Its been a while since I blogged about our journey. I feel like there is nothing new, just more of the same….
Christmas came, we were all sick. Celiac kid had another pneumonia, older brother had a virus with high fever for a week, and I had a bad throat infection. Merry Christmas to us!
I finally got around to open our letter from Karpacz and make the next set of appointments, I just wasn’t emotionally ready until now. We already went and saw the celiac specialist, and he is convinced her Celiac is WELL under control and all her vitamin levels etc point to us doing a great job in not exposing her. He is putting the not growing down to long term use of steroids, and he agrees with the Karpacz specialists that there is probably something wrong with her immune system. We are now booked in to go to yet another hospital and run a series of tests there. If they come up with nothing there, there is one last specialist in warsaw that may be able to help us…. my stomach my stomach is in knots just saying this. After being told about the next hospital stay I felt like I couldn’t breathe for two days, I was walking around my house just trying to remain sane…. the stuff in my mind, the pressure, the thoughts whirling around… its unbelievable. How the hell do you stay normal through all this… how do people cope?
Needless to say the whole family is under a huge amount of stress right now. Lost it with some idiot online the other day who called people who eat gluten free “part of the gluten free cult”. People really need to think before they speak. Such stupid, idiot remarks are totally unnecessary. Im pretty sure no one would say “insulin cult” about diabetics or “chemo cult” about cancer patients… nooo, because that would be offensive. Joking about Celiac and glutenfree should be no different.
My family have been through so much, we don’t need belittling by total strangers (or assholes!).
Im tired beyond belief. Not the kind of tired that can be fixed by sleep, but the kind of tired that leaves you spending a whole day just sitting and staring and doing nothing because you cant get your head together.
What else? Oh yes…. big brothers Celiac test came back. Inconclusive.
I mean, hello!!???
I actually had to laugh, its like some great big joke.
Big brother will now eat gluten for one more month with more added in as he may not have been eating enough of it, then we will do the bloods again and also the genetics and if needed the biopsy. He’s being brave, but he wants to stop eating gluten now because he says he feels confused. Im guessing he’s trying to describe brain fog? (A common symptom in celiacs). Either way, its all good, we just need to know for sure so we can do the right thing for him. Usually he eats 98% gluten free anyway, only has gluten at friends houses. Obviously if he’s celiac that cant continue.
So, thats my update.
Happy New Year!
Ooooh, and we had snow and made snow angels!! 😀