, it chose us and I don’t have an option ‘a’ and ‘b’ where b is ‘lie on floor and do nothing’, so I carry on, that doesn’t make me strong, it makes me a mum. It makes me Celiac kids mum. And at times, I feel like this is it, this is our life, because it seems like we never get a break from it no matter what we do.

Im so tired, tired of doctors and tired of second opinions and people, PEOPLE! The ones who knows someone who knows someone who’s cousin had a kid like bla bla bla and have we tried bla bla bla….. I know these people are just trying to help but Im so freaking TIRED of all of it. Its not like we have sat on our bums and not done whatever we can to try to change this… we moved country for crying out loud!

I carry on, I try to live, I plan things and know they will probably be cancelled one way or another anyway, I clean , I cook, I carry on and in my head Im screaming at the top of my lungs because it is just so fucking UNFAIR all this shit, and how the hell can a 5 year old girl have had what, 9 ( or more ? )  pneumonias and I don’t know how many upper respiratory infections and bronchiolitis??? People DIE from pneumonias!! I am not strong, I break inside every time she is sick, how many times can you have pneumonia and actually be ok at the end of it? How many times can your oxygen levels drop THAT low with your heart having to beat extra hard and fast to make up for it and still be ok?

I am so tired. Not tired like I can sleep a bit and fix it, not even pregnant drewling on your chin kindof tired, but utterly exhausted, and if there was an option b to lie on the floor and just lie there forever and ever I would probably choose that……

But instead… I choose option a…. I carry on, I clean and cook, and cry a little in the bathroom.

Tomorrow allergist appointment and ‘normal’ dr. appointment, and off we go and carry on and bla bla bla….

Linda

3 pneumonias in 9 months

I mean seriously, enough already???!!! How many steroids and breathing aids do we need to use for all this crap to stop??!! Poor Celiac kid just cant catch a break, why??!! If I could take all these pneumonias from her and have them instead I would, only I don’t know how anyone who’s had 3 pneumonias in 9 months can even function?? Yeah, so the pneumonia came before my post earlier (I didn’t want to rain on my own parade), and we caught it so super early she was able to continue with school with just one day off, but still, she must be absolutely exhausted! How can anyone grow and live and function when all their energy goes to fighting bloomin’ pneumonias? On top of the pneumonias poor kiddo now has bone pain from having been on steroids so long. Can we take her off the steroids? No, because then we would be looking at more pneumonias then 3 in 9 months… we cant win here, and poor kid can hardly walk down the stairs properly because her legs hurt! Im tired of seeing doctors and getting second opinions, and Im even more tired of every bloody doctor having a different opinion, who are we supposed to believe? This is our child’s life we are talking about! Now the latest dr. didn’t want to prescribe the tablet that really helps her, because she wants her to see another allergist, another doctor says she can take the tablet long term no problem, yet another says it should only be used short term. So who am I supposed to believe? I know the tablet helps her, I know that, because every time she comes off it she gets sick, so just prescribe it please! I don’t want my kid to be on every medication under the sun, but we need to stop these pneumonias! Not all people with pneumonia survive so seriously just give us the darn tablets! Never mind then the money we fork out on all these doctors visits… bah… its very very lucky we can afford to, not all are so fortunate.

Anyway, rant over. If anyone knows of an exellent paediatric pulminologist in Wroclaw or nearby, please let me know!

-Linda

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My Celiac Awareness Post

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May is for Celiac Awareness.

In the UK Celiac is spelled Coeliac, same in Australia and New Zealand. In the UK they have Celiac Awareness week, rather then the full month they do in the US. Its in May, so for me, May is for Celiac.

Celiac Awareness is not really needed on a blog like mine, because to me, Celiac Awareness is about reaching those who are NOT here on this blog. Those mums endlessly walking their screaming (undiagnosed children), those dads who scratch their elbows with a knife because their (undiagnosed) DH is itching so bad. The women who have been trying for years to become pregnant. Those who struggle daily with stomach issues and put it down to IBS or stress (yeah… could be undiagnosed celiac).

