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Well The Dr Called...
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8 posts in this topic

I am so mad at myself. I was in a meeting with my boss and my phone rang - of course it was the dr calling me back. She said the blood tests came back negative for celiac - however the best way to diagnose is biopsy doing an edoscopy (which i had done last year but not checked for celiac - i don't htink they did any biopsy of the intestine. Also I haven't really been digesting a lot of gluten since on the atkins diet. She was surprised the iron infusion she gave me didn't give me a "big boost" of energy. I said yeah i feel a little better but its not like I suddenly feel great. I asked if i would be getting any more iron and she said no the dosage she gave me will bump up my hemaglobin to 140 and thats enough - i was at 128. However I thought the point of the iron was to get my iron and iron stores up which were both at 5. Anyway the reason I'm mad is cause I didn't ask her my questions - guess I was caught off guard with calling while i was with my boss. I also didn't say much to her - i was like a deer in the headlights! So i go back on March 1 for my follow up. She wants a copy of my last endoscope and a celiac disease copy of the actual gallium scan that came up positive for inflammation in my marrow - not the summary but the actual test so it can have a second opinion. I do see my family dr in January i will talk to him too - he also said if i wasn't consuming gluten it could come back negative. I wanted to ask for a copy of the blood results but forgot - so will call back to get a copy faxed to me - so I can see what she tested for. i did ask how long for the folate to kick in (I am on supplements) she said that would take a month - so i might just have the double whamny of o low iron and low folate causing the fatigue. Mind you - still don't know why i have such low values since my diet is very rich in both. I also wanted to ask to test my other vitamin levels to see if any other levels are low. Guess just more waiting.

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Yes. You need to call back and get more tests done.

It is possible you have Celiac disease. (You may not have consumed enough gluten before testing.) You could opt for genetic testing (not a perfect test either, you can have the 2% known miss rate, human error rate for blood test is 30%, so don't fully believe the 99% accurate statistic) It is possible you have Celiac and another related disorder.

Severe anemia will land you in the hospital pretty quick. I don't think you should put off any further testing for causes. (i.e. Pernicious anemia)

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...

...human error rate for blood test is 30%, so don't fully believe the 99% accurate statistic

...

Human error rate?? :huh:

I'm not sure what this is supposed to mean & can't think of any way it makes sense. Is it saying that lab techs are inept, spilling/contaminating samples or losing vials?

I just keep saying "human error rate" in my head, thinking maybe some way to interpret it will percolate forward.

30% is literally an unbelievable number & I'm extremely curious about the details & where it came from, if you don't mind.

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The false-negative rate (maybe that's what mommida means) is about 25-30% and that's documented in a lot of medical literature...it's not really human error from what I understand, but just a diagnostic error for that particular lab test.

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From what I understand Celiac and maybe even NCGI makes it harder for us to absorb iron. I am a red meat eating fool with a load of vitamin C to help it go down and still have to take iron pills to keep from cramping so bad I wake up screaming with leg cramps. Plus I load on Black Strap Molasses too.

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I am waiting on the results of my genetic testing and I'd be really grateful if anyone has references on those figures.

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    • I react to both wheat and barley.  I've opted to just go completely gluten free, for the sake of simplicity and my sanity.  I don't have a diagnosis of celiac disease, but I strongly suspect it.  Unfortunately, I'm not willing to endure the misery of staying on gluten long enough to pursue further testing.  I just know I need to avoid the gluten grains, so I do.  
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