Kathie, What celiac antibody tests did they run? Do you know that they stopped running one of them, the Reticulin Antibody? I was positive to that one. The biopsy for people with Reticulin isn't always positive. Like MG, there's no perfect algorithm for figuring CD out.
Would you mind describing your rashes? Do they happen in a predictable way? Are they there all of the time? When you had the skin biopsy, was it a punch biopsy? There are dermatologists who are more equipped to do specialized biopsies than others. Usually they're at universities. Also, it could be food allergies too. There are a lot of reasons for rashes.
I had a couple of punch biopsies because I get a rash whenever I'm exposed to UV's. It doesn't look like lupus but they can't say for sure what it IS. So I just stay out of the sun.
Did the rheumatologist actually run any blood tests to come to his conclusions?
Did they run any lupus specific antibody tests?
Have you had your B12 checked? If you're having GI tract issues, it's important for someone (gastroenterologist) to figure out what part of the GI tract is the issue.
MG is a clinical diagnosis, backed up with tests. A negative test doesn't prove anything! Negatives don't prove positives.
So a smart, MG expert would know that they would have to do other tests like a SFEMG or a Tensilon Test.
Have you tried taking gluten out of your diet for a few weeks to see if it helps the GI issues? If you have CD and have had it for awhile, it can take awhile to clear up any GI issues. People with CD have low albumin, B12, Vitamin D, iron, calcium, etc.
If your legs get much worse, you won't need a walker but a trip to the ER! Waiting is not a good thing if you have MG. Please take very good care of yourself. Since you have swallowing issues, some people actually make a tape recording of a message in case they need to dial 911 but can't speak. I hope that won't happen. If you live alone, it's a smart precaution to take.
Hang in there. I have been down so many doctoring roads that I totally appreciate what you're going through.
Annie
Possible causes of a low CPK.
http://www.ncbi.nlm.nih.gov/pubmed/7288967
http://www.clinchem.org/content/44/5/905.full
http://www.clinlabnavigator.com/creatine-kinase-ck.html