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Found 18 results

  1. Hello everyone, So, a little bit of background I suppose. I've been perusing this site for a long time now trying to find answers. I've been suffering from random extremely itching patches on my feet. Nausea in the morning (or throughout the day). Brain fog, forgetting things, muscle aches, joints constantly cracking and other intestinal issues. I also suffer from a mysterious short of breath symptom that comes and goes. It feels like I can't take a full breath in even though I'm getting enough oxygen. This has been tested and no one can figure out what is causing it. I recently got the celiac panel done to see if I do indeed have it. However, I'm worried that my doctor does not know much about the disease. I'm hoping that someone can help me with my test results. DEAMIDATED GLIADIN IGA 9.8 units 0.0 - 19.9 units SPECIMEN APPEARS SLIGHTLY LIPEMIC. Negative 0 - 19 Weak Positive 20 - 30 Moderate to Strong Positive >30 DEAMIDATED GLIADIN IGG 3.5 units 0.0 - 19.9 units Negative 0 - 19 Weak Positive 20 - 30 Moderate to Strong Positive >30 Gliadin IgA 11.3 units 0.0 - 19.9 units Negative 0 - 19 Weak Positive 20 - 30 Moderate to Strong Positive >30 Antigliadin IgG 159.9 units 0.0 - 19.9 units Negative 0 - 19 Weak Positive 20 - 30 Moderate to Strong Positive >30 TISSUE TRANSGLUT.IGA 7.6 units 0.0 - 19.9 units Negative 0 - 19 Weak Positive 20 - 30 Moderate to Strong Positive >30 TISSUE TRANSGLUT.IGG 1.9 units 0.0 - 19.9 units Negative 0 - 19 Weak Positive 20 - 30 Moderate to Strong Positive >30 IGA IMMUNOGLOBULIN 280 mg/dL 87 - 352 mg/dL So, as you can see, my IgG is sky high according to this test. Is this celiac? Or am I going to have to keep looking for an answer? Thank you so much for any help. I'm getting desperate after years of searching.
  2. I have had a multitude of symptoms for an extended period that have seemed to get worse throughout the past year including: constant fatigue, severe migraine, inability to concentrate, "brainfog," unmotivated, poor mood, diarrhea/constipation, hemorrhoids, etc... for about 6 months I eaten very little gluten. When I eat no gluten for about 1 week, nearly all of these symptoms go away until I eat bread or oatmeal or other gluteny foods. I had a blood test for IgA, TTG, IgG, and TTG IgG Quantitative; all of which returned a negative Celiac diagnosis. BUT, I hadn't eaten gluten for about 2-3 months before this test. I also had an ultrasound which showed a prominent gall bladder and have bilirubin levels at 2.6 with a standard range of .2-1.3. I am seeing a GI next week seeking answers to try to feel normal again. Do you think I may have Celiac, or is it worth testing? Testing would likely mean going on a gluten challenge... Any insight would be very helpful!
  3. Alexandraleighclark1

    New and need advice

    I am very new at this, sorry if this is to much tmi. About 3 months ago i started having problems. At the time I had no stomach pain just direah anything i ate went right through me. I did stool samples sent them in and all came back fine. He then diagnosed me with ibs. So i did some research and took a few things out of my diet but was still having problems. At one point I literally had a blow out. I was stumped had no idea what to do. I felt lost I took gluten out of my diet 100%. Its been about two months being gluten free. Now if I accidently ingest any sory of gluten my body goes in attack more, throwing up and direa until its out of my system and then im completly fine. My labs came back fine for celiac but he said that could be because i've been gluten free so it wouldn't show in the labs. He said I could do a scope but the only treatment would be a gluten free diet and im already doing that, so there isn't a point really. we are thinking celiac because my body goes into complete attack mode if i eat any sort of gluten. Is this how it is with celiac is? Before all of this I used to experience extreme gas issues to the point of throwing up. I'm just lost a little bit. Do I have to take supplements? If anyone has any advice it would be appreciated.