Of course, not all people with stress tummy or an itch or whathave you have undiagnosed Celiac disease. But the numbers speak for themselves, in Europe something like 1 in 100 (slightly less or more in some countries) have Celiac, in The US numbers used to be 1 in 133, thats now thought to be incorrect and latest figures show similar to European figures. And how many are diagnosed? Hardly any. Estimates say that somewhere around 97% of Celiacs in the US today could be undiagnosed. In Europe they talk about numbers around 80% (varies from country to country).

So that pretty much means most of us know at least 1 undiagnosed Celiac. Maybe they have classic and visible symptoms, or maybe they are walking around with nothing other then slight anaemia or feeling a bit depressed. Thats the thing with Celiac. You can have diarrhoea or be constipated, you can gain weight or loose weight, you can have aching bones or depression. There are 300 symptoms to date associated with Celiac disease, and a sufferer can suffer only one symptom, or 50!

The people who need to know all this are not Celiacs, the people that need to know all this are people who may never have heard of Celiac!

Then the other part of Celiac awareness, the one that explains to the world that Celiac is an autoimmune disease, not a fad. Not an allergy.  The one that explains what gluten actually is. A protein, found in wheat, rye and barley and all products thereof. The one that talks about cross contamination, and explains that one breadcrumb is enough to hurt someone with Celiac disease. The one that explains that although we may not suffer anaphylaxis, there is long term damage to our systems every time we are exposed to gluten, and a Celiac who keeps being exposed to gluten can suffer other life threatening diseases such as cancer.

Eating just a little bit of gluten, is not an option. Some may not react to ‘just a little’, but the long term damage on the inside still occurs.

I am asking you all a favour today. Help us spread this awareness. Help us – the Celiac community – to spread this awareness as far as we can. Please share this post, or one of the many other Celiac awareness articles out there. If you see it on twitter or Facebook, like it, tweet it, share it. Help take the awareness further.

I also have a challenge for the bloggers out there, the non gluten free bloggers. Please, if you can find the time, write a post about Celiac for Celiac Awareness Month. YOU can reach exactly the person who needs to read it. I already gave this challenge to my small expat bloggers Europe group, and two lovely ladies accepted the challenge. I will be sharing their posts next week, along with yours if you accept 🙂

MAY! Is for celiac Awareness. May is when my own little Celiac was born. How oddly appropriate 🙂

Linda

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3 years since we were diagnosed…..

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I cant quiet believe its been three years…. I don’t remember the exact date, I remember the hospital stays, the dehydration, the coming home after, the vomiting, the diarrhoea, the wasting away, the screaming. I remember the heartache, I remember being absolutely numb. I remember not functioning for any other purpose then to hold my so obviously miserable daughter. I was at the end of my tether…. she was to young to tell me where she was. We were all suffering on a daily basis. Our life was awful. I remember the April school holiday, searching every shop in Dubai for gluten free foods, I remember learning to bake.

Its been 3 years since we got our lives back. Its been 3 years, since we were able to finally, on some level, relax.

Our life is talked about in terms of ‘before diagnosis’, and ‘after diagnosis’. Before diagnosis it was almost like we were somehow paralysed. There were days when I would walk with her for hours, and if I stopped, at any point, she would scream. So I would do circles in the mall, never stopping, just walking. I say WE were diagnosed, because Celiac disease affected all of us so very much, and still does. This is our life, as a family we are in this together, and we are a Celiac family.

Its been 3 years, since we got our lives back.

The road is still not always easy, but we do our best. Incidents of contamination are far and few between as we have all learned to avoid it best as we can. The battle now is with weak lungs and a crappy immune system that took a hard hit from a delayed diagnosis.

The battle now, is to help teach the world about Celiac disease.

Its been 3 years, and it feels like forever.

I cant remember us being a ‘normal family’ before diagnosis. Sure, we had our good days, and bad, but its only really since diagnosis that life has made sense. If someone is going to scream and cry fore a whole day, then its really better and easier for those around if they know why.

Its been 3 years, and we just keep smiling 🙂

-Linda

The question finally came….

