Negative Celiac blood test, but positive need to give up doughnuts?
October 1, 2013 1:41 PM Subscribe
I love doughnuts--and never turning down a host's refreshments--so hard. And I don't want to be "that person." But I need to feel better, so I'm looking for experiences (and help cutting through the science and the woo) on giving up gluten (or not) even with a negative Celiac blood test.
posted by anonymous to health & fitness (24 answers total) 1 user marked this as a favorite
Got very ill with a GI illness on recent exotic travels. Most symptoms (3 months later now) have subsided except for weakness/fatigue, occasional loose stools (2-4x week)....and an inability to gain back the 10 pounds I lost off of an already slim frame, even with a diet of 2000-30000 calories per day (I'm trying to get back to my pre-departure weight of 126, but stalling out at 116-118).
Infectious disease specialist I just finally saw ran no tests except a basic blood panel (she decided before I even opened my mouth, literally, that "People always think they caught a parasite but it's just diarrhea and then they want unnecessary tests," told me about the worried--and wealthy--well she's encountered who meet this profile, etc., even though I dragged my feet in coming in until 3 months had gone by and still felt sheepish about it), but interestingly, she did also order a test for celiac. Her theory was that, since I already have autoimmune thyroid disorder, the stress of the travel-related illness (no nausea but 2 weeks of constant cramping and diarrhea to the point of hospitalization for IV fluids) might have triggered an autoimmune response to gluten as well.
The blood test came back negative. Most of what I read on medical/hospital sites says that the false negative rate is very low, and mostly the result of having a condition which invalidates the test markers. At the other extreme, there are people (mostly consumers without medical backgrounds, it seems like) who claim false negatives happen all the time, etc. I don't know what to think, and frankly, my difficulty at being taken seriously by doctors beyond their 10 second heuristic means I have difficulty trusting my ability to just go to my primary care person or another specialist about this. (And before some MD reading this assumes it's because I'm some worried-well patient of Dr. Google: my autoimmune disorder, which runs in my family and was--finally--detected at a very very high antibody load, was something I couldn't get anyone to run the "unnecessary" test for for 10+years; I have another physical, obvious disorder that was debilitating before it was treated that I couldn't get anyone to run the test for for 15 years, even though I ticked off all of the warning signs for it except "be a fat, middle class middle aged white male.")
So can anyone help me with, again, experiences (and help cutting through the science and the woo) on giving up gluten (or not) even with a negative Celiac blood test?