When Celiac gives you presents…..

I talked before about how we are not one of those Celiacs that just get to go gluten free and be done with it. Noooo, in our daughters case (and possibly mine but never mind that lol) Celiac has come with some extra special gifts.

Aili has had bone pain on and off for many years. After her Celiac diagnosis we thought “oooh, thats why she didn’t want to walk / put her feet down, she must have had bone pain”, then the years went by, and the bone pain, it never really went away. From time to time its been really bad, with tears when she has to use a staircase, at times so bad she doesn’t want to walk and we use a pushchair still even though she is 7. We often put it down to her Celiac, I heard myself say many times to people that “she probably has weak bones from not being diagnosed quick enough”. I even explained to people about how when you have no villi your body cant take up any nutrients and your body will suffer.

Villi are the small tiny “hair” like things in your small intestine responsible for “soaking up” all the nutrients in your food. In a Celiac who is eating gluten, these tiny “hairs”get destroyed resulting in a smooth small intestine that is incapable of taking up any nutrients, resulting in varying degrees of malnourishment. 

Most celiac’s of course go gluten free, the villi heals, and over time they feel better. In Aili’s case feeling better hasn’t really happened. Yes, she is growing, no, she has no gluten exposure, but she still has many symptoms from many different things, some still unexplained.

We thought for a long time that her bone pain continuing was growing pain or her silly low vitamin D causing issues, then once the EDS diagnosis came we put it down to that.

I thought a few times about a bone density scan, and it was mentioned to me as well but it was never done, until this summer. When they told me we were doing it I was super happy, because its good to know stuff, not suspect or think.

So yes, bone density done, and yes, it is low. Very low. Far far far to low for a 7 year old. And bingo, a new diagnosis. Osteopenia. Osteopenia is not as bad as Osteoporosis, but its bad enough. Osteoporosis is also known as “brittle bone disease” and Osteopenia is the stage just before that. The bones are weak but not brittle.

We are lucky though, even though our GP had told me to take her off the vitamin D as her levels now are acceptable (they had just crept above 40), I continued them at a high dose. I know Aili better then most and I know what happens to her vitamin D levels when she is not in the sun daily or doesn’t take supplements.

Not saying anyone should go against dr’s advice here, but sometimes you have so many dr’s telling you different things you just have to make some decisions on your own.

I told our rheumatologist I had continued the D  and she actually smiled and gave me a high five, she said things could have been much worse without and to keep giving the D at exactly the dose I am. Now Aili is on other meds as well to help her, but unfortunately the steroids she must take for her lungs counteract with those meds, so all we can do is hope for the best. We were letting her rest a lot because of the Ehler Danlos and the fatigue that comes with it, but now with the Osteopenia we need to push her instead, more walking, not less. Her bones need it to get stronger.

Our lung dr. who has been reading up about Ehler Danlos and osteopenia says that Ailis case is so rare we may not ever fully know what symptoms are linked to which disease, we can learn about some of the diseases separately, but we may never know exactly to the full extent of what is going on with her. We suspect she may have MCAD as well, but nobody in Poland at this point can diagnose that. Her lung disease has never been seen before in a child, or a female. There is nowhere to read about a case like ours – because we are the first.

How much of what we have going on is Celiac related? I dont know. The Osteopenia for sure is, the malnourishment seen in (undiagnosed) Celiac is a direct cause of her osteopenia. Many with Ehler Danlos seem to be Celiac as well, but I can not find any research directly linking the two. The lung disease is un related to Celiac , but may be linked to the Ehler danlos. See….? This is why my hair is rapidly turning grey 😉

At this point I am less interested in having a full diagnosis and more interested in trying to make Aili’s life as normal and as enjoyable as possible. We have had to many hospital stays this year already and whats the point really in going if nothing is changing by us going? Maybe at this point we need to concentrate on the big stuff (lungs) and just try to enjoy ourselves more? To heck with limitations and musts. We do what we can and what is possible.

 

Follow mine and Aili’s journey on my facebook page

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image credit: Donna Roberts

 

 

My top 6 #Back2School items for an allergy kid!

So, Im one of those mums remember? (Eye roll as you see fit). As one of those mums back to school is a little bit harder, and a little bit more stressful. Whether you are new to the allergy / celiac game or an old timer, my list of must haves may help make your life a teeny bit easier. Aili was diagnosed as a baby, not yet 2 years old, now she is over 7, and making sure I have these allergy must haves around is totally routine.

