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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Those darn celiac genes….

Yeah, I need to go on about those darn genes again. Im over it, I dont care, but maybe you guys do and you deserve to know.

Hubby has the gene too. Although it was expected, it just seemed far fetched….. well. He has it, which I guess now makes his DH diagnosis 100%. He has one of the genes only, but if I understand the result correctly he has both sides of it so would have gotten it from both his mum and his dad. Our poor kids really didn’t stand a chance eh?

Well, Ive said it before and I will say it again. Everything happens for a reason, this was obviously meant to be.

Now we are a family of 4 that are gluten free, no longer because we chose it, but because we have to be. All of us. Sons last profile was negative, but he only did 11 days of gluten. Those 11 days his rash came back and his tummy was bad and he didnt want to eat any more of it…. not putting him through 6 weeks of it, partly because its cruel, and partly because we cant as it will expose his very sensitive sister. So thats it, he will now be 100% gf out of the house also.

Shall I rename the blog now? GF & US? 😛

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Welcome to the family celiac genes, we are not pleased to have you!!

I have been quiet lately. I have my reasons. Those of you following the Facebook page will know why….

I have been UBER busy coming to terms with the reality of celiac genetics. The reality is, that me and my son, both have the genes. Yes, genes! We both have BOTH the celiac genes. Congratulations to us.

Its funny how after 4 years of joking with my celiac buddies that I am probably a “closet celiac’, and 2 of my favourite doctors agreeing its safe to assume I am celiac too, now that I have this paper, I am in TOTAL denial. And I mean total. I haven’t eaten gluten for over 4 years, but now that I have this result, all I want to do is run out and eat gluten…!

After over 4 years of being pretty sure that I have the gene (and not doing the test because I wasn’t emotionally ready – read chicken) I am now in total shock and denial. I keep re checking the paper to see if its really true, if I really have the bloody gene, I read it and re read it, and I keep laughing (rather hysterically mind) because this is us, and of course I have the gene!

(Did you watch Friends? The episode where Chandler and Monica are in bed and they are talking about who the father of the baby they are about to adopt may be, and Chandler says, this is us, ofcourse its the ax murderer. Well thats a bit like me and my family, and a constant joke between me and hubby.)

I keep saying to myself that fine, its just a gene, and obviously I don’t have celiac. Obviously right??? Never mind the bone pain, the migraines, the fact that until I cut gluten I was the skinniest girl in the world and that Ive had stomach issues pretty much my entire life…… All of a sudden in my head all this… – not gluten related at all! (Im in denial, didn’t I tell you?)

Never mind the fact that we just spent 11 days in Greece and that I ate gluten free but not contamination free and a week after getting back my tummy is still in absolute bits and I can hardly move its hurting so bad. Stress you know…. (told you I was in denial).

For my son, we stuffed him with as much gluten as we possibly could during holiday and did another celiac profile. His profile that was done at the same time as the genetic test was negative…. Im not sure why… the previous was inconclusive. I know he has a rash that is gluten connected and he himself says he feels confused and forgetful at times (when eating gluten) – could it be he is describing brain fog?

Clever 8 year old that he is though we have talked to him about the options, and he wants a positive test before cutting gluten, just so he can know for sure and be careful. I hope the next profile is positive so we can just be done with it, if not I will speak to our celiac professor and see if they can do a biopsy on him. If he had no symptoms I would just keep doing the profiles I guess, but there are symptoms, mild, but still symptoms. Some may argue we should just cut it and be done with it, but without a diagnosis I fear he will not be strict and continue to eat gluten at parties and play dates. This is not an option if he has celiac, so I do feel in his case its important to pursue a complete diagnosis. He agrees, and not because I talked him in to it. we listed his options and he picked “knowing for sure” and having a biopsy if needed. I am so so proud of him. SUPER proud.

For those of you who have no idea what Im talking about, heres the deal. There are two genes connected to celiac, one of them is pretty common and the other rare. You can have one or both genes and never ever develop celiac disease. However, if you do have one (or both) of the genes, its important to remember celiac can develop at any time – statistically its more likely that it wont though.

Usually a genetic test is used to rule out celiac, it is not used to diagnose, as it only tells you if you have the genes necessary to develop celiac, not if you actually have the disease. A positive celiac blood test (which looks for antibodies to gluten) and a positive biopsy of the small intestine is still the go to method for a celiac diagnosis. 

In other cases, the genetic profile may be done to gather information when you cant do the celiac profile, like my case. I am not eating gluten, so the celiac blood test would show a negative. You need to be eating gluten for a celiac blood test to be accurate. 6-8 weeks of daily gluten, minimum! Going back on gluten is usually called a gluten challenge or a gluten force. 

In some countries they say to test first degree relatives for celiac every 1-2 years, others say if there are symptoms only. Of course, if you have a negative genetic result, further testing would be unnecessary. I wish more countries would make genetic testing easier to get. Here in Poland its relatively cheap and we just walk in to a private lab and request it. 

Ho hum, so thats us all up to date. This closet celiac is still in the closet and now also in denial. I cant do a gluten challenge as it would make me to ill.

I also dragged hubby to the lab and had him do the genetic profile, he already has his DH diagnosis and a positive blood result under his belt, but he too is in denial, for a long time now, haha, what can you do.

I guess the name for the blog, Gluten Free & ME, is just so much more fitting now.

-Linda

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Including the different child

Time and time again here in Poland I see the food allergy kids being forgotten. They sit on the sideline watching their friends eat cake or whatever it is thats been brought to school / nursery. It makes me so incredibly sad.

