Tests Results Are In.....

[roxieb73]

Blood tests..... Negative

Gene tests..... Double HLA DQ1 Subtypes (5,6)

Vitamin panels...... low in B-12,Iron,Folic Acid,low normal Mag, Severe Vitamin D deficiency

Leg biopsy....... Inconclusive could be DH, could be Lichen Planus but wouldn't commit to either. (both autoimmune Gluten reactions) Final diagnosis... Fibrosis, with T-cell changes. (I don't have the report with me so I am just trying to remember)

Endoscopy....... Hiatal Hernia otherwise normal biospsy... negative

Gluten free one week and already feeling better. Walking is a bit easier (still can't walk to car without pain but at least I can now get half way)

I will be staying gluten free just wish I had more concrete evideince as to why I am doing this.

Thoughts anyone?????????

Roxie

[nora-n]

I ahve double DQ1 too, and usually we test negative on blood tests.

But I have DH too (no diagnosis) and that does not need DQ2 or 8.

The antibodies for DH are ttg-3, and for gluten ataxia are ttg-6 (there are tests for those but I have never heard of any one getting them)

[roxieb73]

I ahve double DQ1 too, and usually we test negative on blood tests.

But I have DH too (no diagnosis) and that does not need DQ2 or 8.

The antibodies for DH are ttg-3, and for gluten ataxia are ttg-6 (there are tests for those but I have never heard of any one getting them)

Oh wow was just reading your info in your signature. My rash on my leg is almost 3 months old. No wonder they couldn't diagnose it. Grrr Oh well. I guess it really doesn't matter. They did confirm that it is a gluten related rash. That comfirmed it for me. Especially after all the info I have gotten here on being double DQ1. All I need to know is my symptoms are starting to get better and that is enough for me.

You seem to be the go to person to interpret test results and that has been a huge help for me. Thank you Nora!