  1. Gluten Free labels! I stick these on all our lunch box containers, these serve as a great reminder for any teacher or other adult approaching my child and hopefully reminds them to not touch my carefully prepared allergy safe meal. These are from Ladybug Labels and they ship internationally. The labels are dishwasher safe and stay on for a long time. Through the years I tried many different brands and these win hands down. The quality is superb and they are easy to peel off and stick. (http://www.ladybuglabels.com)
  2. Name labels. The last thing I need is for my kids to lose anything (they do, anyway obviously, especially my son, lol), but even worse would be their stuff getting mixed up with someone elses. All their lunch gear including cutlery has a name label. Again I tried many different ones from different companies and these are now my go to every year. Delivery is fast and cheap even for international delivery. I always get the plain label, it sticks well, peels off easily and is dishwasher safe. I still have some labels from when my son was 4 that are stuck on! He’s almost 10 now, thats value for money right there! These are from Easy2name and come in lots of different colours. (https://www.easy2name.com)
  3. Good lunch boxes! My kids bring lunch to school every day and I need something that lasts, is good value for money, and works! It needs to be able to keep my kids food hot or cold, and I need to be able to clean it easily as it goes in to a contaminated environment on a daily basis. We now use only Pottery Barn lunch boxes. The kids get to pick a new one every second September, so we have a few, the first ones we ever got are still alive and kicking (!). We use lunch boxes for every day outings as well, so even though the Pottery barn boxes aren’t exactly cheap, the fact that they are practically indestructible makes them value for money. I pop them in the washing machine regularly to clean them and so far, no problems! Pottery Barn also delivers internationally! (http://www.potterybarnkids.com)
  4. Good Thermoses! My son goes through anti cold food phases, especially in winter. Ive tried so many thermoses its unreal, many of the kids ones are actually good, but to small for my growing boy! I also found many are hard to open once the hot food is in and I prefer my kids to be able to open their own containers. Surprisingly, the best food thermoses I have found are the IKEA ones (or maybe not so surprising, it is SWEDISH after all, haha). They are a great size, easy to open, no flimsy silly seals that come off after 5 uses, and best of all, I can wash them in the dishwasher (they do say not to, but I do and so far no problems). As far as affordability goes they are amazing. The food stays nice and hot too which is obviously great as so many thermoses don’t keep their heat well. (http://www.ikea.com)

     

  5. Baby Wipes and hand wipes. Seriously, you cant get enough of these babies! I keep them in every school bag, in every handbag and each kid has some in school. The baby wipes are sometimes on special and you can get a box with it, cover the box in funky stickers and make it non babyish for school. Alco gel is of no use as it does not kill gluten or other allergens, allergens need to be washed / wiped off! You can get wipes in pretty much any shop. Not all wipes are gluten safe! Johnsons contain no gluten.
  6. A good freezer block. Again, I tried so many. Having had my kids in school in Dubai I may have gotten overly paranoid about the whole cooling issue, but unless you are sending a hot lunch you really do need to worry. These allergy / celiac kids are often more sensitive then others, and the last thing we want is to give our kids food poisoning. I have every size and shape imaginable, these ones are firm favourites as they are slimmer then others, come in pretty colours and stay frozen until lunch time even though they are slimmer. I got these particular ones in Jula. (Yup, another Swedish shop!) (http://www.jula.com)

Anyone want to add anything? Is there something you cant live without for sending your allergic or celiac kid to school? Id love to know 🙂

If you like this list, join me on Facebook!

 

Its May again

May is important in my house as its Celiac awareness month. This is the first May that we know for sure all 4 of us have it. May is also Ehler Danlos awareness month, and Lupus awareness. How awesome is that? (Or actually not so awesome as it happens). As you know my daughter has EDS and is under investigation for Lupus. May is also when her birthday is!

I will do my proper Celiac awareness post later in the month, but for now, please, if you do follow my blog, pop to my facebook page and share some of the celiac awareness posts Im sharing in May. There will be a new one daily, all tagged #celiacawareness #nochoice #pleaseshare . Maybe we can reach another family like mine, a family that suffered greatly and had never even heard of celiac disease. Maybe we can help prevent some suffering somewhere. So head over, like or share or comment. And Thank You!

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Tesco Poland – Thank you!

