This is going to be quick, as I am exhausted and all I can think about is taking a hot shower and sleeping in my own bed.
We are home! We are all pleasantly surprised that they let us go tonight, and Charlotte is thrilled to be home.
The rest of the today in a nutshell...
GI doc (who looks exactly like Robin Williams) came and diagnosed Charlotte with celiac disease after receiving the results of her screening. Her levels were pretty high, and most likely this is the reason for her increased fatigue, lack of energy, and willingness to want to do any activity. It also most likely is the reason for her diarrhea weight loss, and crankiness. Yay! We have an answer. The solution? A gluten free diet. There is a learning curve, but I am sure it will soon become a way of life. We meet with a nutritionist on Thursday for a 3-hour gluten-free living crash course.
I wish that all the worry could be erased. However, celiac disease, unfortunately is not the reason for her low platelets and white blood counts. We don't know the reason for this, and will still monitor them weekly over the next few months. I wish today could have ruled out leukemia completely, however, there is still the possibility that we caught the low platelet level early, and did the bone marrow biopsy too soon. Kind of a weird concept hey? Catching cancer too early?
Celiac and leukemia can be related. Celiac and autoimmune disorders (like thyroid issues) can also be related. We hope with diet changes, symptoms will improve and blood counts will return to normal.
Again, I can't thank you enough for your support.
Nice to have a partial answer, at least. We've kept Cora gluten free for some time (although are currently testing her on wheat per her GI doc's instructions.) You'll get there but it does involve doing research and getting used to the alternatives. Still keeping my fingers crossed that her blood counts even out.
ReplyDeleteWelcome home Charlotte! I hope everyone is able to catch up on sleep and good luck learning all about gluten-free diets. It sure seems like you hear a lot about that these days, so hopefully the transition will not be too difficult. Will continue to hope to hear good news regarding her blood counts.
ReplyDeleteI am just catching up. Consider taking her to a Naturopathic Dr. I have been learning TONS about ways to help the GI system through mine. She is helping me and Calvin. Also, look up Maria Emmerich. She gives many recipes for grain free foods, not just gluten. Cal and I were dairy and gluten free last year. He is starting to get some now and then.
ReplyDeleteGosh, I have a ton to share. There are tummy healing supplements. Cal takes one called Endefen - a Metagenics product. He is also now taking Metagenics' complete meal replacement to get in all his nutrients. It is dairy and gluten free. Just be careful not to over do the sugar or dairy. That will reek havoc on her GI system too. If you want to talk about this more just leave me a message on my blog.