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How Did This Happen So Quickly?

anniej55

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srdover Newbie
srdover
Posted

Anniej55,

I don't know if they have told you which of your blood tests are low, but the low blood counts that are commonly found with celiac disease (hemoglobin and hematocrit levels) could by why you are being sent to see the hematologist. They are just trying to be thorough.

I understand how you feel about the diet. I was so afraid that I was dying that when I was diagnosed with celiac disease, it was like a gift had been given to me. I'll look forlornly at a particularly yummy treat once in a while but my life has improved so much that I view it as a small price to pay.

The first six months after diagnosis was very frustrating for me because there sometimes seemed to be no rhyme or reason as to when I would have a set back. Occasionally, I could track down a reason, sometimes I couldn't. But it did continue to get better and better.

My advice would be to not push yourself too hard and rest when you need to. Eventually you see a return to your "old self"!

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anniej55 Apprentice
anniej55
Posted
  • Author

Hi,

I've become pushy - I finally emailed my doctor and asked her about the abnormal counts (I had picked up my lab work) and then asked her what she was looking for - and could it be cancer.

She emailed me back today; she said the antiplatelet did "imply low grade ITP" ; Lupus is still being considered. She wants me to see the hematologist because he might want to do a bone marrow biopsy to check on precursors, whatever the heck those are. Now why didn't she just say that to begin with? Oh - and that leukemia was highly unlikely because the labs would be more off and I'd be more sick.

I took matters in my own hands and emailed Dr Fasano, a leading specialist. And he actually emailed me back!!! He couldn't comment on the lab work, but said that nothing would change for at least 4-6 months. I sort of figured that, but why didn't my doctor know that?

Oh well. This whole thing has been a nightmare. Not the celiac ... all the other stuff that is going along with it. Eating gluten-free is not a problem ... well, it's something I can live with. :rolleyes:

Today is my 3rd good day in a row ... and I have work to catch up on. My boss (school principal) has been wonderful, but I still have responsibilties.

Thanks for the support

Ann

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