Antiphospholipid Syndrome now includes EM!

Hello all, my name is Jen. I was luckily diagnosed with the rare disease Antiphospholipid Syndrome in 1992 at 17. I say luckily, because I had several years of issues following the diagnosis, and it was all linked by this super smart neurologist to whom I no longer have access. I’ve been fortunate to have a teaching hospital with a string of amazing internists who found me interesting as I battled a non-functioning thyroid, an extensive DVT, three second trimester disasters, Raynauds, and unceasing migraines. Seven years ago, I went gluten free. Immediately, the 20 year migraines ceased. My thyroid fixed itself after three years. My blood pressure went down. I came off all of my handsful of nightly meds except warfarin for the clotting. I was debating trying another pregnancy even though I almost died three times… I felt everything was different, and my body felt almost normal.

Then in January, I was having my twice-yearly pedicure, and the tech was sawing my little toe off, it seemed! Well, that was the very beginning of my EM. It has spread, from my right foot to my left hand, back and forth. I had to research and figure out what it was (seriously only one thing it could be), and I told my amazing doctor, who agreed with my evaluation… then told me she was retiring. My new doc doesn’t know me yet, doesn’t know that I’m smart enough to figure out what seemingly random symptoms indicate, doesn’t know about my incredible pain tolerance, and that if I’M crying about pain, a normal (non-autoimmune) person would be incapacitated. He put me on gabapentin 400mg, and the side effects have kicked my butt so far. I have to be alert and drive and talk to people in my job. As the sole breadwinner right now, I can’t be non-functional, so I’m looking for more natural ways to manage the situation. I got a temporary handicapped placard because I can barely walk when it flares, and it flares randomly quite a lot. I currently use Tylenol and CBD when I have a flare, and it helps some. I keep thinking that if hidden Celiac caused all of those problems before, there has to be something that is triggering this that I haven’t figured out. It’s maddening, and at times, feels hopeless, but I’ve been through crazy rare disease issues before, so I know to keep up the fight… sigh. Really thought I was done fighting! Anywho, thanks for reading, I’m looking forward to reading about all of you as well!

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If you had undiagnosed Celiac for an extended period, you may have ended up with a nutritional deficiency due to malabsorption. Deficiency of some vitamins (especially B12, B6 and E), and metals (especially copper) are well known to cause peripheral neuropathy. Erythromelalgia can be a consequence of peripheral neuropathy. Unfortunately, peripheral neuropathy is irreversible at this time.

EDIT: Celiac may cause peripheral neuropathy for other reasons also. For instance, it has been suggested that some of the antigens targeted in celiac disease (i.e. gliadin and tissue transglutaminase) have structural similarities to some of the proteins expressed in the nervous system. Therefore, it has been speculated that the autoimmunity in celiac disease could target intestinal cells and nervous system simultaneously.

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