  4. Hey, so I have been diagnosed a year now this aug, this part month i have had swelling in my throat, I thought I had scratched it trying to get a popcorn kernel out (also very bad choice) but it just got worse. Every time I eat it feels like it's swelling till I can barely breath. It's been a few days now where I have basically had water or a snack here or there some soup or very soft fruit. I went to clinic, hospital then finally family dr who sent me for an ultrasound since she thinks it is a cyst or nodule on my thyroid. She also gave me meds for silent reflux but they havnt dont anything, can barely get them down. Has anyone else has this?? Help please.
  5. I received my gene testing results back. I've been googling and trying to understand, but I'm lost. Would really appreciate ANY help!! HLA-DQA1 1 HLA-DQA1 3 HLA-DQB1 301 HLA-DQB1 603 It says I was negative for DQ2 and DQ8, so no celiac. Just trying to get help with these numbers since my TTG IGG came back positive for the antibodies, even after going gluten-free for almost a year, and only eating a little bit of gluten for a little while before the test. I keep seeing the B1*0301 come up in results that show interesting stuff. Is that the DQ7? At least I think that is what Wikipedia says it is? I'm trying to figure out my "type"? This stuff is losing me here! Please help! Thank you!
  6. So I am sixteen, and for the past year or so I have been experiencing some very strange things with my body. (And yes I know i'm going through puberty and change is normal.) But the things I have been experiencing are not just the typical growing up things. I have had a consistent rash on my upper back, chest and thighs, (also having major breakouts on my back and minimal on my chest. I assumed it was just acne although it is itchy which I don't think is normal for just pimples...) And a few weeks ago i was kind of freaking out because when I went to the bathroom, I had almost like a fatty liquid with my stool! (Which lasted for a couple of weeks and still comes back every once in awhile). I always feel very bloated and constipated and I have the WORST pms. I ended up in the emergency room twice from passing out after standing up and feeling dizzy, I stopped growing around age 13 and am by far the shortest in my family. I didn't think that it was related until i was looking up symptoms, (I am 5'2, the rest of my family range from 5'6 to 5'11). I went on a juice cleanse several months ago and felt soooo much better and my skin cleared up, but that only lasted a couple of weeks and since going back to eating regular food containing gluten all of my old symptoms have come back. Should I get tested?
  7. I know there are thousands of these topics out there, but I'm yet another confused and in pain patient seeking as much help and guidance as I can get from you kind folk. My storyline is this (and I'll bullet point for ease) - 2012 living abroad in Nicaragua for last 5 years- begin feeling stomach pain, gas, severe diarrhea. Foods like broccoli, spinach, coffee, are major irritants. - 2013 - Immigrate back to US - symptoms continue but increase in frequency - 2014 - crappy health insurance and can't get tested - 2015 April - Initial blood test = Celiac panel- my value 98 (std rng 0-19), TTG IGA- my value 74 (std rng 0-19), Gliadin Antibodies IGA - my value 9 (std rng 0-19) - 2015 Sept - Endoscopy - negative villi atrophy, Colonoscopy - without abnormality - 2015 Oct - Begin gluten free diet, 98% faithful. Diarrhea seems to lessen. Feeling of increased energy. - 2015 Nov - Additional blood work and parasite tests ; Cryptoporidium and Giardia Antigens : Negative, TTG Ab IgA = 26 (std range = <20), Gliadin Deamidated IgG Ab = 29 (std range = <20) - 2015 Nov-Dec - attempt eating a whole wheat italian coldcut wrap for lunch to test theory. Immediate pain in stomach, and symptoms for 3 weeks. So my questions are these: How important is the diagnosis? Do these sound like celiac elements or simply gluten sensitivity or neither? How can the TTG have been so high without villi atrophy? Is there something else I should test for or seek out?
