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Found 47 results

  1. Please help, I am 30.All my life from childhood I had upset stomach pain and cramps.As a child was frequently treated for giardia and still had cramps.As a child so strange I had bumps with water on skin.Not redness nothing else.Just bumps filled with water all over my body.Later I never had these.But in my early teens I started with fatigue anxiety.Then extreme fatigue.Hair fallen.Eyebrow loss over a few years to nonexistent eyebrow.Always low iron even with supplementing.Low vitamin D3.Low calcium and magnesium.Gastrointestinal for a few months now I have cramps daily.Diarheea almost daily.Treated for parasites and giradia.nothing changed. OTHER symptoms. Bone pain.Spinal pain.Headache.Eye floaters.Done MRI and eye exams nothing all clear Low iron again at blood work. Low exercise tolerance. So bloated I seem like pregnant in 9 months even !!!if i lost weight the last three months Itchiness all over body but no bumps just redness Itchiness extreme on the scalp. Petechiae small red spots all over my body this is for years now. Tried gluten free even though in my country very hard to keep up with this. Only for few days then gave up and tried again and so on. Did some blood work but only 2 antobodies and not IGa and Igg judt one of them.Negative.this was two years ago. I don't know what to do. Oh and mouth ulcers. And have gas i am afraid because i can hardly control because i am extremely bloated. I am desperate. Thanks.
  2. I have been gluten free since Feb 2012. Many of my symptoms have subsided, but there are some alarming ones that have maintained and persisted. To the extent I had gone back to the dr. b/c I believed them to be something separate from the celiac disease. Now I'm not sure. The dr.s have no clue and I believe they are ready to send me for a psych consult. The neurologist alluded to a conversion disorder...psychosomatic etc.....I know that is not it. My celiac dr had put me on the Fasano diet, b/c I am so sensitive to gluten, and the 3 accidental exposures I have had have laid me out for 5 weeks at a time. I have been doing better since the Fasano diet, but these things have stood out glaringly. I have persisting dizziness and lightheadedness. Fatigue is severe. I wake up fine, and do as much as I can before I am a waste case for the rest of the day. That is between 6-9 am... and then I am exhausted for the rest of the day. If I rest, I can get a little energy back and it is gone quickly I feel like a cell phone that can't hold a charge. I have episodes when I am walking, I start to slow down, balance is off...weakness takes over, I can barely walk, or hold a conversation. My face goes grey, my eyes are sunken. I need assistance getting into a chair. It takes a few hours before this passes. I feel like I am trapped in my body. Sometimes this comes with a sensation of a shivering or fluttering sensation in my brain. It is very concerning. However, the neurologist has never heard of this before. (thankfuly my celiac doc told me yesterday that he has had patients with the same fluttering....No other dr!) When these episodes pass, they leave me exhausted for hours to days. Please can someone advise if they have had some of the same symptoms? My ANA is high, 640 My ttg is around 29. I live in 100% gluten free house. Including all of my beauty products.
  3. I hope not to make this long but I am in dire need of advice. I have been having these episodic seizure and stroke like symptoms. It starts with my eyes fluttering. I typically slump over. My legs work but I can't lift my head. Sometimes the left side of my face goes numb. I am completely unable to think or speak. It's like my mouth won't move right. If I can move my hands/arms, then I can not write or text. I also have difficulty walking (the leg I broke in a car accident gets really tight) This happens when I wake up, at work, walking, in shower, and sometimes in mid conversation, and once while driving (don't drive anymore). I've been to many doctors. Some nerve in my neck is crooked or slightly blocked. Referred to neuro. He thinks its a seizure. Long story short after several EEGs, MRI's, an MRA, and blood test they find: white spots on brain (unusual for age), positive western blot for Lyme (IgG), negative EEG, negative MRA. No strokes. negative spinal fluid. negative for lupus. Later, negative for Lyme on a C6peptide test. took Topamax and that stops migraines I was having, but not the episodes. referred to psych. she says no mental health issues after examining me. continue to see her because I'm so stressed about not feeling well. My general diagnosis is complex migraines. At some point I had a seizure like episode and was diagnosed with a complex partial seizure, but that was changed after the EEG's. June 2013: Go alcohol and gluten free. Then just gluten free. Miraculously I had no episodes for a week. After 2 weeks my hands and feet aren't numb. Oct 2013: Celiac panel is negative. My red blood, iron, and hemoglobin are all very low Now: Despite being gluten free, I find that I constantly get "glutened" by little things (bun accidentally left on my burger, corn tortillas that aren't really gluten-free, medicines etc) . One glutening can result in multiple episodes. The longest I've gone is a week and a half without episodes. Before June I had them everyday multiple times and they were very severe. I can't find a doctor that will answer my questions to save my life. I live near NIH, so you would think there are plenty of intelligent docs here but I have been largely unsuccessful. I like to work hard and I am ashamed at my performance (work and school) because I have these uncontrollable episodes. Does anyone struggle with this? What doctor did you go to? Have you been able to get anything other than "don't eat gluten"? Are you able to get a diagnosis?
