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Inconclusive Blood Tests, Highly Suggestive Biopsy

PepperandDaisysMommy

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PepperandDaisysMommy Newbie
PepperandDaisysMommy
Posted

I am a 32 year old woman with no children. For about a year now, I have been suffering from digestive issues that have almost become normal to me. I regularly head straight to the bathroom after eating. I have battled with stomach cramping, bloating, diarrhea, hemhorroids, and mild acid reflux. I finally started seeing a GI specialist, who scheduled a colonoscopy and endoscopy. This was his first route because of my family history. My father suffers from severe acid reflux, my grandfather passed away from stomach cancer, and my aunt is a colon cancer survivor. After getting the biopsy results from my endoscopy, my dr. ordered 3 blood tests to check for Celiac. One test came back positive, one came back negative. The third was mildly positive. The biopsy was "highly suggestive" of Celiac. The dr. has ordered two more blood tests, but has said that he will probably give a formal diagnosis of Celiac at my next appt in January. Truthfully, I can't wait that long! Is it possible to be a Celiac with inconclusive blood tests and a positive biopsy?? This is all so new to me and any help would be appreciated.

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Ahorsesoul Enthusiast
Ahorsesoul
Posted

You can have celiac disease or be gluten intolerant with all tests even showing negative results.

You can go gluten free at anytime. The sooner you do the sooner you will feel better.

Isn't it nice to know that it's not all in your head?!

Welcome to the gluten free world.

happygirl Collaborator
happygirl
Posted

A positive biopsy is the gold standard for a Celiac diagnosis, so that is technically the "only" way to have a "true" confirmed case of Celiac. Many doctors are starting to diagnose on bloodwork alone. You don't have to have + bloodwork AND + biopsy to be diagnosed as a Celiac.

Continue to eat gluten until your next appointment so that you can finish any testing they request. However, if you are concerned about waiting until your next appointment, it may be worth it to call them and discuss your concerns - maybe they can get you in sooner, or run the bloodwork before your appointment.

ravenwoodglass Mentor
ravenwoodglass
Posted

If you have had the biopsy and blood tests you are done with celiac testing. You can start the diet. Your body may give you the answer before you go back to the doctor.

nora-n Rookie
nora-n
Posted

Yes, even the best blood tests will normally only be positive in about 80% of cases!!

That means that people have symptoms, and a positiv e biopsy, and still the blood tests will miss about 20%.

And what about partial celiac, where celiac is only patchy? The blood tests then are even more inconclusive.

(yes, the biopsy is the test that really counts)

nora

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    • trents
      Unexpected gluten exposure risk from cultivated mushrooms

      By trents · Posted

      Welcome to the celiac.com communiuty, @Matthias! Yes, we have been aware that this can be an issue with mushrooms but as long as they are rinsed thoroughly it should not be a problem since the mushrooms don't actually incorporate the gluten into their cellular structure. For the same reason, one needs to be careful when buying aged cheeses and products containing yeast because of the fact that they are sometimes cultured on gluten-containing substrate.
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      how much gluten do I need to eat before blood tests?

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