‘Mummy, when Im a grown up, will I be able to eat gluten?’

I knew it would probably come, one day, but yet when it did I wasn’t ready. I didn’t expect to feel so sad, I didn’t expect to feel so bloody hurt, for her!

We have had many questions, and statements, and she’s so smart, so clever, she ‘gets it’. ‘Is autinka Celiac like me mummy?’, ‘When big brother was a baby he could eat gluten right?’, ‘I know big brother can eat gluten, just not at home, because we dont want gluten in our house‘. Etc etc etc. So why then did the question surprise me? And why on earth did I feel so sad…?

I don’t miss my relationship with gluten, I haven’t touched it for almost as long as she has, the last time I had it I felt awful, so its no big deal for me. But Im an adult. I got to grow up eating what I wanted. And although she is so amazingly cool with everything right now, I am in mourning for the things she wont ever get to do. She wont get to do the spontaneous pizza at midnight after the cinema, the kebab after the pub, the walking past a greggs the baker and buying a bag of donut holes and scoffing them all in one go, instead, she has to grow up and be careful, always prepared, plan everything, and although we have a great life and we are OK…. its obviously not going to be easy for her growing up, being different in your pre teens and teens is what we all strived NOT to be.

I hope by hanging out with as many Celiacs as we do that she can continue to feel that what she has is as normal as freckles or a wonky toe. I really really hope so. But deep inside I am so sad for her 😦

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Aili’s story

AiliSo Im sat here today, doing some work on the GlutenFree UAE Facebook page, and I decided to re share everyones personal stories. These stories make my heart ache every time I read them, they make me more determined then ever to keep going, to stand up, whenever I can and keep talking about Celiac disease and gluten. While there are still doctors out there now knowing the signs of Celiac disease, my job, and the job of others like me, is not over. We need to keep at it, keep talking, keep sharing, keep liking each others blog posts and keep on nagging everyone around us. Because although we may at times seem like a broken record, there are so many people out there who still need rescuing from the hell they are living in. We were rescued, we should have been rescued earlier, I cant change that, but I CAN try and change it for others.

So here it is, the story I cant rewrite ever again because it pains me to much to even read it. But this is Aili’s story, and ultimately also mine.

This is Ailis story. Aili has Celiac disease.
Aili was born in May 2009. The pregnancy was difficult requiring hospitalization for 1 month, and when she arrived in the world she was 6 weeks early.
Aili was never an easy child, obviously at first we put it all down to her being premature, then as she got older she earned the titles difficult, stubborn, hot tempered, bad sleeper etc etc. The list grew by the day.
She had endless problems with constipation, at times she would go over a week without doing a number two. Again, we put it down to her being premature and her digestive system not having matured enough, so struggled on with baby massage and sleepless nights. When it was time for weaning she point blank refused most foods. I dont think she actually ate anything properly until she was 1, and even then she ate very little.

Our older child started school when Aili was just over 1, and then the illnesses started, to many to even mention here, so we will stick to the big ones only. Victor who had never been to nursery seemed to pick up every single bug, and offcourse everything was also passed on to Aili. We had tummy bugs and colds with endless coughs, then Victor got pneumonia and was admitted to hospital for 4 days. Hugely stressful time as a parent. Less then a month after Victors pneumonia Aili got sick again, worse then usual. We tried to keep her home with daily visits to the clinic (difficult children dont do well in hospital), but she eventually got so bad we loaded the whole family to the car and went to the A&E, she seemed to get worse by the second!
We were sent to the fast track clinic from A&E where a nurse spotted Aili and promptly took us back to A&E, Aili was very very ill. She was admitted and tested positive for RSV. Her oxygen levels were so low had we kept her home longer she would have possibly suffered brain damage as a result of lack of oxygen. 3 days in to her stay her breathing was better but her heart rate was starting to go all over the place, she was on every monitor available at this point…. at one stage her heartrate dropped to 35 and noone knew what on earth was going on, We became heart patients instead of RSV patients. The RSV (which affects premature babies/children alot worse then full termers) had hit her hard and it had gone from her lungs to her heart muscle. Eventually we were sent home with follow up appointments with cardiologists as well as the usual doctors.

