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

image credit: Donna Roberts