Frustrated With Doctors And The Whole Process

[Mmama]

deleted

[dkelm]

I do think it's always smart to go with your gut, but to also listen to doctors. Can the doctor run some other blood tests? You mentioned C.F., they can run a blood test to see if she has any of the common mutations. (My youngest sister had C.F.) The symptoms in babies are very similar when you compare Celiac to C.F.

[Mmama]

I do think it's always smart to go with your gut, but to also listen to doctors. Can the doctor run some other blood tests? You mentioned C.F., they can run a blood test to see if she has any of the common mutations. (My youngest sister had C.F.) The symptoms in babies are very similar when you compare Celiac to C.F.

Yes, they ran all the other tests she wanted (minus the biopsy). Negative.

[weluvgators]

Hey, Mmama,

I am frustrated with doctors and the whole process too! I just keep plugging away at it because the issues are not just going away - no matter how hard I pray!

Keep looking for doctors to work with you. It is not easy to find them. We are still going in circles. Our case is becoming so "rare" and "unusual" that they now want us to go get more testing. But they don't know what testing . . . and they haven't been able to articulate the purpose of the testing. We keep looking for help figuring out our "rare" and "unusual" circumstances . . . that oddly enough are quite consistent with many things discussed on this board . . .so really how "rare" and "unusual" is it? Our problems seem to be made worse by the shared environments that we are subjected to as we try and school. Our pedi GI office has already asked if we have considered homeschooling - which we have. But the GI doctor was quick to recognize that our super rare and unusual reactor (NOT our super duper silly girl) exhibits a high need for school.

Big hugs! You are not alone. And I have only managed to figure out that there are NO easy answers. I am struggling to find answers that even make sense - I don't even care about easy anymore!!