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Hello everyone! I am new to this forum and I am really happy that I have found such large and supportive gluten-free community. I have been reading previous content and it was most helpful. I am writing here to get more insight into people's experience with gluten-free diet and anemia. I have been diagnosed with celiac disease 8 years ago, and I am 34 now, but I think I may have had it since birth. According to my mother I had anemia since I was a child and for long time that was my only symptom. After being diagnosed and going on gluten-free diet I gained weight, no stomach pain, and my anemia improved. However, I still have quite low ferritin which is 1.9 and normal range is 15-150 , and hemoglobin that is below normal range (6.2 and range is 7.5-10). It is not as bad as it was but for sure it is not great. I would like to know if someone else has this issue even after many years of gluten-free diet? I don't take iron tablets because they wreck my stomach and I was never put on iron infusion - so I am not really doing much to improve my anemia except with food, and doctors here in the Netherlands do not offer any substitute for iron tablets. Even though I have anemia I feel completely ok, not tired or anything, stable weight and so on - I guess my body just adapted over the years. However my doctor is convinced that I have refractory celiac disease. Over the last 7 years I had 2x colonoscopy & endoscopy with biopsy, MRY, and video capsule investigation. All test were negative and showed nothing abnormal. In two weeks I will go for another colonoscopy & endoscopy with biopsy and I wonder if this is necessary. My doctor thinks that "just because we didn't find anything 2 years before, it doesn't mean we won't find something now", and he is convinced that I am bleeding somewhere in my body, which is always scary to hear, and I have been listening this for 7 years now, every time I go for an appointment. And refractory celiac disease is not something anyone wants to hear either. I would appreciate to hear your experiences on this matter, and every advice is most welcome. Cheers, A.

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?

Hi everyone I was diagnosed with coeliac disease 2 weeks ago. I have been eating gluten free and trying my best to avoid cross contamination. I would be really grateful to hear from anyone who had any kind of twitches pre and post going gluten free, as mine have still not resolved. I am aware of other scary diseases that can cause twitching but would really like to hear from anyone who' has attributed theirs to coeliac / and have stopped eventually after going gluten free, however long it took. So where abouts and in what way and for how long did anyone have any twitches? My twitches appear to be eyelid and also feet. I have been told I am anemic with low ferritin and I wil be getting tested for vitamin D and b12 deficiencies. Thank you so much to anyone who replies. I am feeling particularly low since being diagnosed and this forum is amazing for advice.

Hi everybody I've posted a couple of times previously on here and found the advice from you lovely people really useful and supportive. I'm sorry for any repetition in my post today - currently at work feeling completely overwhelmed and tearful all over again at current symptoms and feelings and thought I'd try and seek a bit more advice. Brief background - diagnosed with coeliac a month ago (by biopsy & TTG), and have been eating gluten free since. From what I've read, a month is not really long enough to expect any healing to occur, and I am aware of this so I'm probably just being impatient. Based on blood tests post TTG, and PRE endoscopy (in November) I have been told I have anemia, low ferritin, and low vitamin D, which from what I understand is common in those newly diagnosed. I am seeing a dietician and my doctor next week, and so other than a basic multi vitamin I have not been taking any additional supplements as I am waiting for formal advice. I have a few questions that I am considering asking the dietician and doctor and wondered if anyone could validate me feeling like I could/should ask this!! 1. Could being deficient in vitamin D, ferritin, and anemic cause or contribute to any symptoms such as tearfulness, low mood, itching / slight leaking anus after bowel movements, and twitching around the eyes, or am I not giving the gluten free diet enough of a chance to resolve these things on its own? These symptoms are getting me down and I struggle to accept that being low in vitamins could make me feel so rough! 2. With a Ferritin of 6 and Vitamin D < 30 , should I be on higher supplements or continue with regular tablets containing the recommended daily allowance? 3. When seeing the dietician / doctor, I'm wondering whether to ask for any additional vitamin checks, such as magnesium or zinc? I've read that deficiencies in magnesium in particular can lead to twitching so wonder whether I should be on supplements for these too. 4. As the vitamin levels mentioned above are from November, I am assuming they will have either stayed the same or dropped after a further 2 months of eating gluten for the endoscopy. Now I am diagnosed and eating gluten free, when would be a good time to request a repeat test of those levels (ferritin, vit D etc). I am having a DEXA bone scan this week. Sorry for the rambling post, thank you to anyone out there for any advice at all. Hoping this journey will become easier in time!

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

Hi, I have some questions that I hope to get some answers to. First of all, I am not diagnosed and have not been tested for celiac. Only bloodtest I have taken that's relevant is Ferritin and Iron. I'm not anemic, but both my levels are on the lower range of normal (Ferritin 20-25 and Iron 9 and Iron binding capacity a bit over the normal range). My first question is if this is normal in celiacs, or would the Ferritin and Iron be lower if I was celiac? I eat meat and vegetables and my periods are normal. Second Question is related to abdominal pain. I have these IBS related pains (cramping before going to the bathroom) sometimes and also some bloating and stuff. But sometimes I get this lower abdominal pain that is different, it's much much worse when I press my stomach in or touch it. It almost feel normal when I sit still in one position, but when i lean forward, touch it or press it in, it's really bad. Does anyone else with celiac relate to this kind of abdominal pain? The reason I'm asking these questions is because I'm wondering if I should get tested for celiac. I've had symptoms for a while now, and I want to suggest different blood tests to my doctor. I have a feeling I should get tested for something autoimmune. There are already three different Autoimmune diseases in my mother's family (grandmother with psoriasis, cousin with diabetes, mother with ulcerus colitis), and I've been having diffuse symptoms for a while now, like abdominal pain, diarrhea, muscle/bone pain, some joint pain, muscles falling asleep, some tingling, anxiety, neck pain, fever feeling without fever, chills, fatigue (especially after lunch), bad hangovers etc etc. The list is long. So I'm just trying to get some answers so I can be more clear with my doc. Thanks!

Okay. Long story short - I've had itching blisters coming and going for at least 10 years, I'm 27 now. When I was 23 I got diagnosed with an autoimmune kidney disease. Ever since then I've been very careful with my diet and avoiding, but not completely cutting out gluten. I've had stomach problems since I was a kid. Had acne since I was 14. Diagnosed with PCO. Always feeling tired. Can eat tons of food and never gaining any weight. Recently I found out I am anemic, Ferritin was 7 (range is 10-70 I think) I was also deficient in D-vitamin. They took transglutaminas tests but it was negative. I started eating gluten again in February, and my blisters and ezcema like rashes came back quite quickly. I know a gastroenterologist and told him about my low iron, my blisters etc. And he immediately said that it sounds like celiac disease. He scheduled a gastroscopy (they go in with a camera through the mouth and take biopsies from the small intestine) that I did today. The doctor took 3 biopsies and said that it looked like the villi was flattened. He also said that I could start a gluten free diet if I wanted to before the test results comes back. I'm just confused right now... shouldn't they do a skin biopsy on my blisters as well? I read about ppl having DH who do that and get diagnosed that way. how can the blood tests be negative and the biopsy not? if i go on a non gluten diet now, my blisters and rashes will go away which is good ofc, but then if the biopsy come back negative, they can't do a skin biopsy? It would make so much sense to me if I'm celiac. Therefore I'm scared the biopsy wont show anything since I've been going on and off gluten for years. Although the doctor said it looked like I am celiac? And the blisters can't be anything else than DH!! And the low iron and everything. Ugh. I just want the results now... And know for sure.