  4. 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?
  5. TL;DR Mom is a celiac. Father, Brother are lactose intolerant. Sister has IBS problems as well. I believe I have gluten allergy, even though every doctor test is negative. But I do have geno-type for celiac. Marijuana has become my only solution to stop the pain and get hours of relief. No other medicine works. but pot lets me go to work, without crapping my pants and getting paid to s$#&. Anyone else in my particular situation or does everyone else feel it differently? Hello, My name is Ryan and I am a twenty-four male, 300lbs, 6ft 4in. Ive been haunted by stomach/head aches for almost my whole life. Gaining depression in middle school, which downward spiraled by the time I was 20-21. Ive been diagnosed with Chronic Lyme Disease which is, I guess, controversial among physicians on whether or not it is actually a real thing. My Dr. gave me that diagnosis at 16, after going to him with Lyme for the 8th time. My mom figured out she was a celiac when I was 20 years old, so I then started on a gluten-free diet and felt good, but didnt realize that it was actually helping me. I went back on gluten to have the testing done, but it came back negative. So I said okay, I'm not allergic to gluten it must be my imagination or something else and went on my way. Had two more doctors tell me I probably wasnt Gluten intolerant. I then started to get serious urinary issues, and started to go to urologists. They couldnt find anything wrong, so I went to a GI and they told me nothing was wrong, after doing all the testing over the years, they said I wasnt allergic to Lactose or Gluten, however my most recent GI said I have a Geno-type for it. MFer*** I know its already here. It doesnt take but an hour and I am in gut wrenching pain and cant get off the toilet for sometimes hrs, with breaks in between (4 times on) and the pain and discomfort lasts for hrs. The doctor has put me on every kind of medicine and nothing works. He said well you dont have anything we test for, so I'm just going to say you have IBS. Which still makes sense, because there is times, I know I havent touched gluten ( I dont think, I'm not a very good label checker) or cheese and I'm still in the BR. I am currently on 50MG Amytriptaline (spelling) for the depression, urinary issue and intestinal inflammation(whether its there or not, the gastro put me on it, and it keeps the other two things at bay, so I cant go off it. However, it doesnt do too much for the stomach problem. The only solution I have found is Marijuana, which I have only recently started (1yr), but man does it make a difference. Now I can have a full time job, but I have to smoke to go to work. Which isnt my most favorite thing to do , but Ive gotten used to it and it helps me tremendously. So its become my catch all illness defeater. However, it only puts my intestines on hold(how long depending on how much pot, but usually a small amount keeps my stomach at bay for about 6-8 hrs. I can suffer the last hr at work, but at least I'm not in the bathroom for my whole shift. Which is great, its an amazing feeling to be at work without something plaguing you. I still dabble in gluten, like 1 slice of pizza, here and there (bc im supposed to be not gluten intolerant) but the devil strikes every time. Im sure Ive missed some stuff, but would like some feedback on the route I should take, get some insight, my wife said I should go to a holistic doctor, which has amazing reviews near us, but its 500 dollars cash to get the evalution and its not covered by insurance. She thinks I'm allergic to soy, which I guess is in both lactose and gluten?? But ive never been tested for that. I want some light to follow. Thanks Is it typical to feel an attack so fast? It happens between 15 minutes to 2 hrs, giving the span, but usually an hour. Does everyone react the same way to gluten? - I dont get diarrhea or constipation, I get a little of both, its loosely packed and hard to pass with excruciating pain. Other times ( I think this is the IBS part), it'll just come out of no where, but its not super painful, but I cannot hold it at all. Could all of my problems be Gluten/Lactose...or just part of it/none of it? Has anyone else gotten a negative test, but still said hell with it, Gluten Free? Are there any good, well organized mega threads for stuff to not touch if you're allergic to gluten, especially lesser known things (to avoid oops moments)
  6. Hello Celiac friends, I am new to this world and I would really just love to get some advice and possibly some questions answered. I am 20 years old and I was diagnosed about one month ago. Since then I have been struggling to stick to my gluten free diet and also struggling hard to stay positive. Here are some things I have learned thus far: 1) Gluten hides EVERYWHERE. 2) Celiac Disease gets little to no recognition and I feel very thankful that I found out what I was facing before it caused more problems. 3) People without this issue, do not understand. Before I was diagnosed I genuinely thought I was going crazy. Out of no where I suddenly had no energy and had immense trouble getting anything accomplished, which is basically the worst case scenario if you're a junior in college. This new sickly feeling then grew into severe anxiety and panic attacks. Then came the never ending diarrhea and loss of appetite. It got to the point where I didn't want to eat at all. I had never experienced any of this before and it caused me to become massively depressed. Once I was diagnosed, everything seemed to make sense. I felt so ready to begin my diet and to return to my normal self. Well here I am, a month in, and I feel slightly better but not back to wellness. I am still extremely tired, and my brain still has trouble functioning. I am bloated all of the time and I also experience almost daily abdnominal pain. I am frustrated and I need answers. Sorry for rambling but it's hard not to when speaking on this subject. But here are my main questions: 1) How long were you on a gluten free diet before you began to feel well & happy again? 2) Is there a light at the end of this tunnel? 3) Is there anything I can do to assist my body in healing? 4) I am still experiencing mild anxiety, should I treat this as a separate issue or do you think they could be connected? This summer I am supposed to visit Europe for the first time (a dream I've had since forever) and I also turn 21. I would love to feel at least close to normal by then. I am young & I don't want this disease to keep me from living my life. Any answers or advice would be greatly appreciated. I hope when you read this you are feeling well and in a good place on your journey. Sincerely, Extremely Frustrated Human Being
  7. Lori HC

    Anger?

