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  1. Hello... New to the board, first post :). Glad I found you... History.... I had been suffering with loose soft frequent stools and gas/bloating and lethargy for a while... About 15 months ago I brought it up to my PCP, and she suggested running a test for celiac. It came back negative. Iron levels were a bit low so started on a supplement. The last year the above symptoms have worsened.. OBGYN attributed it to hormonal changes (im 46). Two months ago I went back to see my PCP again (her nurse this time) for an annual physical and blood work. Talked to her about my symptoms again... So we ran a full panel blood work (no celiac test). Results came back with dangerously low iron, low vitamin D. Based on my symptoms she immediately thought there was something blocking the absorption of iron in my body and brought up gluten. We didn't test this time but rather, she wanted me to completely give up gluten for 3 to 4 weeks, double up on iron supplements and see how I felt after a month. I should add that I'm also vegan so consume plenty of greens along with iron supplements so I should not be deficient in iron. It's now been 8 weeks gluten free (with the possible screw up, as im still learning what to avoid)... And while my bowel issues have gotten 90% better (solid stools, far less flatulence), I'm Still extremely fatigued. I can get 8 full hours of sleep, yet feel I still cannot function with such low energy levels. I have to nap every day. I was getting dizzy spells during my workouts. I feel after 8 weeks gluten-free my iron levels should have improved but I still feel Lethargic as all hell and I just want my life back. Doc says it could take 6 months for iron levels to restore. Is this the case with any of you? I should add that I'm a very active mom of two. I workout every day and am in very good physical condition, I eat very well.. So this should all be supplying my body with a lot of energy. I feel at a loss... I want my life back. Any words of wisdom?
  2. Celiac.com 03/07/2018 - People with celiac disease can sometimes have hematological issues, including chronic anemia. It might be surprising to hear, but aplastic anemia and celiac disease share a similar underlying autoimmune process, but doctors haven't reported many cases that indicate that the two are connected. In fact, medical literature reveals only three pediatric cases indicating a connection. Recently, clinicians reported the first case in a female pediatric patient. The clinical team included Omar Irfan, Sana Mahmood, Heera Nand, and Gaffar Billoo, with the Medical College and the Department of Pediatrics at Aga Khan University Hospital in Karachi, Pakistan. Their team treated a 6-year-old South Asian girl who had bruises, petechiae, and recent history of loose stools. On evaluation, the team diagnosed the girl to have celiac disease and prescribed a gluten-free diet. Follow-up assessment including bone marrow biopsy showed the girl to have pancytopenia. The team managed the girl's condition with packed red cells, platelets, and diet restrictions, and the girl showed improving platelet counts over yearly follow up visits. Eventually, the girl will need a bone marrow transplant, and the team spoke about that to the girl's parents. This is now the fourth report indicating a connection between celiac disease and aplastic anemia in children, and the clinical team wonders if the connection might be more common than is currently understood. Timely treatment of celiac disease through strict gluten-free diet, or aplastic anemia through immunosuppressive therapy, could help reduce the development of other autoimmune conditions. Because all four pediatric cases reporting potential celiac disease/aplastic anemia association occurred in South East Asia, the authors suggest larger studies to explore this connection. Source: J Med Case Reports. 2018;12(16)
  3. Not long ago I donated blood, which I'd done many times in the past. I would always feel a little faint, but eating cookies and drinking juice before I left did the trick. This last time, I ate and drank as usual and thought I was OK. But when I left, instead of going back to work, I had to go home to rest. I just didn't have the energy to do anything. I didn't think much about it until the next day when I almost passed out from weakness. It took about a week to feel normal again. I had an endoscope and colonoscopy last week, and the Dr. said it looked like I have celiac disease. I won't see him for the results until next week, so I haven't been officially diagnosed. They do a finger prick to check for anemia before you give blood. My question is, how accurate is that test? I am constantly fatigued and my skin is pale. I bleed more than normal from minor cuts. Is there a more comprehensive test for anemia other than the finger prick?