  8. Hi everyone, I am pretty new to my disease and have been gluten free for about 3 months. I am discovering how sensitive I am, and I am finally feeling more adjusted. I haven't been accidentally "glutened" for around a month, which is great, but last night I had an awful reaction to some See's Candy Bridge Mix. They are supposedly gluten free, and I even called to ask for the ingredients, and they are indeed gluten- free. Obviously there is a lot of chocolate involved, milk, cream, corn syrup, molasses, egg, some soy, however none of these ingredients I have reacted to before. I used to get very bloated with dairy, but that has passed now that I have developed celiac. Do you think this could be a sign of cross sensitivity? Have any of you had a horrible gluten like reaction to a food that contained no gluten? I am feeling a little discouraged, because I was doing so well. Maybe its the corn syrup or corn starch? so confused
  9. Celiac.com 11/11/2015 - If you ask me, it doesn't seem that far-fetched that some people who do not have celiac disease could still have adverse reactions to gluten. However, actually proving that scientifically continues to be challenging. Take the case of the research team that recently conducted a double-blind, placebo-controlled, cross-over, gluten-challenge trial of patients with suspected non-celiac gluten sensitivity. The team wanted to try to get an idea of the number of self-diagnosed patients with non-celiac gluten sensitivity. The team enrolled 53 women and 8 men referred to two Italian centers between October 2012 and November 2013 for suspected non-celiac gluten sensitivity. The subjects were randomly assigned to receive 4.375-g gluten or rice starch per day via gastro-soluble capsules for 1 week after a 1-week run-in period, and followed by a 1-week washout period and cross-over to the other group. The team chose rice starch as the placebo because it is "the most readily absorbable of the complex carbohydrates, and thus less fermentable, in the intestinal tract." They used a daily questionnaire to chart any changes in overall symptom scores, and conducted analysis with a per-protocol approach. A total of 59 patients completed the trial, while two withdrew due to "intolerable symptoms." Overall, one week of gluten consumption increased overall symptom severity compared with one week of placebo (P = .034), including abdominal bloating (P = .04), abdominal pain (P = .047), foggy mind (P = .019), depression (P = .02) and aphthous stomatitis (P = .025). Perplexingly, the team found that "most patients showed approximately equal degrees of overall symptoms with either gluten or placebo, although overall symptoms were worsened significantly by gluten in comparison with placebo." Got that? Significant numbers of the subjects reacted to the placebo. The short conclusion is that these results "do not represent crucial evidence in favor of the existence of this new syndrome." However, and it's a big however, the results aren't quite as clear as they might appear. In an accompanying editorial, Benjamin Lebwohl, MD, from the Celiac Disease Center at Columbia University, and Daniel A. Leffler, MD, MS, from Beth Israel Deaconess Medical Center write: The "overall positive result was driven by a minority of patients, whereas the rest had no (or at most a modest) worsening compared with placebo." They add that: "These findings can be a Rorschach test of sorts, in which the viewer draws interpretations that are based on his or her prior beliefs about NCGS. … It is therefore not surprising that this trial, like its predecessors, seems only to contribute to the uncertainty about NCGS." So, basically, there's no clear word on the existence or non-existence of non-celiac gluten sensitivity, or on the number of people who might suffer from it. Stay tuned for more studies, and more information as researchers attempt to sort it all out. Source: CGHJournal.org
  10. Has anyone else been diagnosed, but not had malnutrition issues? I am also extremely confused about the excessive bruising and severe muscle cramping. All my lab tests came back normal. any advice?