    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)
  8. 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
  9. 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?
  10. I was gluten free for about a year and feeling great, then I started eating twizzlers and wasn't really thinking about the gluten in them. I was started to feel off all the time. Then I got a really bad cold virus and wanted some warm chicken noodle soup and ate that for about 2 weeks and of course wasn't feeling well because I already had a cold. Then I just completely crashed one day. Started having extreme fatigue and weakness. Muscle pain. Stomach problems. Anxiety and panic attacks. I immediately stopped eating the noodles and went back to gluten free. I noticed that eating oats caused the same reaction. Now it is two months out and I am still feeling weak and fatigued. Other symptoms are: hard time sleeping, muscle pain, crying easily, panic attacks, reactions to almost everything I eat now. However it is gradually seeming to subside. Questions...Can gluten have a cumulative affect where the symptoms just keep getting worse the more you keep eating and eventually cause a crash? Can the symptoms last for 2-3 months or longer? Can oats cause the same reaction (the oats were gluten free)?
  11. I was diagnosed celiac just over a year ago and have been gluten free ever since. Recent follow up endoscopy showed significant healing of my gut. I've had virtually no GI symptoms (but that also wasn't my biggest symptom when diagnosed). The one thing that has gotten worse is my fatigue. I can sleep a full night and fall right asleep for a two hour nap with no problem. I feel I could sleep even more than I do. Recent blood panel showed a slight iron deficiency (I am now taking iron, though haven't seen an improvement) and a vitamin D deficiency that I have been taking 10,000 IU daily for the past three months. I also take B 12 (my initiative). I am not sure what to do at this point. GI doc said we will recheck blood work but my levels according to her were not all that low. Any thoughts on what to do next? Functional medicine doc? She also said my thyroid function looks fine. My only other theory is that I have taken an antidepressant for years that has a sedative side effect. I am wondering if now that my absorption is improving, the med is too strong and the side effects worse? Open to any thoughts here, including who to see next in terms of doc, questions to ask, etc. This level of tiredness does not feel normal. Also, I am 45 and female. Thanks.
  12. I have been gluten-free for 13 months since my Celiac diagnosis via blood test & endoscopy...like freakishly good about things. I'm a changed my makeup & hair products, google-the-crap-out-ofeverything-before-I-eat-it kind of compliant gal. Anyhow, I had Graves Disease and had my 7" long dead thyroid removed in 2010. I also have gastritis that was found during my endoscopy. My problem is that I feel like @#$* All. The. Time. From massively debilitating fatigue to an acutely high CRP. I just got my labs back and my B12 is near the bottom, as well as my D3, which isn't surprising as it has been raining for the past 9 months. lol I try to eat low processed foods, but have still put on 25 lbs in the last year! My triglycerides have dropped to like 70 and my overall cholesterol is 141....that seems to mean I'm eating properly. My TSH is low (.01) but that's normal when you don't have a thyroid. I'm on 200mg/day of Tirosint and 25 of Cytomel. My A1c and glucose are low, so no issues with being diabetic. I am a moderate exerciser, mostly walking and scuba diving..I did buy a punching bag but haven't used it yet. I suppose I could become a gym rat, but that isn't realistic for me. I have a very stressful job, that I love, and I travel a lot. 42 1/2, no kids and a great boyfriend, who is literally the most understanding guy ever! Unfortunately, the sex drive has become pretty much non-existant too. I hate to sound like a sob story, but the OCD control freak in me can't seem to "fix" me. Has anyone else had any luck overcoming all this? I am an insomniac as well, getting perhaps 4-5 hours per night, even when I have 10 hours to sleep. I use a mask, ear plugs, lavender oil on the soles of my feet, hot tub before bed, writing down my to-do list so I don't worry about it all night, Headspace meditation app (that cute-sounding British guy can actually put me to sleep!), drink chamomile, etc. Anyhow, there you go. I'd love to hear what may have worked for you. I'm tired of going to bed wide awake and waking up so tired I can't function all day. Love to you all! xoxo
  13. Hello everyone. I have only been gluten-free for two weeks now but I felt like by day 6 or so I was feeling decently energetic and okay. Now I'm two weeks in and these last couple days I'm absolutely exhausted, irritable, moody. I know this is super early in recovery but why would I have started to feel decent then bad again? Is it normally like a roller coaster, one day you feel good the next you don't? I know your body needs to heal so it makes sense that you would be tired. I guess im nervous about not being careful enough and glutenating myself and not even knowing it because I dont know what good feels like yet and never feeling better. I also notice lately my anxiety is crazy. I'm thinking this has to do with adjusting to my new routine in the kitchen. I think now that I know gluten is whats been making me sick I'm afraid of it. Is that weird? The other day there were crumbs everywhere in the kitchen and pasta left out with some on the counter from my roommate and I basically looked at it as if there was human feces smeared on the counters. I'm afraid to touch anything and I keep washing my hands nonstop. Is this normal? Does it go away when you get into a better routine? Sorry this turned into more of a rant about various things. Hope you can follow. Thanks guys.
