Negative Gene Test

[des1713]

My Prometheus Celiac Gene test recently came back negative. One year earlier I had a negative blood test but a questionable biopsy that showed an elevated T cell count but no villi damage so I was put on a gluten-free diet based on the biopsy. I just had my one year follow up biopsy that showed T cells in normal range...basically a healthy small intestine. So here is my frustration:

Based on the negative gene test my Dr was initially saying I could go off the diet since I do not have celiac disease. Now that the biopsy is back he says he is very pleased with the results and attributes the improvement to the gluten-free diet and says to stay on the diet even though the gene test is negative.

My symptoms had mainly been bloating after eating and constipation. I was having some bleeding and acute reflux at the time I sought treatment. The gastro I went to was coincidentally a celiac specialist. After a year of adhering to the gluten free diet I have seen some moderate improvement of GI symptoms but I also have had new symptoms that came on after I went on the gluten-free diet like hair loss, weakness and fatigue associated with orthostatic hypotension (on medication for that).

Basically I am very confused. I feel like this is such a dramatic lifestyle change for something that I feel is not 100% certain. It would be one thing if I felt great...the dr. says give the gluten-free diet more time and maybe the other symptoms may improve. Obviously I am not being "glutened" from a secret source or the biopsy would not be so good. We've run tons of other blood tests for other autoimmune stuff, all normal...

[KaitiUSA]

Stay on the diet. Even though you do not have a main celiac gene, you at least have a gluten intolerance which can turn into celiac if the diet is ignored even without a celiac gene. Gluten has obviously caused damage so stick to the diet.

[hez]

First, let me state that I am by no means an expert! I know from my own experience that it is taking a long time to feel better (four months out on gluten-free diet, only small improvement). However, there was no question I had celiac. If the doc thinks your better off on the diet keep it up. Time will tell if your other symptoms improve. If they do not, go back and see if there is a secondary issue that has not been considered. You have come this far on the diet, try giving yourself more time.