Her heart is fine now, we have received the all clear, but I am not sure I will ever fully recover from seeing my daughters heartrate go from normal to almost stopping.

A few months passed and Aili had stopped growing. She cried more then ever before, even in her sleep, she would not sit and play for even 2 minutes on the floor (not that she ever really did before either).

So we held her, we held her at night when she slept, we held her when she was awake, we held her when she played. Food was still a constant battle and she still did not each much. It seems we were in the doctors clinic atleast twice a week. I would phone up and before even asking for an appoinment the receptionist would ask if it was Aili’s mum calling.
We were told RSV can take children a long time to bounce back from, so we struggled on, not really looking for answers, we thought we had them!

A few more infections, more bouts of diarrhoea then back to constipation, I kept breast feeding because it was the only thing she seemed to want. Her stommach was always bloated and as she started talking more and more she would now tell us daily that her stommach hurt. I went to the doctor (again!) this time looking for answers, RSV still affecting her just didnt seem likely anymore.
We did stool samples, bloodtests, etc etc, everything came back ok. She got another bout of diarrhoea and also vomiting, she had aways vomited on and off, but together is never a good thing. We spent days in the clinic with an IV and nights at home.
After days of not getting better and no medicines seeming to help again we went to hospital and got admitted, she was dehydrated and her iron levels were found to be so low they wanted to give her a transfusion! STILL noone had answers for us….

4 days in hospital and off home we went, I made her a big bowl of pasta, and she vomited again…. I think we all knew at this point that this was not just some tummy bug, something must be very very wrong with our little girl…..

Our doctor called and told us some tests results had come back and we had to come in.  I knew which tests had been taken so I think I knew then that it was either dairy or gluten. I prayed for it to please be dairy, please please let it be dairy! It wasnt, it was gluten and our lives changed forever.

I say our lives changed, but they changed for the better. We took Aili off gluten and within days she was calmer, the crying eased off and she would sit and play with her brother for short periods. After a week or so she came to me, pointing at her stommach and said, “look mummy, owie all gone!” (That made me cry)
Her bad temper calmed down and she seemed a little bit to us like someone had given her a tranquilizer. For the first time ever I was able to stop and chat to other mums at school run, because Aili would wait patiently rather then scream her head off.  I was able to go for drives that took longer then 10 minutes, I was able to complete a supermarket shop rather then giving up half way through.
People I hardly knew were coming up to me saying our daughter seemed different! For the first time I realised just how bad things had been and how stressed I had been, slowly slowly we started to relax and be a family again. We still felt awful though that for all that time, our little girl had been in so much pain.

I am not going to go in to the long story of doctors visits or the rest of Ailis diagnosis, or even how I came to start Gluten Free – U.A.E, because this is Ailis story, not mine.

She is now a happy 2 year old, she is growing again, she no longer has stommach pains, and we are enjoying spending time with her.

Aili’s mum – Linda

EDIT 2014, Aili is now a happy 4 and a half year old, You can follow her journey on her mums (more personal) blog, Gluten Free & Me ( <– that is here!)

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Happy New Year!

1532087_608966592490592_161073765_nThank You all for your kind messages sent after my last post, I have had so much support from all corners of the world. Thank You.

Celiac kid is better, first day back in school today, the all clear has been given. I remain positive, or at least try. Because really, what options do I have? She has been better since our move, a ton better, and this was a set back yes, but you need to look on the bright side – always – or the bad stuff will consume you and make you not a very good person. So we take it all in our stride and carry on. My hero, my inspiration, my strength is Celiac kid herself. She has been through so much and never once complains. She just accepts everything, because this is normal to her. Hopefully 2014 will be a HEALTHY year. Lets hope so. Fingers crossed. If you are a person who prays, please include her in those prayers. She needs all the help she can get.

For 2014 I hope we have less then 2 hospital stays, I hope the specialist we have been put in touch with will help us find some answers to why these pneumonias keep coming, and I promise, that this is the year me and my son finally do the Celiac gene test. Its long overdue.

