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Follow-up Blood Work Results


heatherjane

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heatherjane Contributor

I was diagnosed with celiac in January and have been gluten-free ever since. (My original numbers were all way over 100, but I don't know specifics.) Last week, I had my antibodies retested. My doctor himself called me this afternoon and left a lenghthy voicemail about my progress. My numbers are down 75%, and I am elated to hear this news because of my high numbers at time of diagnosis, and because I've had some lingering bowel issues that have made me wonder if I was getting better at all.

Because I have "only" improved 75%, my doctor also insinuated that I have not fully grasped the diet and needed to work at it a little harder. He also said, though, that it's a possibility that I could have lymphocytic colitis as well - which could account for the frequent (unproductive) BMs with their varying consistencies (but no diarrhea). If that's the case, then he's going to put me on some kind of medication. (He's calling me back on Monday so we can discuss all of this further.)

I honestly can't imagine where I'm getting any gluten. I rarely, RARELY eat out, and the few processed foods I eat are ones that have been confirmed gluten free. (I'm going to try to eliminate them altogether and see if that helps.) Beauty products, soap, shampoo, medications, vitamins...all gluten free. I live alone, so there's no risk of a contaminated kitchen. Kissing is definitely not an issue. It's possible, I suppose, that I could be getting it at work somehow through handsoap, or surfaces in the breakroom (which I enter only when necessary). I'm paranoid of any stray crumb when I can't identify the source.

I'm inclined to think that my improvement is just slower than normal. I'm scheduled for a repeat EGD/colonoscopy on Oct 7th, so we'll know how the villi are doing at that time. I was just wondering what you guys think about it, since I know a lot of people in this forum seem to have a wealth of knowledge. I would appreciate your thoughts. :)


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    • trents
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    • trents
    • trents
      @melthebell, keep us posted. We are learning more and more about gluten disorders as time goes on. One of the things that has become apparent to me is that gluten disorders don't always like to fit into the neat little pigeon hole symptomatic and diagnostic paradigms we have created for them. There seems to be a lot more atypical stuff going on than we once realized.
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      Thanks very much for taking the time to write. I have been reading a lot about this and it definitely is not straight forward. My first port of call is the gene test - probably should have had it done before we left Australia because they don’t run the test in Japan. So I’ve ordered a third party test kit and just swabbed his cheek. Then we start the gluten challenge and see how it goes. 
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