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Confused on test results

Deades

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Deades Contributor
Deades
Posted

I did not have a blood test.  Had the scope looking for a stomach ulcer.  One doctor says I have celiac and another says no.  What do you think?

Here are the notes from my endoscopy:

Mild chronic duodenitis with mild to moderate villus blunting compatible with changes related to celiac disease in the appropriate clinical and endoscopic setting.  No dysplasia or malignancy identified.

Stomach Antrim biopsy:. Gastric mucosa with minimal inflammation. No dysplasia or malignancy identified.

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cyclinglady Grand Master
cyclinglady
Posted

While it is a shame that your doctor did not order a celiac blood test (are you sure?), he did find villi damage.  This can occur for many reasons but the predominant one is celiac disease.  You were anemic and had osteoporosis at the time of your diagnosis.  It is too soon for to for a bone scan, but how is your anemia?  Improved on a gluten free diet?  That should confirm the diagnosis and set your mind at ease.

If you look at the history of celiac disease, biopsies came first, long before blood tests. 

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Deades Contributor
Deades
Posted
  • Author

There was no blood test for celiac because he was looking for a stomach ulcer.  Celiac was not even a thought at the time. I have always been anemic but my red blood cell count was also low.  I am scheduled to see the doctor in midSeptember and will have my first blood test to check on iron levels prior to that visit.

cyclinglady Grand Master
cyclinglady
Posted

I have been anemic my entire life.  It was always blamed on my being a women and Thalassemia (genetic anemia), but I also had iron-deficiency anemia that waxed and waned.  Since I have been gluten-free for four years, my iron-deficiency anemia is long resolved!  I still have Thals, but my body has long adapted.   I am not ever going to win the Senior Olympics, but I can hold my own!  

My ferritin levels did go up with my three month check-up.  Since my hubby had been gluten-free for 12 years prior, I knew the diet well.  If your results are not perfect, give yourself more time.  The learning curve for the gluten-free diet is steep.  

It took much longer for other "hidden" issues to resolve (fractures, neuropathy, food intolerances, etc.).  

  • 3 weeks later...
ironictruth Proficient
ironictruth
Posted

Ok, I am looking through your old posts now after commenting on your recent one.

Ditto with cycling lady. Shame on them for not ordering the freaking celiac panel. Why would they not order it after the scope to confirm?

Will your insurance at least cover the genetic test? 30% of the population has the gene and only a small percentage develop celiac. However, at least you would know if you had a low or high risk gene. It might make you feel more confident in the diagnosis, especially having a doc tell you he thought the diagnosis of celiac was perhaps not correct.

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