  4. Last November I was diagnosed with Celiac disease. Ever since I haven't been able to remain gluten-free for more than two weeks. I always make excuses and tell myself that I will start "tomorrow." Before being diagnosed, I thought I was gluten intolerant for over a year. I never visited a doctor or anything, I just had a horrible skin rash every time I ate gluten plus stomach pains and other symptoms so I made assumptions. The thing is, when I thought I was gluten intolerant I had no trouble being gluten-free because I thought it was only a temporary or superficial thing. Like it was ok to get sick every once in a while if the consequence was only a skin rash and symptoms for some hours or a day. I ate almost fully gluten-free for the past year, except for special occasions when I made the decision to indulge. As many of you all know, it is mentally very difficult to accept that you have to restrict yourself from foods you love forever. I am Mexican and food is a central part of our life and family traditions, making it even more difficult. To make matters worse, my family owns a bakery that is next to my house so the kitchen is constantly filled with gluten treats, cakes, cookies, everything. But when I thought I was gluten intolerant, I had absolutely no trouble restricting myself from all the foods that were around my house. I also developed other food sensitivities recently: corn, legumes, most nuts, soy, etc. I also feel discomfort when eating gluten-free processed foods, perhaps because I haven't complied with the gluten-free diet for a long time. I most definitely understand how destructive gluten can be for a celiac. I know that by eating gluten I am damaging my body and health. It is not physically difficult to abstain from gluten, I am having trouble adjusting mentally and socially. I have read all the scary posts about what can happen if I don't follow a gluten-free diet, so I am not posting this so I can be motivated by scare tactics. I am posting this because I am honestly desperate. I feel physically terrible after eating gluten, but it is not enough to make me stop. In my mind, I justify myself by thinking that I should eat X food one last time before actually starting my diet. It is mindblowing to me that even if I know what can happen to my body, I just keep binging on gluten. I believe that a huge reason for this is that I feel misunderstood. I have never met another celiac in my life, so I don't really have anyone that actually understands how difficult it can be to change your lifestyle permanently. The advice I constantly get from my friends is "just stop because it makes you sick," which is not very helpful. I really think that I need to talk with actual people that are also going through this or that have successfully transitioned to a gluten-free lifestyle postdiagnosis. I figured this forum was a good place to start, but I am new here and don't really know the "social etiquette" around here. I would love to connect with other celiacs and hear about how you managed to go gluten-free. What resources where helpful? Do you have any helpful tips? Thanks for reading!
  5. Hello everyone, I am new to join this forum, though I have been look at your posts since I was diagnosed in September (it's now end of October). Just wanted to introduce myself. My name is Lori. I'm 43, female, and have had stomach issues for my whole life. As a child, I was ALWAYS tired. My doctor couldn't figure out what was wrong with me and just told my mom to get me into sports to help tire me out at night. I missed a lot of school because I was sick quite a bit, but got good grades so no one seemed to be bothered by it. Over the past 2 years my symptoms were consistently getting worse. Just before I had my gallbladder removed (gall bladder attacks that were getting longer), I started vomiting on a regular basis. Didn't seem to matter if I had an empty or full stomach or if I felt okay. I would be vomiting at least 2 times a week and chewing on ginger tablets constantly. Diarrhea also got worse but I didn't think much of it because I had been diagnosed with IBS when I was 20 and the celiac biopsies came back negative. I was taking 2 to 4 Immodium gel pills every day just to get through work. My doctor did numerous tests to find out why I was so sick all the time but no positive results for anything. She decided to send me for another gastroscopy and colonoscopy since it had been over 20 years since my last one. There, the doctor found out that I have a sliding hiatus hernia, ulcers, and bile reflux. He also did some biopsies which came back "blunted villi" so he recommended that my doctor send me for celiac blood tests. Sure enough, they both came back positive. This after a psychiatrist told me I should be tested again - years ago when the depression medication didn't work and my inflammation levels were through the roof. Today I also found out I have osteopenia. I thought I had worked through the anger that I hadn't been diagnosed years ago (when it wasn't too late to prevent a lot of the issues I have now), but it has raised it's ugly head again. My question to all of you is, how did you get past the anger at all the missed/wrong diagnoses over the years? I would have gone back and insisted on the doctor doing something if I hadn't assumed I had IBS for over 20 years. Maybe I could have had children. Maybe I could have prevented the bone loss and hair loss. Also, did anyone find that their hair grew back? How long did it take? Happy to have found all of you! Lori Here are my symptoms/related illnesses: Depression (diagnosed at 19 with intermittent success with medication combinations) Chronic inflammation Joint pain Skin rashes Chronic fatigue B12 and Iron deficiency anemia for years - I have had to take strong supplements for over 20 years. Hair loss PCOS (but I still ovulate so I'm wondering if this is true) Insulin resistant/pre-diabetic Very overweight beginning in 20s with difficulty losing weight for years (except the time I eliminated ALL grains)
  6. 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
  7. 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
  8. 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?
