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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
      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
    • jenniber
      hi, i want to say thank you to you and @trents   . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood test that day. i just got my results back and it indicates celiac disease i think 😭   im honestly happy bc now i KNOW and i can go gluten free. and i am SO MAD at this doctor for dismissing me for a simple blood test that wouldn’t have cost her anything !!!!!!!!!!! im sorry, im so emotional right now, i have been sick my whole life and never knew why, i feel so much better already   my results from labcorp:   Celiac Ab tTG TIgA w/Rflx Test Current Result and Flag Previous Result and Date Units Reference Interval t-Transglutaminase (tTG) IgA 01 28 High U/mL 0-3 Negative 0 - 3 Weak Positive 4 - 10 Positive >10 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy. Immunoglobulin A, Qn, Serum 01 245 mg/dL 87-352
    • JoJo0611
      Thank you this really helped. 
    • Samanthaeileen1
      Okay that is really good to know. So with that being positive and the other being high it makes sense she diagnosed her even without the endoscopy. So glad we caught it early. She had so many symptoms though that to me it was clear something was wrong.   yeah I think we had better test us and the other kids as well. 
    • GlorietaKaro
      One doctor suggested it, but then seemed irritated when I asked follow-up questions. Oh well—
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