I've been pretty darn strict with my gluten-free compliance. And yet, my anemia is alive and well. From my hematology appointment three months ago to the one a week and a half ago, my hemoglobin dropped from 11.4 to 9.6. I got my first transhfusion in over a year. I go back in a couple of weeks to see how things are going. In the meantime, I had THE WORST period ever. I've been feeling run down, I look pale, feeling light-headed, and I think I'll be getting another transfusion.
I asked my hematologist the obvious question: Shouldn't my small intestine be healed by now so that I can absorb the iron? He said I should take it up with my team at the Celiac Center. I spoke to them. I'll get more blood work to check the celiac antibodies to see if they have changed (for better or for worse) since they were last checked in January. In addition we'll test for folate and iron, both of which I've had a deficiency. Though if I'm getting iron transfusions, I don't know how illuminating that aspect of the test will be. And we'll take it from there. As I understand it, the only real way to know if my small intesting is healed is to do another biopsy. One thing at a time. I also know that anemia can have many causes. It would just be weird if the symptom that lead to my celiac diagnosis turns out to be caused by something else. I had a great visit to my hematologist. My iron levels are good, and we compared my celiac antibody tests from June to the ones from the Celiac Center, and my number dropped from 45 to 18! Anything over an 8 means trouble, so the 18 by itself was looking kind of bad. But compared to the 45, I'm kicking ass on the gluten-free diet. We'll know more at my next check-up with the Celiac Center in a few months. What's more, my dexascan revealed that I don't have osteoporosis or osteopenia, which I was kind of worried about. Yay me!
I had a great appointment with the celiac specialists at Jefferson Hospital in Philadelphia yesterday. It was so cool that they answered almost all my questions before I could ask them. They ordered all the blood tests that will determine any nutritional deficiencies I may have from years and years of malabsorption. I've got a bone density scan set for next month. It was so great that they knew to do this stuff and that I didn't have to demand it and have a doctor act like I am trying to tell him his business. I return today to visit with the nutritionist at the celiac center, and it will be interesting to see what more I might be able to learn. I pride myself on being a knowledgeable healthcare consumer and I've done a ton of reading on celiac disease, and I finally feel like I've got a real plan to manage this condition with healthcare partners who really know what they are doing.
One down side -- hyposplenism -- decreased spleen function -- is common in people with celiac, so they gave me a vaccination for pneumococcal bacteria which apparently is pramarily warded off by a healthy spleen. The shot seemed like it was like any other, but man, my arm sure hurts now! I feel like a total wimp. It took me the better part of a week to talk to an actual human being to be able to get an appointment at Jefferson's Celiac Center. The date is set for December 20th. I haven't been feeling the best lately, but I don't know if it's related to the celiac or not. Mostly my plan is to tough it out and hope it resolves on its own. Otherwise, I have around six weeks to put up with it.
In other news, I joined the local celiac support group. They hold meetings and events twice a year -- I just missed one in October. I should be receiving all kinds of groovy info in the mail soon, and I'm sure the March get-together will be here before I know it. A week and a half ago, I had an appointment with my hematologist, who reported that my iron levels have improved, which is terrific! I take it as confirmation that my gf diet is working. I noted that I've still been having some unpleasant GI symptoms (and I still am), he essentially said "I'm a hematologist. Go see your gastroenterologist." I told him I didn't like the GI doc that I had gotten the celiac diagnosis from but that the doc I had heard good things about had such a packed schedule that it would have taken many more weeks to get in to see her. He said that he'd have his office set up an appointment. I'm thinking that he's got some doc-to-doc juice and can get me an appointment pretty quick. A couple of days later his office called to say that the appointment was set for the first week in December. 6 weeks! Some juice!
In the meantime, I got info about the Celiac Center at Jefferson when I was at the eat-a-thon. I've decided that it doesn't make any sense to not have them as my medical team for managing my celiac disease. I tried all week to talk to an actual person in their office to get an appointment set, but to no avail. Very frustrating. I'm hoping that once I get into the groove with them, it won't be so hard. Oh, and the hematologist's office called a couple of days after the appointment to tell me that I'm deficient in folate and that I should take a folic acid supplement. However, I've read that folic acid can increase risks for certain types of cancer. I'd rather seek to increase my folate consumption through diet, which means eating even more green leafies. I'm now on a quest for a blender so that I can start incorporating more green smoothies into my diet. I also want to talk to the dietician at Jeff when I finally get hooked in there to get a real plan for any nutritional deficiencies and to get a read on my bone density. |
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