  14. Hey guys. So I was newly diagnosed with Celiac last month and was recommended to this site by my doctor for your helpful guidance to those struggling with this diagnosis. I just had some questions about some concerning symptoms that I have been having that will not go away. Any help would be greatly appreciated. I am a 23 year old very active male. I have been gluten free for over a month now eating a very strict diet. I have had extremely fatigued muscles with shaking in the hands. Its noticeable anytime I try to do something that involves fine motor skills. Also I have been very exhausted with extreme hunger cravings, especially sugary item (Despite eating a high protein, veggie diet and eating more frequently than I have in the past). The shaking concerns me and I had my resting glucose levels and resting thyroid levels tested with negative results. I am at a loss at what is causing this and it is pretty scary at times. Anyone have similar symptoms that won't subside or have any idea of what is causing it? I also had my B vitamin levels checked along with calcium and they both came back normal. The shakiness is visible slightly and was brushed off by my physician. I just want to feel at least half way normal again as my social life and schoolwork have taken major hits due to feeling sickly.
  15. Hi all! I was diagnosed with Celiac Disease about a year and a half ago. My digestive symptoms cleared up quite soon after I began eating gluten free. However, I’m still struggling with fatigue and a few other things. Not sure if this is Celiac related or if something else is going on. I’ve been told by my GP as well as my gastroenterologist that if I’m on a strict gluten free diet I should basically feel like any other “normal” person. I’ve been noticing several people posting about continuing to have issues years after diagnosis. Is it normal for some symptoms to continue even after diagnosis and treatment? I realize I may still be in the gut-healing process but should I expect this to get better or is it normal to have lingering symptoms?
  16. Hi, I've been on a gluten free diet, v strict regarding cross contamination etc, for almost 3 years now. My antibody levels after being in the 80s or something went down to 6 and then down to barely detectable, my gastroenterologist is baffled as to why I feel worse not better. I never had any gastro symptoms ie nausea/diarrhea pre diagnosis, I went to my GP for extreme sleepiness, i'd sleep late in the morning, get up and then have to nap like an hour later because a wave of sleepiness would come over me and i'd feel like I needed to lay down or i'd pass out. After all tests came back normal I was tested for celiac as my mum has it. After going gluten free I thought my sleepiness would go away but no! Over the last six months things have gotten worse. I can't do housework or walk far without getting lightheaded and needing to sit down. I now have some morning or evening diarrhea (it's fine during the day). I've had heart palpitations but 24hr ECG and echo have shown nothing, and fatigue has become disabling. I've had to reduce my work hours and I still collapse exhausted after a four hour shift. I've had loads of blood tests (diabetes, thyroid, anemia etc) that all come back normal, also sleep apnea has been ruled out. I guess i'm asking if anyone knows what conditions could be caused by or linked to celiac? Other autoimmune disease etc? Or is it possible to be food related? I'm getting married in a few months and we've already had to scale back on the wedding day because of my condition. Doctors just shrug or say anxiety but I know there's something physically wrong
  17. Story starts when I was young, feel great. kindergarten, first, second, but slowly getting more and more fatigued every year. Top student, interested in everything, never sleepy. Always stayed up during nap time and past bedtime, and never had to study because I would pay so close attention in class. Genuinely excited most of the time, but then come the later years. Past second grade, everything felt slow, but fast at the same time - every day would go by and I would not be able to express much of an opinion about it. I slept through MOST of every single day, especially in school. I told my mom I felt like I had a brain tumor repeatedly, year after year, something was always draining my energy and productivity. Constantly distracted. I cared less and less about everything, every year a little bit more, and a bit more, more still until... I barely invited friends over, went to movies, left the house, etc. Too much trouble, WAY too much effort when I could just sit in a chair all the time and look at a screen without much work involved. Sounds like depression? Well, maybe. Problem is, it never stopped. I had some emotional events in my childhood, everyone does, but honestly I recognized and dealt with them very fast. I am a very positive person, and I always find both sides of a problem to look at because I know not everything is just bad or good for me, I have great parents to teach me how to deal with emotional stuff, and I'm a resident assistant at my current college I attend (junior year), so I help other students deal with these issues as well. Considering that, still, I have the SYMPTOMS of depression - anxiety, fatigue, sleeping all day, trouble waking up, apathy, EXTREME MIND FOGGINESS, etc. Doesn't check out to me. I tell a nurse practitioner about these issues that I feel like I have absolutely no reason to have, and she prescribes me Lexapro, just to try it. Well, haven't tried it yet. That stuff is pretty terrifying, as it can lead to even worsened depression and suicide in young adults, as well as ED and lowered sex drive, (which I