Been posting on this forum on and off for 2 years. Been playing the diagnosis game. Had some symptoms for 10 years, but couldn't get a doc to connect them. Finally, after I lost 50 lbs in 6 months without trying and began to have seizures, a doc took me seriously.
To make a long story short, I was diagnosed with Celiac disease. And boy, are my markers high! However, I still have some symptoms that don't seem to be affected by my gluten free diet-joint pain, weakness, malar rash, little red spots appearing all over my body now, hair loss, still losing weight, recurring kidney infections, 4+ protein in my urine, strong reactions to sunlight (skin like raw hamburger meat), etc.
I tested positive for lupus on the ANA twice, but was told I did not have Lupus by a rheumatologist. Of course this was before my celiac diagnosis. Now I've read that statistically a celiac will be diagnosed with, on average, 7 AI's in their lifetime!!!! So this is making me rethink the whole "You don't have lupus" thing.
Wondering how many of you are both celiac and Lupies, and which diagnosis came first?
Also, can you have Lupus and have positive AND negative ANA's??? Once you test positive because of lupus, can you then test negative?
I work with a girl who has lupus and we've been talking about our AI diseases. She swears I have lupus (my "spots" look just like hers, proteinuria like her, kidney infections and joint pain like her, she's seen my "malar rash"...) Also compelling is that when I've taken steroids to clear up my "hamburger meat", all my symptoms get better, or go away completely for a while.
Not sure what to do. Just want some relief.
Jessica, diagnosis: Epilepsy
MVP, IBS, Clinical Depression, Anxiety
Celexa, Propranolol, Meclizine, Zofran, Prilosec, Depakote