Which autoimmune disease?

Posted by streetmeliss (Melissa) @streetmeliss, Nov 4, 2023

I am struggling to be diagnosed. Labs are normal so far. My symptoms are uveitis, multiple tendinitis, joint pain, hand swelling and stiffness at night, general unwell feeling that will come and go, aching thigh pain, recurrent yeast infections, chelitis, mouth ulcers, Gastritis. Getting discouraged. No skin rashes.

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Have you been tested for celiac disease? It can cause a wide range of symptoms, including most (maybe all) of those symptoms you listed. CD is much more known about than it was back when I was diagnosed, so it’s likely you’ve heard about it and your doctors are aware of it. But if not, CD is basically an intolerance to gluten which damages your intestines so that they can’t absorb nutrients. Without those nutrients, any and every part of your body can be affected. Because the symptoms vary so widely between patients, it’s difficult to get a diagnosis. Doctors used to only look for digestive tract issues as being symptoms for celiac disease. And that probably is the most common complaint, but by far, not the only one ( and the medical community has finally figured that out). And some people don’t even have that YET, although they most likely will as the disease progresses. Since gastritis was among your list of symptoms, if you haven’t been tested, it’s worth a shot. CD is very common in America. It’s been a long time since I was diagnosed, so I might not be up on the latest technology. But it can be diagnosed with a blood test, a mouth swab DNA test, or an endoscopic biopsy, in which they look for flattened/damaged celia.

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I just found out they think some celiac is non-gluten. Maybe that is what you are dealing with. I did google it and found it on google and Google scholar. So I think they are doing research.

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Hi
You can have "normal" labs and still have (seronegative) autoimmune disease. Its more common then you think.

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Hi streetmeliss,

Langold is correct. I am in the group he alludes to.

Before I had a specific diagnosis, one of my doctors gave me some comfort. He said that it's okay to be in the UNspecific diagnosis stage, as long as I was getting treatment from a doctor who was watching and evaluating, etc.
Apparently, there still are a lot of unknowns with autoimmune disease. But a lot of the treatments for different diseases overlap, so there is room for different diagnosis or for an unspecific one. I hope that makes sense. I found it very comforting. My most important doctor is my rheumatologist.

I read somewhere that a good approach for the undiagnosed patient is to
1. You decide which set of your symptoms are the most obvious/ the worst for your body.
2. Go to see the kind of doctor who treats that set of symptoms.
For me, it is joint and spine pain, so I go to the rheumatologist.
3. When you first see that doctor, give as much information as you can about your symptoms related to their specialty. Also you should mention the other symptoms, but not spend a lot of time on them unless that doctor asks follow up questions.
My rheumatologist recommended my gastroenterologist and dermatologist, and my rheumy now always asks about my guts and skin and if I've been keeping my appointments with those doctors.

I did not use this approach myself. I heard about it afterwards, but it seems like a good method to me.

It is not easy to be in the un-diagnosed / unspecific diagnosis stage. That is an understatement. "It stinks!" is more accurate, right?

This post got long...sorry about that. Hope it has been helpful to you.
Peace and hugs

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