  11. Hello everyone! I'm back after a year of still no answers. Finally seeing a new group of doctors since I recently got a new job. My new primary doctor thinks I may have celiac and wants me to get another opinion. Going to see the new gastroenterologist next week and I can't wait to go. I'm hoping to finally get some answers to the issues I've been having. Although it will be a huge lifestyle change I think I will be relieved to know that everything I'm feeling just isn't in my head. Doctors are so quick to tell me all of my symptoms are stress-related. Here is a little background about me! May of last year I started realizing I was loosing my eyebrows (Still haven't grown back!!) - initially thought it was my thyroid, all levels were within range though. I'm also not loosing them on the outer corner of my eye but more towards the inner corner (Doesn't really matter I'm sure). Tested my Iron and my ferritin was down to an 8 when in previous years it was around 200 something. No bleeding episodes and my menstrual cycles are light. I started researching hashimoto's and iron deficiency and started seeing stuff about celiac. In the lab I work in I was tested for tTg IgG/IgA, Gliadin IgG/IgA and Total IgA. I was not deficient in IgA and I'm not sure if the testing for gliadin was deaminated or not (don't believe it was). I don't have my exact results for the tTg IgG/IgA or Gliadin IgA but I remember they were within normal limits, but my Gliadin IgG was 3.59IV and a positive was anything greater than of equal to 1.1. I also had the genetic test done and I was negative for HLA-DQB1*02 and HLA-DQB1*03:02 but I was positive for HLA-DQA1*05. I know this isn't diagnostic in itself for celiac disease. I had a endoscopy and the report read as follows: A. Duodenal mucosal biopsies with no significant microscopic abnormality. No diagnostic histology features of celiac are appreciated B. Gastric antral and oxytocin mucosal biopsies showing chronic gastritis. Reactive foveolar hyperplasia is present. H. pylori is negative The material present is partly tangentially sectioned. The villous crypt ratio is about 3.5. There are intraepithelial lymphocytes but they don't seem to be significantly increase in most of the villi. There are inflammatory cells in the lamina propria including plasma cells and lymphocytes with an occasional germinal center. They are normal to slightly increased in number. No histologically diagnostic features of celiac are appreciated. Really hoping this new gastro will shed some light on all of my questions... Trying to eat as much gluten as I can tolerate before going for testing. I previously did not experience any GI symptoms but now I have been experiencing stomach pain (not everytime I ingest gluten but occasionally) The pain comes in waves, the pain builds up then subsides..I'm okay for a little while and then it happens again. Keep your fingers crossed for me!!
  12. DiamondWoman

    Does It Get Better?

    Hello everyone I was diagnosed as gluten sensitive a week ago. This was not totally a surprise as 3 of my aunts, my mother and my sister all are gluten sensitive as well. The biggest issue I am having currently is I can't find gluten free food to fit my lifestyle. I work 3 jobs 7 days a week and am out of the house from 7:30 am to 10:00 pm. As a result I am always eating on the go, in my vehicle going from job 1 to job 2. Every kind of bread I have tired either tastes like cardboard or disintegrates by the end of the day leaving me unable to eat the sandwich I had made for myself. And because I'm driving foods that need 2 hands are not an option. When I get home at 10:00 and then cook (normally just warming stuff up as I bulk cook for 2 months on my 1 day off in 8 weeks) for myself its 10:30 at the earliest I am eating dinner and my stomach starts hurting from eating so late. I know its not the food cause everything is gluten free and I have eaten it at my parents house with no problems before. I need some realistic suggestions of food items that will make my life easier. No i can't give up a job, no I can't cut back my hours. I already bulk cook and make lots ahead of time. I am deathly allergic to nuts and peanuts so most gluten free snack food is not safe for me. What I need is gluten free fast food that you can eat with 1 hand (realize this is probably a pipe dream but I can wish right). Has anyone else done gone gluten free with a lifestyle like mine? If there is please I need your advise, my family can't help as they all work 1 job Monday to Friday 9 to 5. Thanks everyone, sorry I was venting but I'm at a loss for what to do and getting really frustrated (to the point of tears) as a result. Diamond Woman
  13. Hi all. I am in desperate need of a friend who understands this, hoping you can help. I find it so challenging to talk to my husband-friends-family because they have NO idea what I am really talking about. In June ish of 2013 i was sick for about 2 months with diarrhea, weakness, 5 lb weight loss (which is a lot for my frame) and just the general inability to feel i was absorbing any nutrients from my food. I was also experiencing bad joint pain in my neck and shoulders that would never go away, just constant spasm. I explained to my doctor and she recommended a blood test for celiac and that even if the test is negative i should try a gluten free diet. The test was negative and i started the diet anyways. I felt GREAT finally didn't feel like a 90 yr old when I woke up in the morning. so i went 30 days without and had planned my challenge day for the local beer festival. I ate a big sandwich, drank a lot of beer etc.. and the next day i was