Wednesday, May 16, 2012

Really Good News and Info!

I recently went to my primary care doctor and had some bloodwork done to test the gluten stuff.  Turns out I am now diagnosed Gluten Intolerant, not Celiac Disease, and she stressed that I must stay on a gluten free diet to help heal my liver and skin autoimmune diseases (Wow! I'm not crazy, imagine that!).  And she said, honestly that I may have Celiac Disease, but we only did a 2 week gluten challenge - which may not have been enough to get the celiac antibodies back.  But I couldn't handle anymore than the 2 weeks.  I was really feeling cruddy - I didn't think I felt so bad before, but either it was more noticeable after being gone, or maybe it was legitimately worse since it was gone then reintroduced.  But all my skin conditions had horrible flareups, I was EXHAUSTED, super depressed, my heartburn / reflux returned and I was so bloated my pants were too tight! I was so happy to just stop that.

She also agreed that keeping Zoe off gluten, as much as possible, is a good idea.  She, in general, said it's best for really everyone to avoid the types of foods that contain gluten (processed, packaged foods, breads, junk food, etc).  She said since I'm gluten intolerant, it means that I don't have to be AS vigilant as celiac - like I shouldn't worry SO much about cross contamination or whatever, but she said I very much need to keep gluten out as a whole.  And for Zoe, she said keeping MOST of her diet with the whole, real foods that I've been doing is best.  But for me not to stress if someone 'glutens' her once in a while - the fact that she's eating right most of the time will probably protect her.

So all very good news!

And she did another LFT to see if the 2 week challenge affected my liver.  I am happy to say that my numbers are still down!  

1 month ago (4/16):
Bilirubin  1.0 
ALP 194 
AST  59
ALT  101

5/14 (Everything is down a little more, but I'm guessing it was down further than this and the challenge probably brought it up a bit, but it's still good! And honestly, maybe I didn't eat enough gluten - it just made me feel so bad, I just couldn't - so I only ate 2 slices of whole wheat toast each morning - well that one time I had a small Schlotzsky's for lunch - just kind of a final farewell!)

Bilirubin 1.0
ALP 160
AST 36
ALT 56

Bili is normal, ALP is only 30 points from normal, AST and ALT are both 1 away from being normal! So this is all VERY good.

As a side note- My doctor actually told me I am doing everything right and she believes I might actually COMPLETELY heal my liver! Officially there is no cure for PBC, but she said given my numbers and the relief I have from my other autoimmune/skin conditions, she believes I can definitely BEAT THIS! 

It is just beyond words to hear this coming from her!

Hope everyone is having a great week!!

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