  9. Hi, I live in Ukraine. All of a sudden my 9-years old son was diagnosed with celiac disease. In December 2016, we have done blood tests and everything was ok. At the end of February 2017 he became ill, the body temperature was up to 40°C for several days. But the disease has gone. In April, some hematomas began to appear on son’s skin. At the end of May 2017, the blood test has reveled thrombocytopenia and anemia, PLT count fell to 7000. No bleeding was observed and hematomas appeared after physical impact only. I have celiac disease too, so I have done tests on endomysium IgA and transglutaminasa IgA. The results were far beyond normal (> 10 times higher than the norm). We have omitted endoscopy because of thrombocytopenia. The latest blood test (venous blood test after two weeks of GFD) has shown the following results: thrombocyte 11000 (+3000 in three days), RBC 2.29, WBC 3.90, hemoglobulin 71 g/l, MCV 90.6 fl, RDW 20.1%, MCHC 339 g/l - 30,7 pg, neutrophiles 0,27 g/l, lymphocyte 3,39 g/l - 87%, monocyte 0,16 g/l - 4%, eosinocyte 0.04 g/l - 1%, basocyte 0/0, metamyelocyte 0/0, myelocyte 0/0, virocyte 0/0, ESR 35 mm/h. Now we’re keeping to a strict GFD with vitamin B12, folic acid, vitamin C, iron supplements , copper and vitamin K. The boy shows vitality (some weakness/tiredness is observed, but it’s not severe), no bleedings, no vomitting or nausea, no bone- or headache. Please share your experience if you have the same or similar set of celiac disease symptoms.
  10. I'm looking for some help to understand some recent bloodwork. I slowly became anemic over the past year and only discovered it when I was at a critical level (Hbg of 7, Ferritin of 3, etc.) I received 3 iron IV infusions during the month of May (total of 1500 mg(?) of Feraheme.) I had my blood checked a week after the last infusion (June 1st) and again this week (July 6th.) Most of my numbers seem good, but my Ferritin levels have dropped a lot, but are still within normal range. Has anyone else had a drop in Ferritin after infusions? Is this normal or something I should be concerned about? Here are my levels (June 1st, July 6th): Ferritin (320.1, 108.1) Iron (88, 92) Hemoglobin (12.4, 13.4) Hematocrit (41.7, 43) Other variables: I am an endurance athlete (cyclist) and, on average, spend 7 hours+ on the bike each week (I ask a lot of my body) I am currently training to climb Mt. Rainier (14,000+ feet) and I can only do that if my hemoglobin stays in the normal range (I climb in less than 2 weeks, so I think I'm good there.) I have had a hysterectomy, so the anemia is not related to any type of menstrual issues, etc. I had a celiac panel done before I began the first infusion and it came back normal - my levels were not elevated at all. Could celiac still be the root cause (malabsorption) of the anemia? Thank you in advance for any information, advice, etc.
