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A Little Confused

hungrygirl

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hungrygirl Newbie
hungrygirl
Posted

Hi everyone,

I hope you can give me some advice.

I was diagnosed with Celiac last year, kind of by mistake. I was sick from something else, and when the doctors were trying to find out what was going on, they discovered a slight reaction to gliadin.

I had the celiac panel done and an endoscopy..they were both my choice, as I was told to try gluten free and see if it made a difference.

Before this I had no issues with food whatsoever. I didn't get pain, I didn't have any trouble eating anything at all. I was

completely surprised.

My blood test showed positive, but only barely, the numbers were just over the cut off ranges.

My biopsy was negative and my doctor took multiple pieces.

I was later diagnosed with lyme disease and I think whatever problems I was having were due to that.

I've been gluten free but haven't noticed any difference that could tell me that I had had some problems from it before.

I've even been lazy about being careful and eaten things that I shouldn't and had no reaction at all.

My GI doctor recently told me that I may be latent celiac and I could try eating gluten and she would continue to

test me and see if anything shows up.

I've been told to stay away from so many foods, which I did, but now when I try them I have no problems at all.

Could it be that I may not have celiac, but could develop it?

I want to try and eat some but I'm scared after all I've read on line.

Being gluten free has made no difference to me as far as I can tell.

If I felt better I wouldn't be questioning it.

What do you all think?

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Tallforagirl Rookie
Tallforagirl
Posted
Hi everyone,

I hope you can give me some advice.

I was diagnosed with Celiac last year, kind of by mistake. I was sick from something else, and when the doctors were trying to find out what was going on, they discovered a slight reaction to gliadin.

I had the celiac panel done and an endoscopy..they were both my choice, as I was told to try gluten free and see if it made a difference.

Before this I had no issues with food whatsoever. I didn't get pain, I didn't have any trouble eating anything at all. I was

completely surprised.

My blood test showed positive, but only barely, the numbers were just over the cut off ranges.

My biopsy was negative and my doctor took multiple pieces.

Which tests did you have exactly? The anti-endomysial antibody test (EMA) is very specific for celiac disease, almost 100 per cent. The tTG (tissue transglutaminase) is the next most specific but can be false-positive if other autoimmune disease is present. Anti-gliadin tests are much less specific and are falling out of favour for diagnosis of celiac disease.

If you had a positive EMA it could be that the biopsy was misread. You could ask for it to be re-examined by a specialist.

If you were diagnosed on the basis of a positive anti-gliadin test alone, and have no symptoms, it could be a false positive, but if you're going back on gluten you may want to retest in a couple of years just to be on safe side.

When I was first tested for celiac disease the blood tests were positive (don't have numbers) but biopsy negative. I stayed on gluten and I went on to develop "full blown" celiac disease with all tests positive, including an EMA.

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