really do NOT desire, especially considering I have a romantic interest right now) so I have held it off. My mother has mentioned she has really intense joint pain and she thinks she might have Celiac disease because the doctors cannot figure out what's wrong with her in any other aspect. I look it up, and there it is. Absolutely everything that is and has been wrong with me that I can't explain. Everything. When I was younger, I would have ridiculously painful, gut demolishing hour-long pains in the middle of the night - this went on for years. I and others couldn't explain them, they just told me to stop eating so much cheese. So, that night, we have a gluten free dinner. I wake up feeling like seventy-trillion bucks. Not a million - at least seventy-trillion. I haven't felt this good since kindergarten. I only had four hours of sleep as well, usually I require at least seven. I immediately get up, shower, eat a gluten free sushi lunch, (I was at the dentist getting a cleaning) get coffee, and then come back home. I have a project to do over winter break, and I had been kind of procrastinating on it as I always do, but not that night. Noooo sir, I hopped on the computer and within two or three hours of straight working (which I NEVER do), I got everything done I needed to. Usually that work would have taken me at least 6 hours, but man I was having FUN while working! Not a care in the world, just enjoying my process... that's weird for me. I don't usually do that. I don't usually enjoy doing anything work-wise. In fact, I never realized it, but I always had extreme anxiety while working. I didn't have any of that then, not a trace. I continue with my evening, and things only improve. I feel like I'm on cocaine, or at least what I'd imagine it to feel like. Seriously, I couldn't stop having fun! I didn't sleep that night, either. Not because I couldn't, I just really, really wanted to have more fun. I hadn't been that productive in... ever. I was so productive that I was genuinely scared of what kind of person I had become. Well, here I am today and after a few days of gluten free and also having tonsillitis (have had it for weeks, medicated), I'm starting to feel sluggish and foggy again. I have been eating out a lot, so perhaps cross contamination is affecting me getting my gluten-free meals, or maybe it's the tonsillitis, or perhaps I completely imagined the effect of eating gluten-free and I'm just bulls$#&ting myself. TL;DR: Ate a gluten free meal for the first time, all depression, anxiety, and fatigue went away the next day, but slowly going back to a sluggish apathy ridden me after a few days. Have no idea what's wrong, am I just fooling myself into having a gluten sensitivity? Either way, I'm going to contact my doctor tomorrow, hopefully she is familiar with it and can help me work through this without just prescribing me more antidepressants. Just really curious as to anyone else's experiences and if someone can identify with me in the feeling of having some sort of tumorous drain physically and emotionally at all times of my life? I didn't even know things could be this good, but now that I do I really don't want to go back to the old, horrible me. Sorry if it's too long, thanks in advance!
  18. Hi everyone, I've been reading this forum sporadically and have some questions of my own. I'm in my 40s and was diagnosed with celiac last December by biopsy and blood work after months of tests by my primary and then a gastro. My husband, around the same age as me, was dx'd with stage 4 cancer a month later, so admittedly it's took me longer than I'd have liked to learn about celiac. Now I feel pretty on top of my diet. I mostly make my own food - proteins and veggies, with some certified gluten-free snacks in the mix - and am pretty strict about what I will/won't eat at friend's houses or in restaurants (I prefer to go to dedicated gluten-free kitchens whenever possible). I'm doing okay on the diet, but still getting glutened every so often, usually when I let me guard down outside the home. I also periodically see my primary and a naturopath (who happens to have celiac!), but still, I have many questions if anyone would care to answer: -FATIGUE. I'm still so tired, fatigued so much of the time. My doctors blame this on the stress of my husband's diagnosis and my periodic trouble sleeping. But even during weeks where I'm sleeping enough (8-10 hrs a day), eating right, exercising as I can, trying to keep stress at bay, I'm still so bleeping tired. Maybe not when I wake up, but by late afternoon. Often my legs even feel weak/wooden. Has anyone else experienced greater fatigue early on after being diagnosed? This will pass, yes? I know I could cut out the sweets and that could help, but also, being a caregiver is hard and sometimes it's nice to eat your feelings between therapy sessions. -SYMPTOMS CAUSED BY FATIGUE? Sometimes I'll have other "feels like I've been glutened" symptoms if I haven't gotten enough sleep, though I'm trying so hard to sleep at least 8 hours a night these days. Hasn't happened in a while thankfully, but there was a point this summer where my insomnia was bad and my arms were achy and I had some crazy flank/back pain I'd never experienced before. For weeks. Doctor ordered me to sleep sleep sleep, taking Benedryl if needed. I did, and the symptoms went away, but weird, yes? Has this happened to you? I ask because I want to make sure I'm getting all strange pains tested to the full extent if there's a chance it's something other than celiac. I do sometimes still feel that strange side stitch after a CC incident. -SKIN PROBLEMS. I have had a smidge of eczema since I was a teen and it - and the dermatitis herpetiformis I've acquired with