  11. When my son first started having really severe symptoms, about July- his bloodwork showed a low hemoglobin of 9. In Early Sept. he was tested again and it dropped to 7! Now he was retested last week and it went up to 11. The dr. has no explanation for this, as he has tested negative for all his celiac tests.. but I put him on a gluten-free diet in mid Sept. Is it possible the change in diet improved his anemia in that short a time? He has not been on any iron supplements except through his tube feeding formula, nothing has changed in that period of time except for taking out the gluten.
  12. Hi everybody, I'm very curious about people's experiences with iron infusions. My understanding is that iron deficiency anemia and/or low ferritin levels is very common in Celiacs, in fact it may be only telltale sign for some to actually get tested for Celiacs. I myself have a lowish ferritin level of 18 ng/mL but normal Hemoglobin, Hematocrit, MCV, and MCH values. From what I've seen, >50 ng/mL is preferable, even higher in some cases to prevent the typical iron deficiency symptoms like fatigue, shortness of breath, etc. I've been doing research online regarding people's experiences with the iron infusions. Often times much is said concerning how the iron infusion works, people's experiences in the clinics while getting the infusion. But a lot is left out about how people are feeling later on i.e. 3, 6, and 12 months down the road. What are the typical results one can expect? I understand often times it takes a while to see improvements but did anyone notice any substantial increase in energy, depression/anxiety, physical fitness, etc? Or on the flipside, did anyone resolve their iron deficiency but did not see any improvements? Thanks in advance. This is something I'm really interested in hearing. Good and bad experiences. I guess for my own sake I'm wondering if iron infusions are worth it down the road. My doc had me on ferrous sulphate tablets 260mg daily for a month, but I really didn't see any improvements and all it did was make me very constipated and bloated.
  13. Hi, I'm new and looking for other's experience and advice. I recently went to the dr., due to having extreme fatigue for several months. Much to my surprise, my blood count/ hemoglobin was extremely low, so much that I needed 2 blood transfusions . I was shocked! Have always been slightly anemic, but nothing like that. Found out later, my iron and vitamin D were also low. Got a referral to see a GI dr. and went there this week. He wants me to have an endoscopy, colonoscopy and Celiac blood test, which is what brought me here! I had that done and am awaiting results.The endo is scheduled for next week. so I was extremely surprised about the celiac testing, it's something that really wouldn't have crossed my mind. Aside from the anemia, fatigue and vit. deficiency, I haven't noticed many other symptoms. I have had some heartburn lately and started taking acid reducers, also insomnia and headaches. But no GI symptoms really, unless I drink a few beers, then I feel extremely bloated with a stomach ache. Anyone else have this type of experience prior to diagnosis?
  14. Celiac.com 06/09/2014 - Anemia is extremely common in patients with celiac disease. In some cases, anemia may be the sole manifestation of celiac disease, but there is no good data on rates of celiac disease in Indian patients with nutritional anemia. A research team recently examined rates of celiac disease among nutritional anemia patients at a care center in India. The team included A. Kavimandan, M. Sharma, A.K. Verma, P. Das, P. Mishra, S. Sinha, A. Mohan, V. Sreenivas, S. Datta Gupta, and G.K. Makharia. For their study, the team conducted positive celiac disease screens on adolescent and adult patients presenting with nutritional anemia. They also prospectively screened for celiac disease using IgA anti-tissue transglutaminase antibody (anti-tTG Ab). Subjects with positive antibody screens received upper gastrointestinal endoscopy and duodenal biopsy. In all, the team screened ninety-six patients. Of these patients, 80 had iron deficiency anemia, 11 had megaloblastic anemia, and 5 had dimorphic anemia. Seventy-three patients were receiving hematinics and 36.4 % had received blood transfusions. Nineteen patients had histories of chronic diarrhea persisting for an average of about ten years. Of those, the team found 13 patients with positive IgA anti-tTG Ab screens, 12 of whom agreed to duodenal biopsy. Ten patients showed villous atrophy (Marsh grade 3a in three, 3b in one, and 3c in six), while two patients showed no villous atrophy. In all, ten patients with nutritional anemia, defined as iron deficiency 9, vitamin B12 deficiency 1, were also diagnosed with celiac disease. Multivariate logistic regression showed age, duration of symptoms, and presence of diarrhea to be the main predictors of celiac disease. The team put all patients with celiac disease on gluten-free diet, supplemented with iron and vitamin B. All patients showed significant improvement in hemoglobin concentration. The team recommends celiac disease screening, and appropriate follow-up in all cases of unexplained nutritional anemia. Source: Indian J Gastroenterol. 2014 Mar;33(2):114-8. doi: 10.1007/s12664-013-0366-6. Epub 2013 Sep 1.
