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Found 8 results

  1. Hi! I had my ferritin tested for the first time recently and although I fell in the "normal" range, I was at the VERY low end of normal and not anywhere close to optimal. i've been struggling for years with shortness of breath, fatigue, irritability, and lightheadedness, so this discovery makes perfect sense to me. My doctor suggested I take iron supplements - Slow Fe. I've started the pills, one 45mg at night with dinner. Although it makes me feel really off in the middle of the night, I'm willing to deal with it in the hopes it'll clear up my issues. Just curious if anyone has had luck with the supplements. Any thoughts on low ferritin levels. If it helps, I'm Celiac, gluten free since March of this year. Slowly trying to treat all the vitamin deficiencies and hopefully get everything that was effected by my disease back to normal. Would love any feedback from anyone who has fixed their iron deficiency or is currently struggling as well. Hopefully I've posted in the right forum! -Ami
  2. I just got off the phone with Walmart (who makes Spring Valley supplements) They confirmed that the 45mg slow release iron tablets DO CONTAIN GLUTEN! Even though it says nothing about it on the label and none of the ingredients seem to indicate it does!
  3. Hi there, I just noticed my iron supplement contains Iron Polymaltose. This is derived from both iron and Maltol. Maltol is obtained from roasted malt. ROASTED MALT ?. Soooo a person goes to the doctors, is diagnosed with Celiac and as part of the treatment plan is prescribed an iron supplement that contains Maltol, an extract from malt, to help raise their iron levels? These doctors are killing us. Anyway please be careful and read all labelling carefully. I only noticed this myself as I kept getting bloating and skin rashes after taking my iron supplement only to find out it contains polymaltose a derivative of Maltol. Also I really had to go digging to find out how polymaltose is derived. I FINALLY stumbled, after much effort, across a site that says it comes from Maltol, which in turn comes from roasted malt. Talk about futher igniting the fire. Anyway here is the link that shows iron polymaltose is obtained from iron and maltol. info. https://www.medscape.com/viewarticle/548571_2 Here is the link showing Maltol is obtained from roasted malt. https://en.m.wikipedia.org/wiki/Maltol
  4. 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
  5. Celiac.com 10/17/2017 - Are primary care physicians under-testing for celiac disease in patients with iron deficiency anemia? A new survey of primary care doctors indicates that they are. It's fairly common for people with celiac disease to develop iron deficiency anemia (IDA), but researchers don't know much about the frequency with which primary care physicians test for celiac disease in patients with IDA. A team of researchers recently set out to describe how primary care doctors approach testing for celiac disease in asymptomatic patients with IDA. The research team included Marisa Spencer, Adrienne Lenhart, Jason Baker, Joseph Dickens, Arlene Weissman, Andrew J. Read, Seema Saini, and Sameer D. Saini. They are variously affiliated with the Department of Internal Medicine, University of Michigan, Ann Arbor, Michigan, United States of America; the Department of Internal Medicine, Henry Ford Health System, in Detroit, Michigan, United States of America; the Department of Statistics, University of Michigan, Ann Arbor, Michigan, United States of America; the Research Center at the American College of Physicians, in Philadelphia, Pennsylvania, United States of America; Department of Internal Medicine, University of Michigan, Ann Arbor, Michigan, United States of America, Ambulatory Care, Veterans Affairs Medical Center, Ann Arbor, Michigan, United States of America. For their study, the team began by electronically distributing a survey to primary care doctors who are members of the American College of Physicians. The survey asked whether doctors would test for celiac disease, either by serologic testing, referral for esophagogastroduodenoscopy [EGD], or referral to GI) in hypothetical patients with new IDA, including: (1) a young Caucasian man, (2) a premenopausal Caucasian woman, (3) an elderly Caucasian man, and (4) a young African American man. The team chose the scenarios to assess differences in testing for celiac disease based on age, gender, and race. They used multivariable logistic regression to identify independent predictors of testing. Testing for celiac disease varied significantly according to patient characteristics, with young Caucasian men being the most frequently tested (61% of respondents reporting they would perform serologic testing in this subgroup (p Interestingly 80% of doctors surveyed said they would definitely or probably start a patient with positive serologies for celiac disease on a gluten-free diet prior to confirmatory upper endoscopy, which is contrary to guideline recommendations. This survey indicates that primary care doctors are under-testing for celiac disease in patients with IDA, regardless of age, gender, race, or post-menopausal status. The majority of primary care doctors surveyed do not strictly adhere to established guidelines regarding a confirmatory duodenal biopsy in a patient with positive serology for celiac disease. Clearly, even with all of the advances in celiac disease awareness and with more refined protocols, primary care doctors have some work to do when it comes to testing IDA patients for celiac disease, and even more work to do in following proper referral guidelines before putting patients on a gluten-free diet. Source: PLOSONE
  6. Iron: 17 mcg/dL (Low) November 11, 2016 Ferritin: 1.8 ng/mL (Low) November 11, 2016 RBC: 4.05x10^6/uL (Low) November 11, 2016 Hemoglobin: 8.5 gm/dL (Low) November 11, 2016 Vitamin D: 25.7 ng/mL (Low) February 22, 2017 ANA Profile : February 27, 2017 FANA: Positive FANA Titer: 1:640 FANA Pattern: Homogenous Gliadin IgA: 2 units June 29, 2017 Gliadin IgG: 3 units June 29,2017 TTG Ab IgA: <1 units/mL June 29, 2017 TTG Ab IgG: <1 units/mL June 29, 2017 Immunoglobulin A: 59.1 mg/Dl (Low) July 10, 2017 Immunoglobulin M: 44.2 mg/Dl (Low) July 10,2017 Immunoglobulin G: 1010.0 mg/Dl (Normal?) July 10, 2017 Immunoglobulin E: 5 KU/L July 10,2017 My RBC and Hemoglobin have come up and are normal. My iron levels will get high (too high) when I take 65 mg elemental iron twice a day for several weeks but my ferritin has never gotten over 42 ng/mL. When I stop taking my iron supplement my iron and ferritin plummet in just a matter of weeks. My hair is falling out, I get rapid heartbeat when I get too low on iron and if I get my iron too high. My whole body hurts especially my finger joints, back , knees and really all of my joints. Going to the bathroom at least 2 times day and sometimes up to 5 times a day. Extreme fatigue, Brain fog, extremely emotional and irritable. I just went gluten free July 1, 2017 and am starting to feel better. Joints feel better, I can sleep better, my mood is better. Celiac or maybe just gluten sensitive? Any thoughts? What do my labs say about me?