fine! So i had a couple brownies at another party. The next night was brutal, i felt like i had the flu- full body aches, insomnia, vomiting, nausea, the works. I have since intentionally glutened once with a tiny bite of bread (about a month later) with much worse reaction and then never again on purpose though I have had a couple slip ups. In January 2014 I requested a genetic test be done for celiac- and i won! I got it done and it came back with I think DQ 2 which is considered low risk. my doctor who has somewhat of a language barrier didn't really say i have celiac but didn't really say i didn't. she just said to stay on the diet. Just about a month ago I asked to see a dietitian and when i came in she asked when iw as diagnosed celiac.. I said.. I wasn't!? She turned the computer screen and showed me that BOOM right there on the screen it says "ongoing health conditions : Celiac Sprue: I talked breifly with my doctor and all she said again was your gene test came back low risk. OK SORRY FOR ALL THAT BACK STORY! but now i am still having weird issues and i am kind of depressed about this whole not being able to eat anything, i have gotten sick twice from scrambled eggs at the hotel i am staying at even though they told me they are just eggs. (like bad weird greasy hard to flush stools- one instance that i almost pooped my pants at IKEA) My husband says i need to get an official diagnosis to know whats going on, that maybe i am allergic to something else. or that there is something else entirely wrong. I am pretty convinced that this is it based on my symptoms but who knows. What would you do? I honest to god am terrified about doing a gluten challenge. I am a terrible mean monster and in so much pain.. i just don't think i can bear it. HELP!!
  14. Hi all, I am new to this forum and am new to celiac as well been gluten free for a year now. In that time i have had a couple of glutenings (2 as a test and one accidental) and recently I realized after gradually feeling crappier and crappier for a month (as in all my muscles flared up, previous injury killing me, irritable, anxious, emotional/depressed) when I realized it was this big container of taco seasoning i bought at Sam's Club (Tone's taco seasoning IS NOT GLUTEN FREE). Totally my fault i didn't look at the label. Anyways, after feeling pretty crappy and one bad hangover I was even sicker. Nauseous every day, felt hungover even though i wasn't, couldn't drink any alcohol (which is very unlike me) and still with the irritability and what not. Just not good and not myself. That continued for about a week and now i am mostly better but still experiencing muscle twitches, spasms, generally very uncomfortable and feel like i have to massage my arms, neck, shoulders constantly for relief. I really screwed myself up here... slowly glutening myself at least once a week for 8 weeks. Has anyone done this before? Not just a one time incident but a repeated exposure? When will i stop feeling so WEIRD?! I am wondering now if this has really flared up the celiac and i am not absorbing my vitamins and that is perhaps whats causing me the muscle issues. ANY thoughts, advice or questions welcome. Thank you lmj
  15. Had positive DGP IGG... 3.59IV positive is GT .90 Biopsy says A. Duodenal mucosal biopsies with no significant microscopic abnormality. No diagnostic histology all features of celiac are appreciated. B. Gastric antral and oxytocin mucosal biopsies showing chronic gastritis. Reactive foveolar hyperplasia is present. H. Pylori is negative The material present is partly tangentially sectioned. The villous crypt ratio is about 3.5. There are intraepithelial lymphocytes but they don't seem to be significantly increased in most of the villi. There are inflammatory cells in the lamina propria including plasma cells and lymphocytes with an occasional germinal center. They are normal to slightly increased in number. No histologically diagnostic features of celiac are appreciated Opinions anyone??? I'm confused see. Lymphocytic gastritis can be associated with celiac plus my positive blood test!! Ahh maybe I'll just give up the gluten and see how I feel
  16. Hi Guys and gals, First time! First off I want to say Life hasn’t been much fun for me at all. For about 3 years I have so many days, with upper abdominal pain, recently weight loss, fatigue, mouth pain. Dark stool, green stool, brain fog and minor times of diarrhea. SO yeah it hasn't been fun. I have not been taking seriously enough by doctors and was written off for chronic gastritis (though i never felt the symptoms of that gastritis). So I been looking up on a bunch of stuff (some are quite SCARY!) But Over the last week I really have been reading on Celiac, and it hit me that this is what I may be going through. So I read about this gluten free and in the last three days I haven't eaten gluten(only gluten free food water fruits and veggies) and I felt a lot better today compare to what I have been. And abdominal pain seemed to have claimed a good amount. But I know I need to get diagnosed so I have an appointment schedule tomorrow and a different GI schedule on Tuesday. I'm going to tell the GI to test me for celiac. So I want ask since it's only been three days should i eat gluten today and go tomorrow and the test should be reliable or should I eat gluten for the nest four days and get tested Tuesday? I ask because I keep reading that you actually NEED to be eating Gluten to be tested (which sucks because I hate feeling like crap ) Lastly, how much Gluten should I eat? I'm so glad I found this place and I hope this can put my issues to bed. Thank You guys for reading!
