Hi,
I’ve had EM for a few years now, but luckily my symptoms are mild and my flares are very infrequent. Recently, after having some blood tests for some digestive issues I was having, my doctor sent me to a hematologist because my white blood cell count was low. The digestive issues have cleared up, though I occasionally still have some mild issues that I think are unrelated.
The hematologist thinks that the count was probably just low due to an infection, which seems right to me. While I was there, I brought a picture of my flaring feet so I could show him when he asked about preexisting conditions and mentioned that it’s sometimes secondary to other things, but that I didn’t have symptoms of anything else.
I have IgA deficiency and a family history of lupus, though I don’t know most of my history because I’m adopted. He’s going to test me for ANA, RF and several inflammatory markers “just in case” because of my family history and the IgA. I don’t have symptoms of anything else right now, but I’ a little nervous, as I tend towards the anxious side. Is it common to check for these things just in case? What will it mean if my inflammatory markers are high but I have no symptoms? I know some people with EM have it secondary to autoimmune diseases, so I thought this would be the best place to ask. Thanks!
Meredith
Hi Meredith, I think it is quite common to check for all of these conditions when something isn’t working right and they always want to check for lupus and inflammatory markers when people have “unexplained rashes”. As for knowing if any particular inflammatory marker is elevated, if this is the case they might prescribe something to help decrease inflammation. Inflammation is generally very hard on the body and can wreak all sorts of havoc on blood vessels and other organs. Since you have altered igA antibodies are they testing you for celiac? It can certainly cause inflammation and GI tract difficulties.
I’ve been to about 100 different doctors personally to try to figure out what is going on with me, and each and every time they want to check my ANA, RF, CRP, ESR and a ton of other things as well. I’ve tested negative for the autoimmune stuff every time but each new dr wants to run them. So I wouldn’t be too concerned about that in and of itself. And if they do find something and it is treatable, I think that would be great. I would ensure they are also getting baseline vitamins d & b12 levels as well as testing for homocysteine levels. There is often an association between deficient (or surplus) b vitamins and neuropathies and there is great emerging data on vitamin d and various conditions.
All in all I think getting numbers is just that - is a great tool to help figure out and hopefully treat whatever is going on.
Good luck!
~Linda
Thanks, Linda! I know they’re checking by B12, but I don’t think they’re checking my D. I take D3, so I should be okay unless I’m not absorbing it, which could be possible if I had celiac, I guess. My digestive issues have calmed down. They’re not checking for celiac because the test is unreliable in people with IgA deficiency (since they look for elevated IgA).
The flip side of that is that people with IgA deficiency are more likely to have it. I’ve read that there are surrogate markers, but I don’t know what they are or how reliable they are. They could also do a biopsy or a scope, but all that seems unnecessary since my digestive problems have eased up. I’ve considered giving up gluten for a while to see if it makes me feel any different, but I don’t want to be one of those people who are like, “OMG Celiac!” without any real symtoms or proof. (There’s a risk of missing out on nutrients by going gluten free if you don’t plan well, and them there’s a chance you may not even have it.)
Anyhow, I take the tests on Friday, so I’ll just wait a couple weeks to see what happens. If the inflammatory markers are high, I’ll ask the doc about going gluten free. I feel fine rigt now except for the occasional EM flare, and mine aren’t frequent or too painful.
I’m sorry you’ve struggled with getting a diagnosis, and hope you feel as good as you can and that everything works out for you.
Meredith