  7. I haven't been on the site for a while, but I needed a place to post where people understand, so here I am. I just received the results of my most recent blood work-up. I now go every six months to monitor my iron levels. This time I also requested my B12 be checked. In June, my ferritin level sat at 32, down from six months prior (33). I'e been struggling to eat more meat and to find a supplement that didn't hurt me (and they've all been gluten-free). My GP wants me to take 300mg of iron daily and I just can't find a way to do it. Today my number is 25. I don't understand. I've eaten strictly (and I mean strictly!) gluten-free since finding out about this whole issue last December. I also just discovered three weeks ago that I'm allergic to dairy. Not lactose intolerant....allergic. No more Greek yogurt for a while....if ever. (I was at the grocery store last weekend and found myself wandering aimlessly around, choking back tears. I felt like a little kid: "What CAN I eat??") My B12 has also been flagged as way too low. Not sure if it's lower than typical as I have to pay for this particular test so it hadn't been done before. My thyroid seems fine....and I have no symptoms of it being an issue. I know that doesn't mean anything after reading a few posts here. Not sure what I expect from this post....I supposed I needed a small pity-party It's been a VERY difficult year adjusting and just when I thought I had it figured out....bam. Thanks for reading my whining and I promise to buck up and suck it up and all that.....but not today.
  8. Hi Everyone, I'm new to the forum. I've been gluten free since 10/26/2013 and am still struggling. I have confirmed celiac's disease from both blood work and biopsies taken during an endoscopy. I didn't have much help in the beginning besides to just stop eating gluten. I did that immediately with no issues and I am not getting cross contamination. It is not in my house. I did replace all necessary kitchen items.. collanders, toaster, etc. Got new butter, jams, etc. I don't lick envelopes and it is not in my toothpaste, lipstick so on and so forth. I'm struggling. Some symptoms have gotten worse. I am still ill in the bathroom every morning. I feel internal inflammation all the time. I'm waiting for appointments with rheumatology (later in March) and endocrinology (beginning of April) because of various symptoms. A neurologist is also working on ruling out MS. I cut out dairy last month (not in the beginning/was told it was not necessary) and now I've pretty much cut out everything else (rice, potato, soy) because I'm desperate to feel better. I've been eating plain fruit, veggies, meat - no seasonings/sauce. Chicken broth. Coffee (yes, it is gluten free) once in the morning and green tea or chamomile. Because of my vitamin D level and ferritin level I am taking the following each day Calcium w vitamin D3 twice a day, a multi vitamin, iron, b-12. Also on 20mg of omeprazole every morning because of my esophagus. I also drink Kefir probiotic smoothie twice a day. (Could that maybe be making me worse?! Just a thought that came to me today) Along with celiac's disease so far I've been diagnosed with Barrett's Esophagus and was told I have osteomalacia. I could share the lifetime of issues (migraines, miscarriages, difficult menstrual cycles, etc, etc) that now seem eye opening but the above are the basics. Should I really still be struggling so much? This has been so difficult. I wish a doctor could tell me that I'm going to be okay. Thank you for any responses that come my way. Looking forward to getting to know you. ~Julie edited to add more: my Celiac diagnosis came after a very long year of many, many doctor appts. I lost 38lbs from Feb until diagnosis, I would fall for no reason, I have neuropathy, terrible periods, mood swings near period and ovulation, not sleeping well, night sweats, anemia, difficulty with things I was able to do before, completely beat all the time, skin issues (don't have DH), joint, muscle, vein issues... I started going to the doctor religiously in the fall of 2012 and by the beginning of Oct 2013 still did not have a diagnosis besides to reduce stress and take care of myself.
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