beave said...
Hi aqualung,
I just saw your posts.
Is Dr. Patay your primary care doctor?
Did he refer you to the rheumatologist Dr. Brion based on your positive ANA blood test?
Did he also refer you to Dr. Coyle? Dr. Coyle's blood tests rule out Celiac disease, but they can't and don't rule out the possibility of IBD.
None of these tests are used to indicate IBD. There are other blood tests that, if positive, *might* indicate IBD, but the primary method of diagnosis is colonoscopy with biopsy, plus symptoms, plus recurrence over time, plus ruling out infections and other possibilities. The fact that you've had multiple perianal abscesses, plus the presence of blood in your stool, raises red flags of a possible IBD being present. I'd strongly recommend you follow up with Dr. Coyle and get the colonoscopy. Before the colonoscopy, you could ask for stool tests for infection, for the presence of blood, and for what is called fecal calprotectin. Those can tell about what's going on in the colon before the colonoscopy is done, or even if it's really needed (if blood is present and fecal calprotectin is high, then it's definitely needed). And you'll impress Dr. Coyle if you ask about fecal calprotectin!
The high positive ANA with homogeneous pattern indicates a likely autoimmune disease separate from a possibility of IBD. There are several more blood tests that the rheumatologist should have ordered, to try to find out if they indicate a specific type of autoimmune disease. I see that the rheumatologist ordered a couple of such tests (anti DSDNA and anti Sjogren's), but he should have ordered others as well. As dcd2103 wrote, you may have what's called Undifferentiated Connective Tissue Disease, but you need more blood tests done by a rheumatologist to rule out other autoimmune diseases in the same family before deciding that's what you likely have. The rheumy should have done more.
So I'd recommend following up with Dr. Coyle and getting further testing.
And then I'd recommend getting a second opinion from another rheumatologist, or at the very least asking your primary care doctor to run further blood tests to try to determine what type of autoimmune disease you're dealing with. These include anti-Smith antibodies, anti-RNP, rheumatoid factor antibodies, etc. A good rheumatologist should run then all, if only to see they're negative and to rule out as many things as possible.
Here is some info:
https://www.the-rheumatologist.org/article/know-your-labs/2/
For what it's worth, I'm also in San Diego. I have IBD and Undifferentiated Connective Tissue Disease. Diagnosis for each one took *decades,* not just years.
Good luck and keep us updated.
Beave.... you're frightening me lol. How do you know all this information? Of all the Dr's in San Diego you hit 3 of mine....
Exactly right, Patay is my primary Dr.
Dr Tal David who did my shoulder surgeries is the one who referred me to Dr. Brion, whom I have seen 2 times now.
I found Coyle on my own actually by looking at Scripps stuff. I had a virtual visit with him, liked the guy. Scheduled a colonoscopy with him.
In the interim I had seen Dr. Schultzel (colorectal) for the perianal abscess treatments. He specifically recommended that I NOT do the colonoscopy with Coyle. He said Coyle is fine for celiac but does not specialize in IBD. He recommended his partner Dr. Mazer Ally.
I'm confused and tired.
But also.... how did you know all this Beave? Must be a mind reader haha.