Remember some time back when I wrote about Tesco Poland and how absolutely awful it was in terms of free from? I sent that blog post to every Tesco head office address I could find, tweeted it repeatedly and emailed SO many people. Then… a few months back things started happening in Tesco. A free from shelf appeared, then two shelves, then three…. the bio section grew as well. I kept saying to hubby, I HOPE they bring their free from range over, its SUPERB… then I started seeing the Free From lactose free stuff (this from a shop that didn’t even have basic lactose free milk before). The Free from cottage cheese arrived a few weeks later, and I was like “YES!!! They are SERIOUS”. We now have a gluten free section that would put most other shops to shame, bigger then Auchan and carrefour for sure… and today…. oh wow… today, there was a free from sign on the freezer, and there was ICE CREAM! And there was jumping up and down a little and squeals of happiness and YESSS!!!!!!

Now all we need is the pies, the ready meals, the lasagnes, the cottage pies the everything!

And one of the leading sandwich meat factories went gluten free a couple of months back, and another looks like its following suit! POLAND, you are shaping up nicely for people like us! Im so happy. Really. Its only food… and yet its the normality of walking in to a shop and being able to buy something that others take for granted.

Tesco Polska, dziekuje bardzo!

Inne wiadomości na temat życie bez glutenu w Polsce, nie zapomnij śledzić nas na Facebooku.

5 years gluten free!

We have been gluten free for 5 years this week. 5 whole years! I remember it like it was yesterday. We were called in to the clinic, it was a Saturday morning, they had some results they said. Aili had been in and out of hospital, I was drained, mentally and physically. My life revolved around my screaming baby and lots of vomit.

We went in, the clinic was busy, lots of screaming kids, everyone was rushed. All the staff knew me by then, by voice, by name, by daughters name. We were ushered in to see the dr between two others who had appointments, it was rushed, no examination, papers handed over. I had been hoping it was lactose, but it wasn’t, it was gluten and my whole world was spinning.

We walked out, papers in hand. Gluten cant be in to many things right..? My son was hungry, my baby girl was hungry, we were in a mall and the mall was spinning. I let out a small sob. My drained self couldn’t cope. That small sob was it. My husband rolled his eyes and told me not to cry again, our life was a mess.

I never cried about gluten again. I cried many times since obviously, but not about gluten in particular.

We went to mc Donald’s. Son had a burger, Aili had some fries. No gluten in fries right…? We went home. We went home and nothing was the same again…..

It was good different though, not bad different, because the vomiting….? It stopped that day. Our girls life was saved that day. It continued to be saved every day since.

I look back at that day now, and I feel sorry for the exhausted mum that I was, and I wish I could have given that mum a hug and told her it will all be ok, that its only hard at first, and that life will get better now. I wish I could hold that mum and tell her to cry it all out, get it over and done with – the crying. I wish I could go back and smile at that mum and encourage her, because back then, going gluten free seemed like such a huge huge task, keeping my baby girl safe seemed so impossible.

I was so tired from months of illness and hospital and clinic visits that any task – no matter how small- would have seemed impossible that day.

We did it, of course. I did back then what I still to this day do with all the new stuff. I learned everything I needed to learn, I got on with it, I looked forwards and upwards and onwards and I remained as positive as I possibly could, and I have, almost every day since. Even in my darkest deepest moments of despair, I am still a very glass half full kind of girl.

Gluten now, 5 years later seems like such a minor thing compared to all the things we are facing today. Sure, its hard still, but its second nature, I have done it for so long it no longer bothers me. 

If you are that mum that I was that day, today, tomorrow, yesterday… please know this. It gets easier. Really. It really really does.

Happy 5 years to us!

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Dont forget to join me and my family on Facebook! 🙂

 

Sometimes I just want to scream- an update on our diseases.

I am trying to process all this new information, come to terms with it, understand it…. but its hard to come to terms with things that are maybes, things that aren’t for sure.

With the Celiac process I also felt sorrow, and guilt (because mummy didn’t know) and then I read and read and read and learned whatever I could, made a support group because there wasn’t one, met others and I processed. I not only processed but I excelled in my knowledge, helped others (and still do) and it was all ok. Celiac was ok, our disease was not a lonely thing. We were “severe” symptom wise and issues wise, not those happy go merry celiacs that go out and function somewhat normally. We had issues, many of them. Now ofcourse I know most of those issues were probably not celiac at all but all the other crap that we now know about.