Whatever your wishes and hopes are for 2014, I hope they come true. Happy New Year from me and the gluten free family 🙂

-Linda

Another one of those trips….

Im not entirely sure of the point of this post, and usually my posts have a clear point, but I had to write it, because I need to somehow process this, process that this is our life, and this is how we live. Its not a nice post, it wont leave you feeling gooey or good inside, or even enlightened, it wont make you laugh. Im sorry. Feel free to not read it. 

In the last few days Ive been through what no parent should ever have to go through… ever. Whats worse is that it wasnt even the first time, or even the second, or third… the truth is, I have lost count of the number of times that I have held my limp daughters body in my arms, the amount of times Ive driven like a lunatic actually hoping the police would stop me so they can help me get to the hospital faster, the amount of times Ive entered some kind of auto pilot where I just function and do all the things I need to do but I dont feel or react to anything, because if I felt or reacted, I would have had a nervous breakdown, meltdown or a whateveryouwannacall it ages ago.

So, my daughter is Celiac. Big deal huh? Many Celiacs live somewhat easy lives (and I dont say that lightly, I know all to well what the life of a celiac involves), other celiacs, like mine has a number of health issues. Are they related to her Celiac or other factors? Nobody really knows, but what we DO know is that her immune system sucks, her lungs have damage from her many many cases of pneumonia and upper respiratory infections, and Celiacs are more prone to pneumonia, on top of that she was born 6 weeks early and her lungs were probably not as great as they should be. I still fully believe that had my daughters celiac diagnosis come sooner, we would not be facing all these issues that we are facing today, some maybe yes, but not all.

So Monday I had a call from school, she was coughing alot, so I went in, gave her some meds, she seemed fine, no temp, no big wheeze, just the cough. I asked if she wanted to stay, and she did. A few hours later, another call, she’s coughing even more. I go in, and sure, she’s coughing, but not to bad, but I take her out of class. We hang out outside, play for a bit, she runs, plays hide and seek in the bushes, ‘mummy, can you seeee meeee?’, no big deal. We wait for her brother, he finishes and we go home. On the way home I see her looking a bit more pale. The tiny worry thats been inside me that I kept brushing away as me over reacting (because Ive been here before and Im maybe just hoping Im a bit hysterical and wrong rather then right!) is now growing. We get home, she’s coughing, I give ventolin, it helps… for about 10 minutes. I call my husband to call the clinic. They have an appointment only the day after. I give the kids soup, I pace, I ask the husband to find me addresses of hospitals, just incase you know, because Id rather know where to go, just incase…… I pack a bag, why? Im not sure, I had to do something, I guess I already knew, but wanted to believe that I was being a hysterical mum. She’s getting worse, I can see her chest rising and sinking, and its going to fast, to deep, and she’s not well, I know she’s not right, but its not THAT bad…. I put her in my bed, I lie with her, hoping she just needs to rest. Im lying with her, watching her chest rise and fall, thinking in my head, we need to go, we need to go, we need to go, at the same time as Im thinking, its ok, she will be better soon, its ok. Then I hear a cough and a splutter, and shes covered in vomit and so am I and so is the bed, and thats when my autopilot kicks in, the decision has been made in my head, we need to go, and then the ‘doer’ comes out and sorts everything. Son brings towels to cover the puke on the floor (yes I obviously pulled her off the bed as soon as I could), I pull sheets off the bed and pillow cases of pillows, I sit daughter in bathtub, I call husband to tell him we are going, I take the bag and add even more gluten free food and iPads, I take phone chargers, then I somehow manage to get us all dressed and ready and the pukey sheets thrown on to the floor of the laundry room. Dogs get locked in our biggest bathroom with food and water. Im doing it all so fast, but it feels like slow motion.

