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Phedre

Frustrated!

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I called this morning to get the results of my blood test and after getting the run around and being transferred every which way for almost 2 hours, I finally got a call back...

They said my test was "negative." I asked for more details, asked specifically what was run and what the exact results were but was just told that it indicated a negative result. I also asked what we should do next, especially since my doctor had spoken to me about doing an endoscopy regardless of a positive or negative but I was told I would receive a phone call and have heard nothing back since.

I'm trying very hard to be patient but this is driving me crazy! I feel like no one is taking this seriously except for me. I'm going gluten-free anyway because confirmation by diet is good enough for me but I want to wait until after the biopsy IF I even have one at this point...

Ugh, I just feel like pulling my hair out... It's like every other time - surely I can't know what's going on with my body and if the doctors think it's just IBS, it's just IBS... This isn't right... I've started journaling my diet and symptoms because I'm hoping that will at least back me up somewhat.

::sigh:: Sorry for the vent but I'm just getting fed up with the medical system, especially down here in New Orleans. :angry:

Edit: Wait - got a message from the lab to talk about results - nothing specific but the doctor said something about a treatment plan so I am very confused... ::shrugs:: Will keep everyone posted...

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Hi, I see in your siggie that your sister tested positive for celiac in a blood test and biopsy....so you have a good chance to have it too, with those symptoms.

Sometimes it may take a long time and a lot of damage before the tests for celiac turn positive, and various labs have dfferent cutoff limits, some only detect 60% of biopsy prove celiacs in a recent study where they sent blood samples to a lot of different labs....

nora


gluten-free since may 06 after neg. biopsy symptoms went away and DH symptoms which I had since 03 got gradually better.

daughter officially diagnosed celiac and casein intolerant.

non-DQ2 or DQ8. Maybe DQ1? Updated: Yes, double DQ5

Hypothyroid since 2000, thyroxine first started to work well 06 on a low-carb and gluten-free diet

Lost 20 kg after going gluten-free and weighing 53 kg now. neg. biopsy for DH. Found out afterwards from this forum that it should have been taken during an outbreak but it was taken two weeks after. vitaminD was 57 nmol/l in may08)

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Phedre,

You have the right to see your test results, so be persistent and keel calling. Also, ask if you could schedule an endoscopy. If they refuse, tell them you are going to find a new doctor. I would suggest seeing a different doctor for this anyway. It's better to see someone who really knows what they're doing. Good luck with everything,

-Brian


Celiac Sprue

Multiple Food Allergies

Diagnosed June 2006

Stopped Eating June 2007

IV Nutrition: 6/27/07 - Present

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