Tag Archives: Celiac

Celiac, Dubai, School and another Pneumonia!

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Image Boy do I owe you all an update, its been a month! Admit it, you couldn’t sleep at night for missing me? 😉 Right, so we went to Dubai, had an awesome awesome holiday. Got a sunburn, went to Wild Wadi, splashed around on the beach. Celiac kid had a wheeze by day 3, so once again it just reconfirms how right our decision was! Being in Dubai was so ‘normal’, felt like we never left, so comfortable being around those people we have known for so many years. I miss having friends like that here. It will come, Im sure. Anyway, back to Wroclaw, picked up our puppy and then Big kid started school. 1 week in he says he loves it JUST AS MUCH AS HIS SCHOOL IN DUBAI!!! Woop Woop! RESULT! After the horrid experience in the last school he deserves the best school we can possibly give him. I need to know that my kids are happy and loved whilst in school. Fingers crossed and touch wood this school keeps on delivering 🙂 Celiac kid had her birthday! She’s 5, FIVE! How the hell did this happen? My baby is a big girl? Then yeah… the crappy news. Celiac kid coughed a few days ago, just one cough, but I looked at her and I just knew what was around the corner…. the day after I ended up taking her to our landlord’s clinic (our landlord is a gastro and knows Celiac well, what luck!?), he helped me find a good Dr who speaks English and works with kids. I must say, so far the Dr is wonderful. The same afternoon we saw her, and although Celiac kid just had a slight cough and no fever (yet) the Dr listened to me and believed me. Examination confirmed a bad right lung, and by evening her fever was reaching close to 40. Thank God we acted so fast. Saw the Dr again yesterday and the entire right lung is very bad, but luckily her left lung is clear and because of this her oxygen levels have managed to stay high enough for her not to be admitted. Obviously any other kid would be admitted, but again, the Dr has listened to me and agrees Celiac Kid is better of at home. We have remained in phone contact by texting every few hours. Best part though, this Dr is already sitting at home doing Celiac research and learning more then she knows now, and is finding us a string of expert so we can investigate every avenue there is and make some kind of plan. Its not fair to keep having these pneumonias. I am no longer able to tell you how many she had…. awful. Anyway, once she is better there will be testing for other allergies, lung scans etc, Im actually at this point thinking finding something may not be so bad, because at least then you can try to treat it! Im glad I decided to not let her start school til September, this time was meant to be spent growing and getting stronger, not having pneumonia number 6 or 7, but hey ho. Im feeling positive despite all. How can I not? A great landlord, a great house, a great and understanding Dr, ok oxygen levels, a puppy!  We choose our reactions to some extent, and I am truly grateful for what we have and that I haven’t lost the plot. Every time the sh**t hits the fan and Im able to stay with my feet firmly on the ground is a victory in it self. I have blog posts waiting to be written, Celiac Awareness one with some great links from lovely blogging friends, and also an Airplane food one. Soon, One day InshAllah! -Linda

Night time ramblings

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Im sitting here, its late, and Im feeling happy and emotional at the same time.

Today was a really perfect day, I played frisbee with the kids in the garden, I did laundry while the kids played, we went to the pet shop for dog food, came back and took the dogs for a long walk. Celiac kid and big brother were running. It was nice. We came back, had dinner.

Normal day, nothing special right..? Only for me, the fact that we get to have these normal days is so very special. I think, for the first time in a very very long time I am more relaxed. I am trusting those lungs of hers to do ok, and I am breathing easier knowing that she is.

So my normal day… I am so grateful, so grateful for every single day like that we have.

There is a light , I can see the light, and maybe, just maybe, this crazy move we made will pay off, maybe we found our answer, please let it be so.

Its weird how the minute you decide to do something unconventional, like living apart from your husband, every Tom, Dick and Harry comes out of the woodwork and starts talking about how marriages will fail if you live apart, cheating spouses and failures, people who never once had an opinion about your marriage previously are all announcing pending doom. Whatever I say. Whatever. Really. None of them have a clue.

Living here, living apart is actually saving us, saving us all, because finally, we get to have these normal days. I get to play frisbee with my kids, and hang laundry and cook while they play and not worry that maybe now the wheezing has started and maybe now the cough will come and the issues that follow.

This is where we are not your average celiac family, because most do not have these issues that we have, if you are newly diagnosed I need you to know that if you read this, this is not the ‘norm’.

All we can hope now is that good gets better and better gets strong, and maybe celiac kiddo can outgrow some of these lung issues. Its really not fair that such a small little thing has to battle so many pneumonias. But if it happens, its ok, we live now, we take each day as it comes, try to stay relaxed, don’t make to many plans because cancelled plans are awful.

Today was a day that most people take for granted, and yet for us, it was one of the first completely normal awesome Sundays.

My son, my awesome trooper, my diamond, gave me a hug this afternoon and said ‘ thank you mummy for the bestest day’.

-Linda

3 years since we were diagnosed…..

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three-years-old-miml

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….

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‘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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Gluten free food in Europe is not always gluten free…..

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We learned to be gluten free in Dubai, we learned to be gluten free in a place where there was no bread available to buy in the shops (at that time), hardly any biscuits or crackers or cereals available at all, and what WAS available (back then) was gluten free, gluten free as in as close to 0 gluten as you can get, in european terms, ‘naturally gluten free’. The sucky thing is, many countries now produce gluten free foods using wheat starch. Yeah, I know, makes zero sense. Wheat = gluten, so why the hell are you putting it in my gluten free food? I don’t care how hydrolysed and processed it is, to me its still gluten, and you know what, it IS! Its STILL gluten, just happens to be below 20 ppm. But think about it… if its 15 ppm, and you eat it every day, and then eat crackers and bread and pasta and a few other things then holy CRAP are you really eating gluten free at all?