Trying to process a disease that I have to google every time I need to write it because I cant learn to spell it (hypereosinophilic syndrome) , trying to process a disease that she probably has but they dont want to say for sure yet because there is no damage, (lupus and rheumatoid arthritis), trying to process and understand a disease that is super rare and the only specialist that deals with it in the country we live has closed down his email and no doctors know how to get us the help we need (Ehler Danlos Syndrome). What else…? Haha, I mean, we for real have to think twice to make sure we include everything when we are told to give a medical history. The allergies and the celiac take a backseat will you, you are so minor I mostly forget! I even find that offensive myself as a celiac advocate, but it is how it is right now.

Then there is her immune system, a system that we know its faulty, but they cant figure out what part. She gets sick and her system doesn’t respond, she doesn’t fight. Her levels are ok on paper, but in reality…. not so much. They are testing and re testing, the road has already been so long, and yet there is an awfully long way to go before we actually get to someone saying a. yes, this is whats wrong with her immune system, or b. There is nothing wrong with her immune system and whats happening is a symptom of her other disease(s) that are not yet fully diagnosed. 

Meanwhile we are at home a lot. We rest. We eat. We try to live a normal life. What is normal anyway? This is normal to us, pretty much has been for years, naming the crap really doesn’t make much difference in how we live, although I must say I do feel better.

When baby girl says she has a bad day now and she’s tired, I let her stay in bed all day. A year ago I would have felt guilt, guilt that she isn’t playing outside, guilt that we never DO anything, guilt that she didn’t get enough fresh air etc etc etc. All that guilt by the way, it wasn’t my guilt, it was the guilt that society puts on you when you have a child that doesn’t look sick. If they don’t look sick they cant be, and so they must conform to a life where you do stuff every day, go out every day, dont use a puschair when you are 6 etc etc etc. Now the only guilt I have is that I pushed her when obviously on those bad days she needed to rest.

Oh, and I have guilt about her hair! Gosh, this hair that we grew and grew, and she would cry when we brushed and I thought she was just being a kid. She asked to cut it, and I didn’t say no, but I talked her in to keeping on with growing it long, every time. Now after reading and reading I realise that most EDS patients have “hair pain”, many cant stand to have their hair brushed as there is so much pain involved. Who the hell am I to try to talk her in to having it long?? I listen now. I have learned to listen with ears that aren’t tainted by our societies pre set expectations of what life should be like. I listen like a true listening expert and whats more, I hear her.

I will keep processing, I will keep on hanging in there. Check in on us on facebook (which is far easier to update then here).

Love and spoons

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We are feeling positive…

Its been a while. The last two months have been INSANE. The 2 hospital stays in 3 weeks took its toll, on me mainly I guess. There was the tightness in the shoulders, the daily headaches, the waking up at 2 am and 3 am and 5 am to google medical terms (!!), the comfort eating, the not being able to face the laundry pile or managing to do anything other then feed us and keep us somewhat clean. We have worn pyjamas, ALOT!

Stress is a killer. But in a weird way, its all ok, Ive “hit the wall’ before. Ive crashed mentally on some level after most our major hospital stays. Sometimes I just need 4 days of calm and its all ok again, other times its taken 2-3 weeks. One of the biggest ones was 3-4 years ago when after 3 months I still couldn’t “get it together” and had to seek medical help. I write this, not for attention or for you to feel sorry for me, but because I know there are other mums like me out there, and its ok! Feeling the stress, not sleeping, not being able to hang the laundry or clean the house, its all normal. We do what we have to do, we get our rest and sooner or later we will recover, and sometimes you need the help of some clever doctors to get you back on your feet too. And thats all ok! 

Im back on my feet. A few days only perhaps, but Im there. I watched 2 whole episodes of a tv show and understood what I  was watching (!!)  I did 2 loads of laundry in a day and hung them. The house is decorated for Christmas, there is dinner for today and tomorrow already made, the freezer is stocked with bone broths and bolognese for “bad days”.

Im not super mum, but I’m doing my best. Im doing ok. We are supported. We are ok.

In January I need to pick up all the strings left hanging, arrange appointments and follow ups. Im in no rush. Nothing will change because we wait another month. Its Christmas time, and we will concentrate on eating and breathing and being alive. (Not that I really need much more of the eating, LOL!)

While I haven’t posted much on the blog lately, I do update the Facebook page pretty much daily 🙂 Come join us!

 

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