Lupus and Celiac

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Regular Member

Date Joined Oct 2009
Total Posts : 111
   Posted 4/30/2011 11:38 PM (GMT -6)   
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

Veteran Member

Date Joined Jun 2008
Total Posts : 675
   Posted 5/2/2011 10:17 PM (GMT -6)   
Hi Jesimae -
I have Celiac and UCTD (undifferentiated connective tissue disease), with overlap symptoms and bloodtests.  The Celiac diagnosis came after UCTD, which came after Fibromyalgia.  The gluten free diet has helped lessen a few things - but I never had the classic GI/bowel symptoms.    
Testing positive on an ANA test is not conclusive -  for Lupus or any AI disorder.  It is only one element to be considered.  You can have Lupus with a negative ANA and not have Lupus with a positive ANA.  And yes, the ANA can go from positive to negative and back to positive.   Once I started Plaquenil and got on the Gluten Free diet, my ANA dropped considerably and once was even negative before going back up again, but never to the higher level it was before treatment.  CRP has also come down. 
If you feel you are having increased symptoms, and/or were not satisfied with the first rheumies conclusions, I would get a second opinion.  Take pictures of your rash, get records indicating proteinuria, etc. and keep track of your symptoms to help with diagnosis. 
Also - it can take up to 2-3 years on a Gluten Free diet before healing and normalizing of the small intestine are complete.  It's important to be vigilant and also to make sure you are getting the appropriate supplements to counter the malabsorption issue that is so common with Celiac.  You didn't say how long you've been following  the diet - but your symptoms may yet improve given more time and complete adherence.   Good luck!  
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