Tag Archives: diagnosis

An unwilling homeschooler

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Yup. Not only am I one of those mums *insert eyeroll*, I am now also about to be one of THOSE mums *insert even bigger eyeroll*.

We are back from the lung hospital. We have the results from the immunologists. And guess what, there is nothing wrong with with our kid! (Apart from recurring pneumonias with low oxygen levels).

PCD, CF, back normal, no growths or foreign objects in the lung. No asthma although she may be heading that way. A couple of new allergies diagnosed. All immune levels are ok, some a bit low, but within the accepted range, some signs of autoimmune activity that needs to be followed up but thats it.

The doctors agree that its not normal to get so many severe pneumonias, and they agree the low oxygen levels that go along with it are also not normal, all our specialists were so sure they would find something, either in the lung or with her immune system, and I know I shouldn’t be disappointed, because obviously its great news that she’s ok and its not one of the big things, but I cant help but think that this isn’t over at all….

Oh, and there is a plan. Her pulmonologist and immunologist agree that she needs “time off”. A year off school I asked, and the reply was; “probably more like 2”.

I should be happy about this as well as my gut instinct has been telling me for a good year or two now to take her out of school so she can rest, but again, I feel cheated somehow, I wanted a better answer, an answer where we could actually DO something.

I know, it makes sense to have her rest and not be near other kids for a couple of years, if one pneumonia takes 6-12 months to get over she really does have her work cut out for her. But a diagnosis of ‘lots of bad luck and vicious circle and immune system that needs to mature etc’ just doesn’t sound very much like a real diagnosis to me.

One of her antibodies to pneumonia was a little low, but not so much, her overall igg is a bit on the low side but acceptable, the igg1 a bit on the low side but acceptable. FUCK acceptable. Acceptable doesn’t get us anywhere. What if we wait two years and then after that there is no change?

Now back on to the steroids also, yeah, the ones that make her not grow and suffer from bone pain. The ones that make her cry walking down the stairs, the ones that when she came off them she rapidly grew 3 cm!

Im so so tired.

On the bright side we have had doctors confirm she shouldn’t be in school and the paper work to support it. On the not so bright side I need to come up with a home schooling plan in a country where you are only allowed to home school in extreme cases and if so then it must be in Polish.

Anyway. Bla bla. Still sort of processing all this, and Im feeling positive, ish, but also not so much.

Deep breaths and all that.

-Linda

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

Things make so much sense in hindsight!

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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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Before we were diagnosed……

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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

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