Thank You all for your kind messages sent after my last post, I have had so much support from all corners of the world. Thank You.
Celiac kid is better, first day back in school today, the all clear has been given. I remain positive, or at least try. Because really, what options do I have? She has been better since our move, a ton better, and this was a set back yes, but you need to look on the bright side – always – or the bad stuff will consume you and make you not a very good person. So we take it all in our stride and carry on. My hero, my inspiration, my strength is Celiac kid herself. She has been through so much and never once complains. She just accepts everything, because this is normal to her. Hopefully 2014 will be a HEALTHY year. Lets hope so. Fingers crossed. If you are a person who prays, please include her in those prayers. She needs all the help she can get.
For 2014 I hope we have less then 2 hospital stays, I hope the specialist we have been put in touch with will help us find some answers to why these pneumonias keep coming, and I promise, that this is the year me and my son finally do the Celiac gene test. Its long overdue.
Whatever your wishes and hopes are for 2014, I hope they come true. Happy New Year from me and the gluten free family 🙂
Have you had her tested for IgA deficiency? It is not uncommon for Celiac patients to have both, and that might explain the pneumonia?
Its interesting you should say that, i was tested for IgA deficiency after my negative bloods for celiac as they suspected I had it, but no. We have it in the family, will chase her labs from when I was tested and see if they did her too. But dont people with IgA deficiency test neg on Celiac bloods usually? We have IgA deficiency in the family, so Im pretty sure they must have ran that on her too, but glad you pointed it out so I can make sure! Thanks!
I have no idea what the correlation is between Celiac and IgA Def in general, but Mom to Mom, I would leave no stone left unturned! Seems to me that there are a whole host of auto-immune disorders that get confused and mis-diagnosed, so finding a list of immune system disorders is where I would start. Read, read, read and then narrow down the tests that you want her to have just to be sure. I had pneumonia and bronchitis frequently as a child, with Celiac, so it could just be that simple, but what is worrying me is her low oxygen levels… those seem uncharacteristic? idk Don’t give up!