When I had to see a gastroenterologist at one point, he was concerned about both my neuropathy and my very low ferratin levels. He said "silent celiac" can cause both symptoms, and ran a blood test. It was negative.
I did a whole exome test in December, and just got my results back a couple of weeks ago. I'm still sifting through them, but have already found one significant variant I didn't previously know about. My levels of biotinidase run half-normal levels which doesn't seem to cause much concern based on what I've read, but I will be sure to supplement for the rest of my life.
I've had this SFN for 3 1/2 years, and am not giving up. Right now I'm pursuing it from a metabolic/intestinal angle. I tore up my gastric system with iron supplements in August of 2013, and immediately developed a neuro problem. Those symptoms subsided after about a month, but two months later, the SFN set in. Even though no doctor believes there's a connection, I can't get by the coincidence.
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Originally Posted by Summerfun
I can understand. I had mixed emotions when I got the negative results for SCN9a. Felt like I was back to square one and it is all so time consuming. I don't think there is much they can do for hereditary causes so maybe it is a blessing in disguise.
I was just reading about SFN and celiac disease. Often it is the presenting symptom for celiac. Have you been tested for that? I had a saliva test for gliadin which came back negative but I don't know if that is sufficient to rule out CD. I will ask during my appointment in May.
We must continue to march forward!
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