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Test Results-help


amymm

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amymm Newbie

I got my test results from Prometheus labs. They are at the fore-front of Celiac testing. At least Celiac testing that is viewed as credible by doctors.

I tested negative on every test. However, they automatically test for the HLA DQ genes if you test negative. I tested positive for the DQ2 gene, but negative for the DQ8 gene.

What do you think? The test result stated that this doesn't eliminate at diagnosis of celiac. Should I go see another GI doctor? I had an endoscopy 2 1/2 years ago that show "mild plasma cell infiltrate of the lamina propia"-this could be the beginning of celiac. Of course with the negative test results-the doctor said it wasn't celiac. So I'm wondering if I should pursue another endoscopy.

Thanks for your input.

Amy, San Jose


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WGibs Apprentice

I'm assuming you have some digestive or other symptoms that make you suspect celiac. Have you tried the gluten-free diet to see if it helps? You could have non-celiac gluten intolerance or sensitivity. The solution would be the same -- the gluten-free diet. Trying the diet is the easiest, and in some ways most meaningful, diagnostic tool. If you respond positively, then you have a solution to your problems, if not an official label from a doctor.

Just a word of warning: going gluten-free will skew subsequent test results, so you would have to go back on gluten if you really wanted more testing. I know alot of people only want to go gluten-free if they have an official diagnosis. Some docs will make a diagnosis based on positive dietary response, but many will not. For me, the important thing was finding a way to feel better. Going gluten-free did that for me, and it doesn't bother me too much that I don't have an official dx. Every time I have accidentally have gluten, I get major D and get patches of itchy red bumps. If I stay gluten-free, none of that happens. I consider that a virtual diagnosis.

amymm Newbie
I'm assuming you have some digestive or other symptoms that make you suspect celiac. Have you tried the gluten-free diet to see if it helps? You could have non-celiac gluten intolerance or sensitivity. The solution would be the same -- the gluten-free diet. Trying the diet is the easiest, and in some ways most meaningful, diagnostic tool. If you respond positively, then you have a solution to your problems, if not an official label from a doctor.

Just a word of warning: going gluten-free will skew subsequent test results, so you would have to go back on gluten if you really wanted more testing. I know alot of people only want to go gluten-free if they have an official diagnosis. Some docs will make a diagnosis based on positive dietary response, but many will not. For me, the important thing was finding a way to feel better. Going gluten-free did that for me, and it doesn't bother me too much that I don't have an official dx. Every time I have accidentally have gluten, I get major D and get patches of itchy red bumps. If I stay gluten-free, none of that happens. I consider that a virtual diagnosis.

I have symptoms galore, including GI symptoms. Have had them since the birth of my 2nd child in 2000. I know I can gluten-free on my own. I want to be taken seriously-as far as I can expect the medical establishment to do so, before I take matters into my own hands.

I'm also just looking for people who have experience with the gene testing and how seriously doctors take those test results.

Thanks for the feedback.

Amy, San Jose

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