In our case the choice is made easy, because our celiac kiddo reacts to wheat starch, she reacts to traces, she reacts to things that are not as close to 0 gluten as you can get, and why shouldn’t she? She has CELIAC!? All those people who eat the pretend gluten free foods and feel great, I wonder how they would feel if they ate only 0 gluten free food….?

Anyway, back to why they put this gluten free wheat starch in food. Heres the deal. Gluten means GLUE in latin, and thats how it works, when you bake or cook with gluten, gluten is what binds things together, the glue that makes your bread not fall apart (like a gluten free bread might..). Wheat, is CHEAP. So for manufacturers it makes sense to use GLUTEN in our gluten free foods, because the alternatives are far more expensive. But who is paying the price… really? Will research in a few years come far enough to ban wheat starch in gluten free foods? I hope so!

Please note, there is wheat starch and there is gluten free wheat starch, so if you are a celiac wheat starch eater, make sure you ONLY eat the one that is labelled as gluten free, its not 0 gluten, but it is at least below 20ppm. 

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Aili’s story

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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!)

Aili

Did you lose friends over Celiac?

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I think if you didn’t, you might be one of the lucky ones. Don’t we all have them… the people who don’t take Celiac seriously, who get slightly embarrassed when we start questioning a waiter or a manager, the not so discreet eye rolling when we start wiping crumbs from a table in Starbucks or tell our Celiac kid not to touch anything. Then they blame us, because WE changed. Well of course we bloody changed! We had to! And Celiac is hard enough without us needing people in our lives making it harder! It doesnt bother me to wipe tables in cafes, so why should it bother anyone else?

Haven’t we all heard it all?

‘A little bit of Gluten wont hurt’

‘You need to expose her so she can get used to it and grow stronger’

‘I know a family where a kid was allergic to bla bla bla and they started….’ (SHUT UUUUUUUP!!!!)

‘Oh comon, of course there wont be gluten in -insert ice-cream, dried fruits, chewing gum, crisps etc here – ‘

Why is it that people who hardly know what gluten is all of a sudden consider themselves total experts?

But then there is the good side, the best bit about Celiac! The instant friendships with other families like yours, the Celiac buddies. The ones you can call from the supermarket aisle and they do as much researching as you and can tell you in 2 seconds which salad dressings are safe. The people you can 100% relax with. Wipe tables, hands, ask the strangest questions around, and then offer them your baby wipes so they can do the same.

The truth is, for us, we gained far more friends then we lost. Sure, we lost some, but again, we don’t need people in our lives who try to ridicule or belittle our situation. So if you lost friends over Celiac, then get out there, go to your local Celiac meet up and meet others like you. For me, this is the very reason I started Gluten Free UAE, I wanted my child to not feel so different. And by having a huge network of Celiacs around us, being gluten free is as normal to my kids as it is to wear glasses. Some people eat gluten, some don’t. But I will NOT have people in our lives eye rolling near my daughter when we are doing things we have to do to keep her safe. I don’t make a big deal about Celiac, neither should they.

-Linda

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Friendly Food Poznan, my first visit to a gluten free restaurant!

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Yesterday I did something I haven’t done in 2 years and 8 months (give or take), I went to a restaurant and didn’t use even ONE wet wipe! We went to a gluten free restaurant! And its really gluten free. It doesn’t just have a great gluten free menu, it has a gluten free premises! No gluten allowed what so ever, everything is certified gluten free! The owner and the staff all know their stuff. I assume they are Celiacs themselves, but due to a language barrier I am not 100% sure.

Before becoming gluten free we used to have lunch out every weekend, even when Celiac kid was undiagnosed and difficult, we still made the effort to eat lunch out, taking turns to hold and comfort our screamer. Then there was a period of us attempting to continue this (after diagnosis), we would bring Celiac kids food , wipe down the table etc, but it always felt a bit like Russian roulette, not something you want to play with your kid! So the restaurant visits became fewer and fewer. It just didn’t seem so important anymore. Sure, there are a few places that we trust that we go to, likewise, if we travel we do eat out if when we feel like it, we don’t let celiac rule our lives, BUT, given the choice, we would rather eat at home where we know everything is safe.

We went a bit crazy I must admit. I mean, a whole menu where everyone can eat everything??!! Its like letting kids in to a sweet shop and saying, ‘hey, you can have whatever you want!’.

We had crepes with spinach and feta filling, crepes with turkey mince and tomato filling, crepes with chocolate and pizza and hot dogs, and some grainy thing that was some kind of kasha (looked a lot like quinoa) and it tasted so amazing I cant wait to go back and have it again. We had chicken with veggies and roasted veggies. Everything tasted awesome. The best part was actually not the food though, it was being able to sit together, with everyone being able to touch each other without using hand wipes AT ALL, and all of us being able to try everything from every plate and not having to worry. It actually brought tears to my eyes. So normal for most, but something we so rarely (never) get to do.

They have a shop too, they sell spices, tons of them, I was overwhelmed! Then there are pizzas and breads and grains and flours and biscuits and so much stuff!! Again I must apologise for my photos, iPhone again, I really need to bring my camera out with me.

Im not a food reviewer, but if you are a gluten free person and you ever find yourself in Poznan, you MUST visit Friendly Food.

Friendly Food Website

rezerwacja@friendlyfood.pl
tel. 665 450 858

-Linda

(if you like this post then please also take a minute to like us on Facebook! www.facebook.com/glutenfreeandme Thanks 🙂  )

Another one of those trips….

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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…..

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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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