Over the past 10 weeks I had four transfusions of iron to bring my hemoglobin level up from paltry 9.4 to low-normal 12.3. Actually, the 4th transfusion happened on the day that my numbers came back in the 12's, so hopefully I'm holding at even better numbers. So my big question was: If I've been as strict on the GF diet as I think I have, why is my anemia still here? My hemotologist said I needed to talk to the GI people to explore it. So, between my first and second visit to the hemotologist, I talked to my care providers at Jefferson's Celiac Center and came up with a plan to do additional blood tests to see how my folate and B12 levels were doing, since I was deficient in both when I was first diagnosed and since they are absorbed in the same part of the small intestine as iron. We also decided to re-test for the antibodies that are present in active celiac disease.
I had a couple of theories about my anemia. The first was that I am extremely sensitve to gluten, and that the chance contact I get in my own home from crumbs on countertops or rinsing my veggies or beans in a clean colander that was set in a sink that had previously had pasta water in it was keeping my intestinal enteropathy going. The second was a possible issue with lectins, which are proteins found in a lot of the foods I eat, and which from what I've read can set off all the same markers as Celiac disease. The third was that all of the doctors for the last 25 years were right, and that I am anemic because I bleed every month and my celiac is a weird coincidence and that the anemia is really a blessing because it brought about my diagnosis. The fourth is that there is something else going on.
My blood tests came back perfect, except for the iron. B12 and folate were normal, as were the celiac antibodies. So either something else is going on, or I'm anemic for some other reason. Sounds like a job for the hematologist. Or WebMD. Either way, I'm going to continue getting my iron levels monitored and get topped off with a transfusion before I get really low again. I've felt so much better since my iron levels have been boosted and I don't want to slip back again.