Celiac & RA ... ??

[heyitsmissa 3]

Back story: We thought I had lupus, so I saw a rheumatologist. He put me on a trial of Plaquenil to see if it helped with various symptoms. During the trial, we found out about the Celiac, and figured everything was likely attributed to that. The rheumatologist DID diagnose Undifferentiated Connective Tissue Disease, which is basically a catch-all for the rheumatic world. ("It appears something autoimmune is going on, but your blood work and symptoms are so diverse, we can't pinpoint exactly which autoimmune disease it is.")

Followed up with the rheumy after being diagnosed with Celiac and having done 3 months on the plaquenil. He said that it seemed everything was consistent with celiac, and we should see how the gluten-free treats my body. Fast forward 2 weeks - suddenly I am having severe thumb pain in the MP joint mostly, but it can radiate down to the CMC joint as well as into my wrist. (BOTH thumbs) I've had x-rays done as of this morning, and the bones of the MP joint are touching each other in my left thumb. My right one appears normal, though it has hurt for many years and it swells more, flares up more, etc. My left one didn't EVER hurt until literally last night before my ortho appointment this morning, but it was quite severe. Like, scream-out-and-make-your-husband-jump severe. 

So I'm asking these questions-- 

1. Could going off of the plaquenil have caused the sudden flare in severe pain, swelling, and lack of mobility in these joints? 

2. My blood work doesn't support rheumatoid arthritis other than a positive ANA, but could this be early arthritis? The loss of joint space makes it seem like it could be arthritis, but apparently celiac can cause this too?!

I'm just confused and frustrated and I want my thumbs back. They hurt, are weak, and stiff. The orthopedist was useless for them. He just wanted to refer me to a rheumatologist and I was like, "yeah, I have one of those." So he encouraged me to go back. I've messaged my rheumy through a patient portal for his insight as well. Just trying to avoid copays like the devil. I have a disk of the images, so that's covered. Yay. Help. 

[Irene Joanne 13]

Any chance it's lupus and celiac? I have celiac but also a lot of lupus symptoms.... 

[heyitsmissa 3]

Well, after further evaluation of my blood work, my rheumatologist didn't even run the RA tests. SO, that's going to have to be done ASAP. 

Might could be lupus, but RA is standing out big time based on symptoms. All my joint issues are symmetrical, and I do have an x-ray confirming loss of joint space. But can't lupus cause arthritis as well? 

I really hope I don't have celiac, lupus, RA, narcolepsy, hypoglycemia, AND asthma. I was hoping Celiac was the big connector. Turns out it can cause these extra problems when left untreated. YAY! :/ 

im just so tired of finding an answer, only to uncover another problem. That's been my life for 5 years. And it's getting very frustrating. 

[cyclinglady 1,592]

I am only going to address the celiac issue.  It has only been two months or so since your celiac diagnosis.  I can take YEARS to feel better and that is based on member input here.  In theory, recovering from celiac disease should be quick, but this is the ONLY medical condition that the patient is supposed to manage on his/her own.   The gluten free diet has a huge learning curve!  Frankly, there is not even enough known by the medical community about how we heal.  Dr. Fansano's team discovery of Zonulin (gate keeper for intestinal permability) is just the tip of the iceberg.  Here is a video about it:

 

The best we can do is research, adhere to the gluten-free diet and hope that science catches up soon.  Remember too, that many of us have more than one autoimmune disorder.  Healing from celiac disease may help other AI issues.  

Hang in there!  ?

Edited March 12, 2016 by cyclinglady
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