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Inconclusive Blood Tests, Highly Suggestive Biopsy


PepperandDaisysMommy

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PepperandDaisysMommy Newbie

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

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

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

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

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
      Yes, it does. And joint pain is another celiac symptom that is now well-recognized. 
    • ThomasA55
      Does my iron loss sound like celiac to you?
    • trents
      Being as how you are largely asymptomatic, I would certainly advise undertaking a gluten challenge in order to get formal testing for celiac disease. We have many forum participants who become violently ill when they undertake a gluten challenge and they therefore can't carry through with it. That doesn't seem to be the case with you. The reason I think it is important for you to get tested is that many or most people who don't have a formal diagnosis find it difficult to be consistent with the gluten-free diet. They find ways to rationalize that their symptoms are due to something other than celiac disease . . . especially when it becomes socially limiting.  The other factor here is by being inconsistent with the gluten free diet, assuming you do have celiac disease, you are likely causing slow, incremental damage to your gut, even though you are largely asymptomatic. It can take years for that damage to get to the point where it results in spinoff health problems. Concerning genetic testing, it can't be used for diagnosis, at least not definitively. Somewhere between 30 and 40% of the general population will have one or both of the two genes known to be associated with the development of active celiac disease. Yet, only about 1% of the general population will develop active celiac disease. But the genetic testing can be used as a rule out for celiac disease if you don't have either gene. But even so, that doesn't eliminate the possibility of having NCGS (Non Celiac Gluten Sensitivity).
    • ThomasA55
    • trents
      Welcome to the celiac.com community, @ThomasA55! Before I give my opinion on your question about whether or not you should undergo a gluten challenge, I would like to know how you react when you get a good dose of gluten? Are you largely asymptomatic or do you experience significant illness such as nausea and diarrhea? You mentioned intermittent joint pain before you began experimenting with a low gluten diet. Anything else?
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