Sofie K replied to Sofie K's topic in Celiac Disease - Post Diagnosis, Recovery/Treatment(s)Thanks for the advice, everyone! I will definitely try keeping a food diary and look into the various supplements you suggested. Cheezus, I especially appreciated your empathy and suggestion about contacting a hematologist. While I certainly appreciate all the tips, I do want to respond to the concerns about my gluten-free compliance, because I'm not sure I was clear. When I was diagnosed, I knew almost nothing about the disease and asked the doctor who performed my endoscopy if it would be okay for me to wait to cut out gluten after returning from France. His response was that it wasn't that bad if I waited two months and that he understood my concern about how it would affect me on the trip. As soon as I got back, I began a gluten-free diet and have been gluten-free since. I took the time to do my research and met with a dietician. I'm not intentionally eating any gluten and am doing my best to avoid cross-contamination, but it's challenging living in a house with 5 other students who all eat gluten. I do keep my food separate from theirs and I use new cutting boards, measuring cups/spoons, and cookware. I also made sure my medications, cosmetics, and toiletries are gluten-free. I also understand that IV infusions are a temporary boost and are not a way to cheat the system and still eat gluten. I have no intentions of ever going back to eating gluten, but I worry that right now I can't control all of the variables which impact my food and could still have some unknown cross-contamination impeding the healing process. I'm worried about how long it will take for oral supplements to work for me. My B12 and folate levels are normal, I take vitamin C with them, and I avoid calcium for a couple hours before and after, but still it seems my gut is not currently healed enough to absorb enough iron from my diet or the supplements for my daily needs. I'm afraid that if I don't get healthier soon, I'll have to take a year off from school, which would most likely mean losing the last year of my scholarship. For that reason, I thought IV infusions seemed like a way to potentially give me enough of a boost to keep me from burning out before my intestines are fully healed.
Sofie K posted a topic in Celiac Disease - Post Diagnosis, Recovery/Treatment(s)Hello! I'm hoping to get some advice from y'all about iron IV infusions. First, some background: I was diagnosed with celiac disease at the beginning of June this year (2017). I had labs done in March and my serum ferritin was 5 ng/mL. Hgb was 11.1, which isn't all that low, but is still flagged as below the normal range. I took 325 mg ferrous gluconate supplements daily for two months, and when my ferritin was rechecked, it was down to 4. The doctor ordered a celiac antibody panel and all of the levels were high. Confirmed with endoscopy at the end of May. A month later, I left for a 2-month study abroad program in France (aka the land of bread and pastries). After returning to the US at the beginning of August, I finally went gluten-free. At the beginning of September, I returned to my University. Almost immediately, I realized I was really tired and was having a hard time making it through the day without a nap. I finally had a follow-up GI appointment around September 20th with the PA of the doctor who performed my endoscopy (not the same doctor from March). During the appointment, I asked her what we would do if my labs showed an iron-defiency. She told me that we would either do oral supplements or IV infusions, depending on whether or not she thought I'd absorb the supplements. When the lab results came in on the online patient portal, she made no comment on any of the iron-related results, just sent me a message that my antibody levels were still quite high, that I needed to keep up a strict gluten-free diet, and that we would recheck everything in six months. My ferritin was down to 3, Hgb was 10.3, iron saturation 6%, etc. I was concerned about those results, so I called the PA's nurse and left a voicemail asking what the plan was for getting those levels up and got a portal message back from the PA saying that my hemoglobin was slightly low and will get better over time as I cut out all the gluten in my diet, but that I can start taking supplements if I want to speed up the process. I know that the Hgb still isn't that low, but it seems like the ferritin level is more serious. I went back for an appointment with the doctor who first found the iron-deficiency back in the spring and she seemed a lot more concerned. When I brought up IV iron therapy, she seemed to think it was a good idea. However, she's a primary care physician through my school's clinic, so she can't give me infusions. She called the PA with the intention of finding out whether or not she would change her mind about infusions, and had no luck. Interestingly, the PA's nurse informed her that they don't expect me to be able to absorb the supplements right away, and would consider IV infusions after I've been gluten-free for another six months. I've done a bit of research on the IV infusions and it seems like I fit the criteria. Based on my antibody levels, I'm clearly not able to absorb iron any better than back in the spring, when the oral supplements did nothing for me. I understand that once my intestines heal more, I'll start being able to absorb iron better and should be able to boost my levels with oral supplements. However, I feel like I need a solution that will help me much sooner. I have a very demanding course load this semester and I'm constantly exhausted. I fall asleep doing homework at least twice a week. My grades are suffering, my mental health is suffering, and my relationships are being tested. I still don't have an explanation for why the PA doesn't think IV infusions are appropriate and I don't understand it. I really don't know what to do next because I'm afraid if I try to talk to the PA again, she'll get annoyed. I know that was super long, so for anyone still reading, thank you for bearing with me!! Now for the questions: 1. Do you think iron IV infusions in the near future would be a reasonable treatment for me? 2. Do you have any advice on how to make them happen? And if you have any other advice that's relevant to my situation, I'd love to hear it! Thanks so much, Sofie