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Negative Blood test, positive biopsy?

WooHoo

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WooHoo Newbie
WooHoo
Posted

Hi everyone! 

So I have been having chronic D for about 5 years which my PCP always blamed on IBS and I never pushed further until I ended up in the ER twice in the span of two months from dehydration. She then ran some tests and it turns out I’m very B12 defiecent. I then got some more tests and I do have the antibody against the transporter of b12 which explains that away. I also had a full celiac panel which all came back negative, but i also was not eating a lot of gluten at the time. I finally got a GI referral after the B12 result and they ordered a colonoscopy and endoscopy based on my symptoms, b12 defiecency, and the fact that my uncle has severe Crohns. The doctor originally said everything looked fine but the nurse called me back with the pathology results today and said there was “inflammation in my small intestine indicative of celiac”. Of course I was too stunned to ask anymore and she said to schedule a follow up appointment. I don’t understand if this means I actually have celiac or there will need to be more tests. She also didn’t say what was actually on the pathology besides inflammation. It will take me weeks to see a GI because I am moving across the country this weekend and I’m not sure if I should start the gluten free diet now or wait? 

Any advice or input would be greatly appreciated :) 

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cyclinglady Grand Master
cyclinglady
Posted
49 minutes ago, WooHoo said:

Hi everyone! 

So I have been having chronic D for about 5 years which my PCP always blamed on IBS and I never pushed further until I ended up in the ER twice in the span of two months from dehydration. She then ran some tests and it turns out I’m very B12 defiecent. I then got some more tests and I do have the antibody against the transporter of b12 which explains that away. I also had a full celiac panel which all came back negative, but i also was not eating a lot of gluten at the time. I finally got a GI referral after the B12 result and they ordered a colonoscopy and endoscopy based on my symptoms, b12 defiecency, and the fact that my uncle has severe Crohns. The doctor originally said everything looked fine but the nurse called me back with the pathology results today and said there was “inflammation in my small intestine indicative of celiac”. Of course I was too stunned to ask anymore and she said to schedule a follow up appointment. I don’t understand if this means I actually have celiac or there will need to be more tests. She also didn’t say what was actually on the pathology besides inflammation. It will take me weeks to see a GI because I am moving across the country this weekend and I’m not sure if I should start the gluten free diet now or wait? 

Any advice or input would be greatly appreciated :) 

Well, do not leave with all your medical records!  Some celiacs are seronegative.  Did you know that?  Besides, you stated that you had been gluten light.  When you said full celiac panel, I assume this included all the TTG, EMA  and DGP tests?  I would go gluten free now and then find a new GI to review your charts.  If your symptoms improve, you most likely have your answer.  If your  symptoms  do not improve you can figure out what else might have caused the damage that mimics celiac disease damage (e.g. Crohn’s, etc.).  

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