In Sweden there are rules against this, schools (and nurseries) have to follow government guidelines, this means there are strict food policies and also inclusion policies. No child is to be treated different. Basically, it means, that if there is cake in class, suitable cake must be provided for ALL of the children. If this somehow fails there is a report system in place with a chain of command that you make your complaint to and there will be an investigation.

In Dubai we were lucky to have an amazingly supportive school and a food policy that suited us. There were no laws backing us up, but caring adults and a large dose of common sense, meaning a small child should be included in a school environment, not excluded. No matter what the child says, it is not ok to have a kid sit and watch friends eat. School – in my opinion – should be for learning, and once you start teaching kids that its ok to exclude another child based on their allergies, religious beliefs, autoimmune diseases, then you are going down a very very wrong path.

We teach our children to respect others, to not point at the morbidly obese, not to laugh at others misfortune, to be caring and nurturing individuals, but how then, does it make sense to have a child in a class room or lunch room going without? It goes against everything we are teaching them, and if you ask the young children themselves, it upsets them too. Most would rather have a toy or a treat that everyone can eat. It isn’t that hard really. And if it feels to difficult, then simply ban foods that exclude from a school environment. It is the right thing to do.

I haven’t had enough fight in me in the past few months to deal with this. But the fight needs to go on. The sad thing is…. it shouldn’t have to be a fight at all 😦

Please do share this post, not for me, but for all the children it affects.

-Linda

Myths and facts and insensitive bas***ds (FAQ about Celiac)

Why is your house gluten free? I mean common, its just gluten right? 

Because Celiac disease kills. Yup, it kills. Only it does it slowly without huge obvious signs. Would you keep nut dust around in a nut allergy home?

Oh common, just one bite wont hurt? 

Hell yes it will. It will hurt, ALOT. In some you cant see it, in some the effects are felt and heard, for a long time. The last contamination we had the effects lasted almost 3 months (and that wasn’t a bite, it was contamination!)

Oh yeah, Im allergic to gluten too.

No you are not. You either have Celiac disease, gluten sensitivity (NCGS) or Celiac disease. Celiac disease is not an allergy, its an autoimmune disease.

You are just being difficult / embarrassing. 

HELL YES, Im trying to save my kids life here. Did you know Celiacs who are not gluten free or are repeatedly exposed to gluten have a much larger chance of premature death then the general population? There is also a higher chance of developing another autoimmune disease, as well as the risk of malnourishment and everything that comes with it, to name just a few of reasons I am being difficult / embarrassing.

Do you really have to wipe the darn table when we go out for coffee (insert eye-roll)

Yup, I do, if you cant deal with it you cant be my friend. An 8th of a breadcrumb can be enough for a reaction, thats my kid touching the table all over and then forgetting about it and popping a finger in her mouth or touching her lip then accidentally licking it. If you are my friend, you will help me wipe and give evil looks to anyone that stares!

Its Christmas, let her have one, it wont hurt her

Sorry, Celiac disease doesn’t take holidays.

Gluten is killed off / burnt off in high temperatures

If this logic was correct we would be able to eat a loaf of bread, its baked in the oven…. or an onion ring thats deep fried…? No… not so much? Didn’t think so.

So if you can write a list of what she can and can’t eat….

Yes, because that would be so easy, why didn’t I think of that earlier! THANK YOU!

If you leave bread out overnight the gluten will evaporate.

You really must have had a really special kind of education….. like …. say what?

Don’t worry, she will grow out of it.

What part of THIS. IS. NOT. AN. ALLERGY. Did you not understand? Autoimmune diseases are like very special gifts, they are for life.

Cant you just scrape the filling out of the bread and eat that? / PEEL the KFC chicken? /Pick the croutons out / Scrape the breading off?

Yeah, sure, lets sprinkle nuts all over this donut and then scrape it off a bit with a spoon and feed it to your nut allergy anaphylactic kid! No? Didn’t think so.

Oh gluten? Thats only in pasta and bread, not that hard.

hahahahahahaha. Thats is all. Really, hahahahaha.

Its SOUP, there is no gluten in SOUP!!

SO glad you told me, so AWESOME to have met an expert on this. THANKS! Assume you checked the thickener and the stock cubes? Oh yes, those can have gluten too. Never mind the small bits of pasta / croutons / barley / whatever floating in it…..

If I threw a crumb in her mouth what would happen?

You may very well end up dead thats what would happen

I got this for me and the kids – I couldn’t find anything you/she/he could eat

Yes, because picking up some sliced melon, bananas, fruit, plain yogurt, berries, cheese slices or anything cleverly labelled (!!) gluten free would have been too difficult. I understand.

You really are fussy aren’t you.

Yes, extra specially fussy in a very special kind of way 🙂

But, she’s not going to EAT glue / playdough / waterpaint 

No, but she’s 5. How many 5 year olds do you know who are impeccably clean after playing with stuff like that? Actually, scrap that. YES, she might eat it.


Might have to edit this one and add more later. Thanks to the awesome gluten free people in the Facebook group called Gluten Free and Me (not mine) for helping some with some of theirs. The lady who was told she was only Celiac because of her pregnancy must have been the best one. Or the gluten evaporates one. Heck, some of the stuff some of these people have been told, often by close friends and relatives ASTOUND me. Surely people who know someone with Celiac would take their time to do a quick google on actual facts?

I actually meant to put proper answers explaining very carefully, until I realised just how much bottled up gluten rage I held inside! Go ahead, add yours in the comments below or on my facebook page!

For those of you with a sense of humour failure, this kind of stuff is the stuff families like ours hears on an almost daily basis, while we smile sweetly and answer politely for the 5th time at the same dinner party, these are the answers in our heads. Or at least mine.

-Linda

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