my dx - are out of control right now. I recognize the connection with stress, but also, has anyone found any great natural remedies for DH to stop the itching? I've tried so many useless ointments and medicated creams, a number of them given to my by a dermo months ago. I see my naturopath this week, but thought I'd ask here too. -MOSTLY gluten-free KITCHEN GOOD ENOUGH? My husband is supportive of my diet and mostly eats gluten free meals with me, but we still keep a gluten-y toaster for him and the gluten-y dog food in a corner of the kitchen and he still makes the occasional meal with gluten for himself on his own cookware (ravioli, pizza, mac n cheese, etc). Or sometimes I make eggs/toast and the like for him when he's too sick to move. Otherwise, we're militant about how we cook, which cookware we use, etc. He even has a kitchen nook off our den where he makes sandwiches. But sometimes I wonder if having two separate sponges in our shared-ish main kitchen is enough and I should just banish all gluten whatsoever from the kitchen. I can't be the only one with a mixed kitchen, right? How do you do it if you have a mixed-eating family? Thank you so much!
  19. all of my life I have suffered from migraines. Even as far back as a toddler. At age 15 I was falling alseep in class due to how tired I was and Bc my headaches were hurting me so bad. I recall every evening coming home, excited to lay in a dark room Bc there was never a day my head wasn't absolutely busting. At age 18 they began lasting 5 days and felt like my brain was on fire. At age 20 I began complaining of feeling like I was running a fever constantly, as well as still suffering from the migraines. At 21 my doctor prescribed a seizure medication that supposedly helps migraines. I was hesitant Bc I don't have seizures... So I waited months to try it, but finally caved out of desperation.It didn't help, it just made me stupid Bc I was unable to think clearly. At age 22 I was missing months of my life, laying in the dark, sweating, tossing and turning all with an ice pack on my head, since the headaches still felt like my brain was on fire. I would tell my doctor about this and I was told it was depression. I would say "I would not be depressed if my life wasn't like this." He still insisted it was my thoughts doing this to me. He later prescribed anti depressants. Nothing changed. I missed that entire year of my life. Totally debilitated by these headaches.. Except now they consisted of the room spinning. A nauseous feeling that felt like the worst food poisoning as well as cold sweats. I remember the night I prayed "God just show me what it is. I'm tired of praying to be healed just show me what it is." as fate would have it, I went gluten free on accident that next month. I remember unloading my groceries and realizing everything I had bought was gluten free and laughing about it. I had no idea what gluten even was ! Lol. So that was definitely an answered prayer ! 3 weeks of being unintentionally gluten-free I recall discussing w my mom that my headaches had pretty much subsided, and telling that I wondered if it had anything to do w the fact that I had quit drinking pop. Shortly after that, I ate something that contained gluten. I couldn't even finish it. I felt odd. My heart was beating fast and I felt that inner fever begin to simmer again. And the old headache I had once lived so long with, came back with a vengeance. I some how fell asleep, Still clueless that this was caused by gluten. the when I woke up, i was greeted with a feeling that felt like the worlds worst stomach virus along with food poisoning. When I say I puked... It feels like an understatement lol. I puked until I puked a bile/infection-like looking substance which smelled like infection too!! (Gross I know but, I have to be truthful) This attack lasted for around 25 hours or more. After wards it was like I had fought a war. then as I was laying there...it was like a light bulb hit me... "Gluten ! I ate gluten! what even is gluten ? " so I googled gluten allergy. And I was amazed !! I went gluten free immediately and sense,the Terrible migraine/puking episodes have disappeared ! Unfortunately I didn't know you had to be tested for celiac while you we're eating gluten, so I've never been able to be tested for it. Therefore I only claim to have the allergy. However I suspect it's celiac Bc so much more happens to me than just fatigue and brain fog. I nearly die. I am not exaggerating. I'm someone with a high pain tolerance. I've broke my back and walked home ! lol. But these attacks literally have me begging for mercy!!! I have been gluten-free for 5 months now. This week I was glutened twice ! so as you can imagine I'm a mess. The first time was from a little bit of gluten containing alcohol (Smirnoff was falsely advertised as gluten-free. Don't ever make that mistake of believing their website!!) you guys, I literally couldn't take care of myself. And This was 15 hours after drinking so it wasn't due to being drunk. Once again, I puked till I had nothing else to puke except for green/yellow infection. I puked almost half a small bucket full of that stuff alone! :/ My mom had to come take care of me and I am 23. I couldn't even go get myself a cold rag due to how dizzy I was. It truly feels like the room is spinning! The second time i was glutened, was two days after that. I assumed that all Soda was gluten free, by mistake .