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New doctor claims that blood test can detect celiac without gluten exposure.


moleface

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moleface Explorer

I had an intake appointment with a new PCP today, and she tried to order a celiac antibody test without me having eaten gluten first. When I countered with "I'm not trying to be argumentative or claiming that an internet search trumps your medical training, but all the literature says it isn't possible to test positive without eating gluten first. Most recommend twelve weeks of exposure", she insisted that the elevated antibodies would always be present in a celiac sufferer regardless of whether they've eaten gluten. I'm not just extrapolating from what she said or putting words in her mouth - she specifically said that.

Has anyone else heard this? Obviously it goes against literally all the accepted information we have on this disease, but I'm wondering if doctors are being trained that this is correct. It wouldn't surprise me, considering that I previously had a gastro specialist insist that eating gluten for two days was sufficient for me to test positive.

She tried to urge me to take the blood test, claiming that it would bolster my case if I tested positive but supposedly wouldn't hurt my case if I happened to test negative. I had to talk her out of it. I know how that goes - the last time I let a PCP order an impromptu celiac blood test without gluten exposure, all subsequent doctors told me that the more recent negative test outweighed the older positive test. This new doctor is nice and didn't say anything derogatory, but I suspect that declining medical testing but still insisting that I have the disease is considered to be a sign that I'm being an irrational hypochondriac.

It's disheartening that every doctor I've encountered thus far over the past four years has totally dropped the ball on recognizing my illness, including the students from a nearby dental college who fixed my celiac-decimated teeth. Dentists are supposedly the leading-edge of detecting the disease, but these dental students overlooked a textbook case of celiac disease's toll on the teeth, with huge missing chunks of enamel that appeared overnight, including a new one that blatantly appeared between the appointments to install veneers. They could tell from the condition of my teeth that I was a meticulous flosser and brusher, but they insisted that acid reflux (which I don't have) caused the enamel loss. Then how did more enamel manage to die off between appointments? Acid reflux would cause gradual tooth erosion, not abrupt.

Whatever. I'm so over this crap at this point. I'm never trying to convince another doctor. This has been a frustrating multi-year ordeal that I wouldn't wish on my worst enemy.


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cyclinglady Grand Master

You are totally correct.  You must be on a gluten diet for all celiac testing including small intestinal biopsies.  

https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

https://www.mayoclinic.org/diseases-conditions/celiac-disease/diagnosis-treatment/drc-20352225

 

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  • Posts

    • Mari
    • trents
      Sorry, I think I got you mixed up with another poster.
    • rei.b
      I hadn't been eating gluten free before having the antibody test done. I started eating gluten free after having the test done because the gastro PA told me to eat gluten-free for 6 months. I'm now 3 months in.
    • trents
      I tend to agree with RMJ. Your doc took the reasonable and practical approach to diagnosis. All things considered, it was the right way to go. However, if you have first degree relatives that show signs of possible celiac disease, urge them to get formally tested before they start the gluten free diet.
    • RMJ
      It sounds like you have a very reasonable GI doctor, who diagnosed you based on family history and symptoms after eating gluten. I would consider you lucky! The other option would be to make yourself very sick by doing weeks of a gluten challenge prior to an endoscopy.
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