By the time we are in the car and driving (probably less then 10 minutes after the vomiting) she is drifting away, not unconscious really, but not responsive either. Like so many times before its all happened so fast. The GPS sends me the wrong way, or maybe I took a wrong turn, I drive like a crazy woman, but yet Im calm, extremely calm, like ice. We finally find the hospital, but the area is a mess and no parking that I can find, its dark, all the signs are in Polish and I just want to get in. So we park in a car park, not close enough, and my big brave 7 year old who must be absolutely terrified, helps me with all the bags, and I carry my daughter and we run. We run, and we get there, and I get to the front desk, and I ask the lady those familiar words, ‘do you speak English’ and thank heavens she says yes and I sit, and I open my girls coat and I point, and I say, ‘her breathing, please, she cant breathe, she has a history of low oxygen levels’.

This is a kids hospital A&E just after normal clinic hours, they are super busy, but we are whisked in to a room within seconds of our arrival and 2 Dr’s see to us almost immediately, a nurse helps translate and then husband on phone also. None of this matters, we are there, we are safe.

I don’t need to continue the story, this was 5 days ago. We were admitted of course. Daughters oxygen levels were around 87 when we arrived. We have been in an ambulance with levels higher then that. I know for a fact they were not that low when we got in the car, once things get bad they get bad fast. We have been let out now, not because she is well enough to be out, but because there is no place worse for someone with a crappy immune system then a hospital, the hospital is also not really able to provide 100% gluten contamination free food, so home is better. We had to beg and plead, but yes, she is home, with twice daily visits for IV meds. She is still very sick. Pneumonia. Her blood tests were repeated many times already, and it seems the day we came in is pretty much when the infection started, because the level of infection was low, so we caught it fast, caught it early they say. But how is that possible when she went from playing hide and seek in the bushes to being pretty much out of it in about 3-4 hours?

Celiac disease absolutely sucks. Pneumonia also absolutely sucks.

-Linda

Celiac runs in families…..

I need to talk about Celiac disease today. Maybe its the lack of glutenfree UAE meetings or the lack of interviews this last month, but I really need to tell people about this.

Why? Because I DIDNT KNOW. And IF I had known, our life today, could have been so very very different.

Celiac disease is genetic. You either have the gene or you don’t. Now, here is the tricky part, you can have the gene, and never ever develop celiac, because when you are born, the gene is not active, its just THERE. Then, at some point in your life, it may (or may not) ‘trigger’ (become active). For some people this happens after a major illness, surgery, a period of immense stress, for many women it can be triggered in pregnancy or childbirth. Some remember getting ill after losing a significant other. It really can be anything. Celiac has so many variations, one glove never fits all.

So, once Celiac is triggered and the person gets ill and hopefully diagnosed, then what? Then you need to test all the relatives, in some countries all first degree relatives are tested as routine, in others they only test those who may have symptoms. I personally think you should just test everyone, because while one celiac may have 20 symptoms, another may only have 1.

If a relative tests positive, then obviously that person will need to go on to have the biopsy and have Celiac confirmed. But if you test negative…. that is NOT the end. Please remember, the gene can trigger at any time. So regular screening is necessary. Some like to test yearly, others test if they feel unwell, others do a genetic test to see if they carry the gene (if you don’t have the gene, then no further screening would be needed), others still just go on a gluten free diet to prevent getting to sick in the event that the gene triggers.

Very often when someone gets diagnosed, testing on family members starts and it turns out Celiac has been in the family for forever with grandparents, aunties and cousins also being diagnosed. Some relatives may point blank refuse to be tested. ‘Ive been fine all these years….’.

Ask your Dr for a leaflet or a family appointment so that everyone can hear it from the medical professionals themselves.

If you are an undiagnosed relative of someone with Celiac, its important to mention this if you are ever under medical care. You may be in hospital with pneumonia and think that its not important because you were tested 6 months ago. but it IS important, always tell the Dr.

Celiac disease doesn’t have to be a big deal, the earlier its caught, the sooner you start the diet, the better. The longer it goes un noticed, the more damage it will have time to make. Some reversible, some not.

Are you Celiac? Share this information with your relatives. Often.

And remember, a blood test for Celiac will be negative for anyone already on a gluten free diet or anyone with an igA deficiency. Not all doctors know this! Find one that does.

-Linda

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