Posted 5/29/2014 10:50 PM (GMT -6)
I'm glad you were able to get in and see the doctor today. I'm glad that she ordered the test you wanted done, I'm sure you were very disappointed that you didn't get an answer today though.
She's looking at least and didn't blow you off, like some of them do. I looked at your photos too and I have to say I'm not 100% positive it's a lupus rash either. I've had lupus for 26 years now and I'm like her I'm not convinced it's lupus. However, lupus is the disease of 1,000 faces and is SO hard to DX, so please don't get to bummed over it okay. There are other autoimmune issues that may fit you, she'll keep looking to make sure you get the right care.
I think her thinking you do not have celiac is a good thing, I know it's frustrating not knowing what you do have though. The advice to see another GI sounds good too. The fact you're hyper-mobile caught my attention, my daughter has the same condition and she has had a positive ANA of 1:640 and has had since she was like 7, she's now 21. She does fuss a lot about her joints hurting, and can get a rash here and there. However, she's still not been DX'd with lupus.
Well, I wanted to wish you well with this Doctor and encourage you to keep on looking, don't give up. Good luck with your dermatologist appointment. I would suggest that you stop trying to make yourself flare, you really could get yourself in one and then not get out of it. I've been flaring continually for almost 3 years now, NO FUN AT ALL.
Let us know how the dermatologist appointment goes and hang in there Maddie someone is going to figure this out for you.
DX- RA, Lupus, Fibro, LGL Leukemia, Obstructive & Central Sleep Apnea, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.