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Positive Doctor Conversation


fedora

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fedora Enthusiast

Our doctor called today about tests my hubby had done(not related to celiac). I haven't seen him in about 5 years. I usually see the lady PAs for my yearly exam. I told him I had gave up gluten several months ago. He sounded excited and said." You just may have sprue." I said there was no way I would go back to eating gluten just to test for it. He said there were several ways of testing- blood, endoscopy, and elimination diet. I said I was still having some issues, mainly muscle and joint pain, but lots of my symptoms were totally gone. He said Great, at least a big chunk of your symptoms are gone. I was so relieved that he mentioned the elimination diet. Yeah. Sadly, 5 years ago he mentioned celiac but said I probably didn't have it because I didn't have chronic D. I was doing better at that time (then when I first went in)so I went home diagnosed with IBS and an over active immune system. Oh well. I was actually doing better at the time and blamed it all on recovering to going overdue with twins and then nursing them for 2 years. Of course now I think it was a combo of healing and giving up wheat because of my rashes that caused me to feel better and not pursue further testing at the time. At the time I was horrified by the idea of giving up gluten. I had never heard of gluten in other things then wheat. I didn't know anyone with it either to know all the various symptoms. At least now I know I can go in and be listened to if I need further testing without the formal diagnosis already.


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lizard00 Enthusiast

That is soo awesome!!

I had a great experience with my doctor the other day too, which fully restored my hopes that one day I'll feel better again. For my Celiac panel, I saw the PA... this time I made sure to see the doc. I told her all the things that cleared up when I went gluten free, and she said she really wanted me to pursue the Celiac possibility, even though the tests were negative because I could still be eating something that is bothering me. She is sending me to another GI, since the last trip was a nightmare. She still tested me for other things, but it was so refreshing to hear someone validate me (other than my family) and seem as committed as I was to figuring out the rest.

So to all you others out there, there are a few good docs remaining. Don't give up hope yet!!!

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    • 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—
    • trents
      @GlorietaKaro, your respiratory reactions to gluten make me wonder if there might also be an allergic (anaphylaxis) component at work here.
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