(I rarely drink soda, so I shouldn't have assumed that, but needless to say, I paid for it.) I took maybe 3 sips of mr. Pibb and felt that fire headache spread across my head. I immediately googled and found out its one of the sodas that aren't gluten-free. Just my luck lol. I didn't puke bile that time Bc I'm assuming I didnt consume enough for it to be that bad, thank God. But now my stomach doesn't want to hold food. I feel sooo worn out and every time I eat I nearly fall asleep. I did a liquid diet for a few days to let my gut heal but it's still thrown off. I feel so out of wack and emotional !! I've only been glutened 4 times in 5 months but the last two was this passed week. I've never been contaminated so close together but I'm telling you guys, I don't know what I'm going to do. I so badly want to be diagnosed with celiac so then Atleast I'm taken seriously by my doctor . But as of right now I just sound like a hypochondriac :/ thankfully my family finally believes me. But it still bothers me not to know for sure. I'm sorry if I bored you guys but I guess I just needed to vent lol. I was also wondering, do u all think I have Celiac or am I just gluten sensitive?? can gluten sensitivity be that intense? Thank you for taking the time to read about my story. I wish you all health and many blessings ❤️❤️❤️Kayla
  20. Hi There- So, It's been 3-years since I was diagnosed and unfortunately, It's been all downhill since. Symptoms seem to be multiplying, not abating. Most recently, I was diagnosed with the early stages of hashimotos and prescribed a low dose of tirosint, which has made me feel very spacey, non-functional. I'm wondering if the extreme fog is any indication of pre-diabetes (have had slightly raised blood glucose level, in the 100 - 110 range for sometime) or adrenal (raised ACTH) function? Anyhow, instead of trying to dig a little deeper, my endocrinologist recommended that I see my primary care physician. WTF? Is it so difficult for practitioners to pull-up their sleeves? While I have heard very good things about my endocrinologist, I'm disturbed that he is so willing to punt. This is is all new to me frankly, as up to 3-years ago, I rarely saw a doctor...which is maybe why I'm in this bind in the first place. Anyhow, I have been to numerous specialist, none of whom have been able to provide a top down understanding of what the heck is going on here. They all (maybe understandably) operate within their own little tranche. So, I'm thinking of seeing an integrative/alternative/naturopathic doctor(s)...hoping that they can diagnose and treat what the other practitioners have not. Thoughts?
  21. A lot has happened since I last blogged. There are obivous reasons for me being tired; I have two kids under the age of 3, I'm a celiac, I've got hypoglycemia...yadda yadda. There are not so obvious reasons; chest pain at night, ache down the arm, lymphnodes swollen up neck (Cat scan confirmed), noduel on thyroid (cat scan confirmed), scar tissue in left cerebral hemisphere (MRI scan). My only concern is the swollen lymph nodes. The experience with lymph nodes was non hodgkins lymphoma. I seem to be an angry bear when I eat or drink sugary stuff. My neck seems to swell up more too. I get a head ache or migrane or am generally not with it. I had an frightening experience the other night, I don't know how it's related to the majority of the postings, but I woke up 2 hours after sleeping and the bone in my forearm was numb. The skin, the muscle was normal but the done inside was totally numb. The are ached real deep, so I just kept moving it like it were a normal numb foot or hand experience. After about a while it got better so I laid back down. I had been sleeping on my stomach with my head turned to one side. I don't normally sleep like that. So...my diet has changed based on those responses. I'm cutting the sugar way down. The sugar I get is from the Silk brand coconut milk (original flavor). I eat fruit, have organic gluten-free corn flake cereal. I'm just really wowing you now aren't I. lol I sure miss sugar. But it does not make me feel better. Not at all. I'm taking: gluten-free Women's NutriGold multi vitamins Swason's copper supplements with vegetable glaze (glaze keeps me from throwing them up) EnzymeScience Intolerance Complex Country Life's Ginseng Supreme Complex Vitamin K supplement when I need it *I need to have a regular exercise. It needs to be every week so that my system has time to work out junk in my lymphnodes. Drinking water and stressing out around the house or sitting on my rear doesn't flush the system like exercise does. Note: it is overwehlming to talk to doctors about my health history. They ask too many questions, I provide too much information. Makes for a depressing day for both people. There is no instant cure. It takes time, experience, knoweldge and lots of prayer. "Keep showing me Lord, I don't want to fall behind. You are my Great Healer, you'll get me there at the right time. Amen!" With more thought to this entry; I'm going to look up some various things that could be linked to the experiences with sugar and the arm bone falling asleep as well as my exhaustion. There is a possibility that I have leukemia. I'm appearing to have a majority of the symptoms except the blood test for white blood cell counts and the bone marrow test. I've had a bone marrow test back when I finished cancer treatments at the hospital, they warned me I would need to have a bone marrow transplant if I had to do chemo again. No thanks. I'd like to do what I can that is provided here on the earth and trust God for healing if He desires to heal me. There could be greater reason for me to suffer and bear my cross than just "find a cure! panic..." that's just futial. What's the purpose of a story that's helps educate others and build their faith if everyone found healing from mankind in the hospital? Hospitals have not always existed, neither have doctors. God has. So let's utilize His healing power and seriously show up this world's view of "cure".
