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Negative biopsy

LynseyClare
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LynseyClare Rookie
LynseyClare
Posted

Hi, I've had left sided discomfort and I've suffered with constipation for a long time. The left sided discomfort is just under my left rib and travels around to my side sometimes around to my back and down to pelvic area. I originally went to the docs in July. In 5 months I've had an abdominal ultrasound, a CT scan, and finally a blood test that showed extremely high levels of antibodies for celiac disease. I was kind of relieved thinking this explains all of the discomfort I've been having, and constipation too. I had convinced myself I had cancer /a tumour or something. I have pretty bad health anxiety. I was referred for an endoscopy which I had two weeks ago. Today I found out that my biopsies taken have shown that celiac is unlikely :( :( :( However on the report I brought home with me after the endoscopy it says "an area of scalloping mucosa seen" and that I had duodenitis. 

I'm so upset and frustrated. I have an appointment in January to speak to the gastroenterology consultant. But do I cut gluten out anyway? Can the biopsy be wrong? My daughter and son (19 & 14) both have sky high levels for celiac too and they've both been referred for endoscopies. So I was convinced I had it. I always thought I had IBS until I was told it could possibly be celiac it all fell into place! And now I've been told it probably isn't!! Now I'm thinking what else could it be and I'm worried its something horrible. Has anyone been in this position?? 

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Scott Adams Grand Master
Scott Adams
Posted

Given your extremely high tTG test for celiac disease that you mentioned here:

I think you should assume that you have celiac disease and/or non-celiac gluten sensitivity, and go 100% gluten-free. If your symptoms go away, then you have your answer.

RMJ Mentor
RMJ
Posted

In addition to seeing if your symptoms go away on a gluten free diet, as Scott recommended, you can see if your antibody levels go down.

Scott Adams Grand Master
Scott Adams
Posted

Yes, good point. Get another blood test in 6 months or so after going gluten-free. If gluten is your issue, then the levels should go lower.

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  • Recent Activity

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      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results. Thank you
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      - trents replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response.
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      - trents replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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    • Ello
      Small Bowel Resection 12 inches

      By Ello · Posted

      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results.  Thank you
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      Small Bowel Resection 12 inches

      By trents · Posted

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      Small Bowel Resection 12 inches

      By Ello · Posted

      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response. 
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      Small Bowel Resection 12 inches

      By trents · Posted

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      By Ello · Posted

      I have always eaten gluten and never stopped until my recent episode. I started more wheat products as my Dr. requested for the Tissue Transglutaminase Iga Antibody. mye result Value <1.0 Value interpretation: <15.0 Antibody not detected > or =15.0 Antibody detected I do not understand any of it. After eating all that wheat product my body exploded with all sorts of symptoms. I stop gluten ASAP. I am still in the healing process. I started having issues after my surgery. 
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