  15. Hey, I am new here. I been having many symptoms celiacs disease, including clasic and non classic symptoms, neurological problems and even Alopecia Totalis (since the age of 19, no eyebrows etc). However, my CBC, Iron and B12 are allways normal. I have had low Iron levels once, when I was a kid, but when I do my routine blood tests each year, theyare fine.. Althoug, I have had low levels of potasium good few times, but they werent above the norm. I recived my CBC, b12, Iron blood results just few days, stil waiting for my antibody results to come back in few weeks. My symptoms I experience are: Frequent infections, colds (every year) Alopecia universalis (Not even one hair on the body) Eczemas Nail problems Fungal infections Spots Frequent nasal bleeds (especially when I was a kid) Bloating, gas, GERD, fatty stools, diarhea Enamel problems Lip sores Hot flushes Cold hands and feet Nasal congestion Dry skin Sore eyes Heat intolerance Swolen neck lymph nodes Bleeding gums Bruising Blacking out when standing Dizzines during physical activity Dandruff ADD, brain fog, anxiety, severe depression, extreme fatigue, memory problems, panic attacks when I was a kid. etc.. Weight gain and loss Unable to gain muscle So my main concern was, if it is possible to have Celiac without ANEMIA, folate or b12 deffency? I really wish it was Celiac, this would mean a possible end of my problems. As I am 23 yo and been feeling like an old man since I was a little kid.. P.S. I got my thyroid checked few times and all came clear.Not sure if thyroid tests can show Heshimotos though. My GP thinks that I am a hypocondriac, so do I sometimes..
  16. 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.
  17. Hi All, I am extremely frustrated with my gastroenterologist. I am not sure if there is an issue with diagnosing celiac or really what the underlying issue is. I have had abdominal pain ranging in severity of a few hours to a few days. This abdominal pain has been going on for years, and I was often told it was due to lactose intolerance. I avoid lactose, so I was confused why that was still the diagnosis. In addition to abdominal pain I also developed severe acid reflux following consumption of inert foods like english muffins, pasta, tortillas or anything in between. I went back to the doctor 2 months ago for the acid reflux and they did blood work and were actually willing to work me up this time. I was diagnosed with severe iron deficiency anemia. Hgb=6 and Ferritin at 1 I was rushed to the hematologist and they started iron infusions, which I feel fine. They were immediately worried that I had Celiac and did all of the blood tests, but all of my antibodies are negative. I decide to try coming off gluten, and I have been 98% gluten-free for the last two months and feel better than I have in years. No abdominal pain and no acid reflux. The gastroenterologist says that Celiac would be the logical answer with the abdominal pain, acid reflux, and iron deficiency anemia but since my blood tests were negative he will not diagnose me with Celiac disease. However, he had no cause for the iron deficiency anemia or acid reflux. Endoscopy and Colonoscopy were negative. has anyone had a similar symptoms? I would just like a definitive diagnosis. I am going to stay gluten-free, but it would be nice to have a diagnosis. Thanks!