  22. I was just recently diagnosed with Celiac. I have low iron and vitamin D because of the Celiac. It is my understanding that even though I've been on the vitamins for awhile now that until my small intestine heals, I won't have normal levels. I have extreme fatigue which they have chalked up to the vitamin definciencies. Does anyone know of anything that can help until my intestine heals through my gluten free diet. I have four kids and I am a teacher. I have no time for no energy!!!
  23. Hi all. I was hoping you could help me decipher my lab results. I got tested for celiac (because of long-standing symptoms which I will post about separately) and the results were negative BUT the thing is I was on a gluten-free diet (to my knowledge): Deamidated Gliadin Peptide Ab IgG 0.5 EU/mL (0.0 - 4.9) Deamidated Gliadin Peptide Ab IgA 0.5 EU/mL (0.0 - 6.1) TTG IgA 0.2 U/mL (0.0 - 10.3) Anti-Endomysial IgA Negative (Negative - ) IgA 219 mg/dL (44 - 441) I guess my doc ordered it because I had experienced a week of really bad indigestion/heartburn, so maybe she thought I wasn't completely gluten-free. Does anyone know any details on these results? Like if the levels gear towards or away from Celiac? My numbers seem extremely low, suggesting that I am far from gluten-intolerant. Even if I thought I was gluten-free but eating traces of gluten, is it possible to get these results? Similarly, is it possible I was gluten-free but for some reason still got the indigestion/heartburn symptoms and thus the test was not accurate? What should be my next step? She told me to start eating gluten again if I wanted to do an endoscopy. Since starting on gluten, my mouth sores are back, I am as gassy as ever, and I am tired. Should I go ahead and do the endoscopy? How expensive would that be? I feel like giving the gluten-free thing another shot because I was feeling better before my indigestion experience. Any advice is greatly appreciated!
  24. First of all, I wanted to say hi! I'm a newcomer here (29f), pending my official diagnosis next week. Fingers crossed! During my time between "let's run the celiac test just to see" and "let's schedule a biopsy", I've done a LOT of reading and realized that this is the miracle diagnosis that I've needed for years. I've read that thyroid issues and celiac sometimes go hand in hand. I have a lot of possible thyroid issue symptoms (fatigue, cold extremeties, facial flushing, excessive sweating, memory loss, no libido) but my TSH levels have always been within range. Actually, all CMP and CBC bloodwork has been in range the past two years. No blood testing prior - no Dr ever suggested it. So my question is, if I get the celiac diagnosis, should I just give the diet time to work and see how many symptoms go away? When should I think about seeing an endocrinologist? Is celiac the cause of thyroid issues or vice versa? Are they separate? Thanks everyone! -Lisa
  25. Hi everyone. I'm a new poster here. I'm glad I found this place. I have not been officially diagnosed with a gluten intolerance. The last time I brought up testing with a doctor she informed me they don't do food testing, and it's highly unlikely I will find a place that will diagnose me with having an intolerance (?). So, I figured I know my body best, and I'll just eliminate wheat. I noticed about two years ago I was feeling dizzy, and nauseous. I had a headache all the time, and I couldn't concentrate. Pin that with sinus pain and pressure nonstop. I read about giving up wheat, so I tried. Fast forward to today, I decided last week it would be okay to have breaded food (Wednesday), 6 donuts (Wednesday-Friday) plus toast for breakfast on Sunday. As of today, I'm really feeling down in the dumps. It's been this way since about Tuesday. Zero motivation, brain fog, struggling to concentrate and stay motivated at work. The other night I was watching a TV show about people buying homes, and I seriously got emotional over this abandoned house that nobody seemed to care about anymore. I'm short tempered, and I get easily annoyed with my partner. As far as sleep goes, I can't. I wake up during the night, and usually use an OTC sleep aid to fall asleep. How long will it take for this to pass? I haven't had gluten since Sunday, I'm hoping I can feel normal soon again. I feel like I'm walking around in a fog, with zero direction and zero motivation. But, it's a double-edged sword, because when I feel that way emotionally, all I crave is bread/sweets. Any advice would be appreciated, just so I can feel like I'm not alone feeling this way. I am 100% committed to becoming more careful about my food choices. I cannot continue to live this way. Thanks so much. Lynn
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