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Neuropathy | Last Active: Oct 30 7:31pm | Replies (17)
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Replies to "I was diagnosed with small fiber neuropathy. My neurologist said either my celiac disease or the..."
Thanks, @lisa53 - seems we've been on a similar path.
I stopped gluten/dairy and many other food groups years ago, not even knowing my GI symptoms were also CVID-related. My migraines have thankfully stopped, but the SFN still continues - and, it's progressing. (I've had it for over 15+ years now.) I was tested for celiac and it was negative. I've had a lot of genetic testing done lately and nothing about celiac disease.
My docs were able to get approval for a higher dose of IVIG, but still only about half of what Dr. Oaklander recommended. I was on it for about a year. Not sure I noticed much difference. I'm at the point where I might go back on it, to see if there's any improvement.
Hoping more research comes about with the CVID condition as it seems there are many non-infectious symptoms that accompany it.
Thanks again for joining the conversation.