  18. Hi, My 4 year old son was just diagnosed with celiac disease. We had blood work done twice, endoscopy with biopsy, etc. He has been on a strict gluten free diet for about a week. He is very anemic, has had very slow growth the last 2 years, has the typical "pot belly", etc. His stomach aches have already stopped...but I was curious when the anemia, pot belly, and growth, etc. might start to resolve. What was your experience? Thanks so much.
  19. Celiac.com 09/05/2013 - Current medical science describes diarrhea as a classical symptom of celiac disease, while anemia is described as an atypical or silent manifestation. However, there was actually very little information that accurately compares the severity of celiac disease between patients who present with anemia against those who present with diarrhea. A team of researchers recently set out to determine whether people with anemia have more severe celiac disease than people with diarrhea. The research team included H.A. Daya, B. Lebwohl, S.K. Lewis, and P.H. Green. They are affiliated with the Celiac Disease Center, Department of Internal Medicine at the Columbia University College of Physicians and Surgeons in New York. For their study, the researchers selected a study group of 727 patients from a database of celiac disease patients evaluated at a tertiary referral center between 1990 and 2011. They used the degree of villous atrophy and clinical and serologic parameters to determine the severity of the celiac disease for each patient. The team compared patients according to mode of presentation and sex. They also conducted age and sex-adjusted multivariable analyses to assess the association between the mode of celiac disease presentation and cholesterol level, bone density, severity of villous atrophy, erythrocyte sedimentation rate (ESR), and level of anti-tissue transglutaminase (anti-tTG). They found that just over three-quarters of the patients presented with diarrhea, while just under one-quarter presented with anemia; 92% of which was iron deficient anemia. Multiple regression analysis showed that celiac disease with anemia was associated with lower levels of total cholesterol (P=.02) and high-density lipoprotein (P=.002), and a higher ESR (P=.001) and level of anti-tTG (P=.01). In women only, celiac disease with anemia was associated with a lower level of cholesterol. Anemic patients were more than twice as likely to have severe villous atrophy and a low bone mass density at time they were diagnosed with celiac disease than were patients who presented with diarrhea. So, the results show that celiac disease patients who present with anemia have more severe disease than those who present with diarrhea. There also seem to be sex-specific differences with respect to the connection between anemia and the various features of celiac disease, such as cholesterol. Source: Clin Gastroenterol Hepatol. 2013 Jun 8. pii: S1542-3565(13)00775-1. doi: 10.1016/j.cgh.2013.05.030.
  20. Hi, I'm new here and although I've been wary about eating healthy, in terms of salads, fruits and vegtables for a number of years, I'm 28, I recently decided to go 100% gluten and dairy free (like checking all labels and watching out for cross contamination, because I have had a number of what I thought to be abnormal health issues over the years which never really made that much sense. I'm in good shape and feel fine, relative to how I usually feel, but just still wonder could some of these issues be related to the same source, gluten? My Mom finally went gluten free a couple months ago. She had IBS and GERD for years and it has helped her a lot. She was not overweight but also lost 10 pounds in a month. I've been mostly vegetarian as an adult and am very into not eating processed foods or added sugars, so I'm adding some meat into my new diet, which I can already feel some difference, in terms of being more calm. As a kid my Mom, who didn't know at the time, fed us a lot of bad grain type foods and we always had ice cream and those processed betty crocker baking items around, but all of us seemed to have had pretty good metabolisms, considering what is in that stuff! My dad still eats all those processed foods and has always been extremely skinny, but is generally depressed and irritable. Here are the health issues I've had that I would really appreciate any feedback on the relation to gluten or casein, if know from personal experience: -starting as a teenager felt foggy headed and somewhat depressed. -Had red flushed cheeks and rash on backs of upper arms for a few years in early teens -got first period at age 14 (which I always thought was a little old) -didn't have period for almost year ages 15-16 -had pnemonia -very low resting heartrate at age 16, normal weight, doctors told me i must have an eating disorder, a heart condition, or brain tumor, eventually blood test showed very high TSH and I was diagnosed hypo-thyroid from hasimotos. -diagnosed with adhd in college, but have had the symptoms for as long as my parents can remember. - have had anemia or low iron and also a lot of coldness at the extremities since being a teenager. -have had periods of time where i am really into oatmeal (plain), nothing added, i think this is because of cross contamination with gluten. Thanks so much for reading
  21. I am iron, B12 and D3 deficient and living with a multitude of gluten related symptoms. I've been told that I'm 1 point away from being considered Celiac, but I haven't had biopsies or genetic testing. I've seen 2 different opinions - can you have Celiac and not have one of the 2 genes associated with the disease? Also, do you see the nutrient deficiencies in NCGI? Putting the puzzle pieces together is so complicated! Thanks for any insight.
