I had my quarterly visit today with the rheumatologist, who's getting a little frustrated because I'm what he called a "diagnostic puzzle." (I interrupted his conversation with his resident to say I'd call myself a "diagnostic nightmare." :)
He still has no answers. He wasn't impressed with my latest ANA results, which were 29, up from 19 (considered a low positive) last year. My internist felt it was significant as my "body declaring itself" to definitely have an autoimmune disease. The rheumatologist told me to tell her to stop running that test on me. :)
So we discussed all my recent blood tests, particularly the Vitamin D deficiency that's not improving significantly despite four months on a megadose of 50,000 IU per week. (A few weeks ago, my internist raised the dose to 50,000 IU once every five days, which is an annoying pattern to remember.) Also, my ferritin levels, which are my iron stores, are deficient and dropping every time I'm tested despite my taking iron supplements. (I recently doubled my dose of supplements, and my internist says if my ferritin levels don't begin to improve, she's going to send me to the hemotologist again and recommend IV iron. And I'd definitely prefer to avoid that.)
So, the rheumy says that with such a bad Vitamin D deficiency and unexplained iron deficiency (although I'm not anemic -- my red blood count is fine, as is my hemoglobin, although both are on the low end of normal) that perhaps it's time to test me for what he calls the trendy disease of our decade -- Celiac Disease. Apparently, 20 percent of people with celiac disease have joint pain like mine, and it could explain the iron and Vitamin D deficiencies, fatigue, etc.
Also, he said something to the resident about my MCV catching his attention previously, although he didn't explain to me what was unusual about it. If, like me, you have no idea what MCV is, here's the LabTestsOnline explanation:
Mean corpuscular volume (MCV) is a measurement of the average size of your RBCs. The MCV is elevated when your RBCs are larger than normal (macrocytic), for example in anemia caused by vitamin B12 deficiency. When the MCV is decreased, your RBCs are smaller than normal (microcytic) as is seen in iron deficiency anemia or thalassemias.
So I got tested today for Celiac Disease. The rheumy says it's highly unlikely -- in the past five years, he's had many, many people come to him having self-diagnosed Celiac Disease but he's had only one patient actually test positive for it. And I told him I sure hoped he was right because I love bread and there's gluten in almost everything in my diet other than fresh fruit, veggies and meat. I do not want the complication of having to go gluten-free.
But I'm happy to have the test run. What's another needle stick at this point? And it would be nice to tell the well-meaning folks who tell me that a gluten-free diet can cure anything that I've been checked out for it and really don't need to add that complication to my life. :) (And yes, I have had a surprising -- to me, at least -- number of people tell me that going gluten-free and dairy-free would absolutely cure me of whatever ails me. Of course, none of them have medical degrees or any other types of credentials other than being gluten-free and dairy-free themselves without having bothered with testing for Celiac Disease first.)
So I'll call next week to get the test results, and fully expect to hear that they came back normal. (I guess there's two tests to run for Celiac Disease and they ran both of them.)
And other than that, the rheumy says to just keep doing what I'm doing, treating symptoms and muddling through, and he believes eventually whatever my health problem is will prove itself. In the meantime, he insists that there's no benefit to a label, particularly since the easy ones he could give me -- fibromyalgia and chronic fatigue syndrome -- sometimes carry negative biases (in his opinion).
(Laurie Edwards of A Chronic Dose just happens to have blogged about labels and other semantics of the patient experience earlier this week. I encourage you to check out her post from Sept. 16. I'd give you a direct link to it, but for some reason I'm having trouble getting it. But do go read it! You don't have to scroll down very far to find it and it's worth the trouble, I promise.)
9 months ago