Question About Testing And Symptoms

[tiredandsick]

I have a family member diagnosed with celiac via biopsy.

I am young and have been diagnosed with anemia and low bone density.

I have been having classic celiac symptoms and really bad canker sores.

I had a negative blood test and negative biopsy, but then a positive enterolab test. Also positive for a celiac gene.

Could I still have celiac? or maybe just gluten intolerance?

I know that celiac can, but can gluten intolerance(not actual celiac) cause anemia in an otherwise healthy person?

Can it also cause other problems like osteoporosis?

[ShayFL]

Either Celiac or Gluten Intolerance can cause deficiencies.

Blood tests are notoriously inaccurate. And biopsy is too because damage can be "patchy" and if they do not take a sample from a damaged spot, it will look negative.

Having a family history and a celiac gene doesnt mean you have celiac. But if you have symptoms and a pos. with Enterolab, then I suggest trying the gluten-free diet.

The best way to know is by trying the diet. If you eliminate gluten and your symptoms improve or go away, then you have your Dx.

[tiredandsick]

Either Celiac or Gluten Intolerance can cause deficiencies.

Blood tests are notoriously inaccurate. And biopsy is too because damage can be "patchy" and if they do not take a sample from a damaged spot, it will look negative.

Having a family history and a celiac gene doesnt mean you have celiac. But if you have symptoms and a pos. with Enterolab, then I suggest trying the gluten-free diet.

The best way to know is by trying the diet. If you eliminate gluten and your symptoms improve or go away, then you have your Dx.

Thanks for your response, it really helps to be able to hear from other people about this. But the if the diet works, its still not an actual Dx. It might be enough to make somebody feel better, which is the most important thing I believe. But, this is something that I have noticed is not talked much about on these forums from what I have read. There are things like that pill for example. I have read that they are trying to develop a pill for people with celiac. I would assume that it would only be available to people with an actual Dx. And things like being able to write a portion of your food off on your taxes. There are other things I am sure that would be a benefit of having an Dx. These are just some things that I have wondered about. I am sure there are advantages to having no Dx as well, like maybe easier to get insurance, but I am not sure. I am just a little hesitant about going gluten free, because then I can't really get any more tests done from what I understand.

[Lisa]

You obviously have been going some reading. That's a good thing.

There are three ways to diagnose Celiac Disease; 1) blood test which I will list below, 2) endoscopy/biopsy and 3) dietary response. The first two can can inaccurate.

Many people here are self diagnosed and have chosen the diet. They are quite comfortable with their decision. The relief of pain and illness is reason enough to continue.

Try the diet for a couple of weeks and perhaps you may have your answer. You can always return to gluten for further testing.

HERE is the full blood work for testing:

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