  22. I am q 29 year old female who has suffered from Iron Defency Anemia for 2+ years before finally being diagnosed with Celiac two weeks ago. My diagnosis was severe malnutrition due to Celiac. It has effected my B12, calcium and other nutrients as well. My only symptons of Celiac have been my nutritional defencies. No other GI symptoms. I am slated for a bone density test this week, but my Iron Infusions are not set for another 2 months. I am feeling extremely exhausted, and can barely function, however they dont seem to feel like my iron infusions require fast tracking. Anyone else have such low iron and wait that long for infusions? How long did it take before your body started absorbing iron from food again? (FYI my iron has consistantly been at 1 for the last year + no improvement what so ever with large dose oral iron.)
  23. South Med J. 2004;97:30-34 Celiac.com 03/30/2004 – According to Umaprasanna S. Karnam, MD (University of Miami School of Medicine in Florida), and colleagues, celiac disease is present in around 3% of iron-deficiency anemia cases. The researchers looked at all patients seen at the University of Miami for iron-deficiency anemia between 1998 and 2000. Iron-deficiency anemia was defined in their study as serum ferritin less than 25 ng/mL and hemoglobin less than 12 g/dL for women and less than 14 g/dL for men. Interestingly, patients with prior documented ulcerative or erosive conditions of the gastrointestinal tract or overt gastrointestinal bleeding during the prior three months were excluded (which means that many with advanced celiac disease would have been excluded from this study). Out of 139 possible patients with iron-deficiency anemia, 105 patients were included in the study (57 men and 48 women). According to the researchers: The prevalence of occult celiac disease in this prospective study of patients presenting with iron-deficiency anemia was 2.8%. A significant number of other gastrointestinal lesions amenable to therapy were also found on upper and lower endoscopy in these patients, the authors write. Given the treatable nature of celiac disease, it should be screened for in patients with unexplained iron-deficiency anemia with or without hemoccult-positive stools. The investigators recommend panendoscopy and screening for this treatable condition in unexplained cases. It is likely that had the study included patients with gastrointestinal bleeding or ulcerative conditions the rate of celiac disease would have been higher, perhaps as high as 5%.
  24. Br J Haematol 2000;111:898-901. Celiac.com 02/15/2001 - As reported in the December issue of the British Journal of Haematology, Dr. D. J. Unsworth of Southmead Hospital in Bristol, UK, and colleagues examined 483 blood samples that were found to be anemic (hemoglobin Results: The researchers found that by screening anemic adults for celiac disease they ended up with a detection rate of 6%, compared with 0% detection of celiac disease using EDTA blood samples from 250 non-anemic blood donors. Conclusion: Celiac disease in menstruating women is under-investigated as a potential cause of iron-deficiency anemia. Celiac disease serology is easy, cheap and reliable, and the researchers recommend that all cases of anemia with an uncertain cause, including when the only cause is though to be menstruation, be tested for celiac disease-associated autoantibodies.
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