  17. I am so confused and need help!! I had a biopsy done on March 4, 2013. Immediately after the procedure, the Doctor came in the room and mentioned that he thought it could be Celiac Disease but wasn't positive yet. He took some blood and sent me home. On March 13, 2013, I received a phone call from the Gastroenterologist office confirming that I do have Celiacs. The nurse told me that I would need to begin a gluten-free diet immediately and she mailed me some more information on Celiac Disease and eating gluten-free. I stopped eating gluten that day and even went as far as purchasing gluten-free makeup/shampoo/lipstick etc. I went in for a follow-up appointment with my Doctor last week and shortly after walking in the room he said, "From your biopsy results I think you MAY have Celiacs. Do you know what that is?" I WANTED to say, "Yes, I know what that is because your office told me I had Celiacs so all I've done for the past month is read about it!!" But I just said that I did know what it was, and I mentioned that they had called and confirmed that I had it. He said that IF I do have Celiacs, it's only a "tiny bit" because it only partially showed on my biopsy and he wants to run blood work (he didn't mention the blood he took in the hospital) to "confirm" whether I have celiacs or not. He told me to go back to eating gluten for one week and then I will have the blood work done that will confirm this possible diagnosis. Here's my issue. Everything I am reading online says that blood work is done FIRST, and that the only certain diagnosis is biopsy. Is this true? I've also read that if you're following a strict gluten-free diet, it takes way longer than one week eating gluten for anything to show up in a test result confirming Celiacs. I am really frustrated with this Doctor and his office. Why did they call and say I definitely had it and to go gluten free immediately if my test results were inconclusive? I started eating gluten again the day of my appointment, 4 days ago, and I feel so sick. All of my symptoms that had gone away since going gluten-free are back. I'm going back to eating gluten-free and I'm going to call the Dr. office on Monday to see if I can get some better clarification. Any advice/thoughts would be greatly appreciated!!! I am so lost.
  18. Hello world, This is my first time ever posting, so bare with me as I make it through the learning curve. I'm a 26 year old female, with symptoms starting over 10 years ago. It started with terrible pain and nausea eating Tex-Mex. Not gassy pain, but someone is slicing open my stomach and rubbing broken glass around kind of pain. It took me years to figure out it was the avocado in the guacamole. Fast forward 5 years and I start to have the same reaction to eggs. After 5 years of not eating eggs, i'm baffled by the blood test that came back negative for a food allergy. What is causing my body to react that way? I've had preliminary blood work, but the only positive results for celiac was the igG gliadin. Does this indicate anything? igg- 33 (30 is cut off for "normal") iga- 4.5 (5 is cut off) iga 17 (20 is cut off) i think this is the tissue one I'm scheduled for an endoscopy and colonoscopy, but that wont be for a few weeks. More info that may or may not be related. Most of the symptoms have been around a while: Anxiety/depression (mostly severe anxiety) add/mental fog patch of unidentifed "stuff" on my face. (ive always assummed it was a dry patch that comes and goes, but it is very smilar to that of lupus's butterfly skin condition on face) dry burning eyes and need of glasses insomnia (no matter how tired I am) fatigue (no matter how much sleep I get) loss of weight and appetite cold hands and feet (all the time, i can be sweating and they are still icicles) mild fevers milder, constant, lower back and gut pain sometimes pain is sharp in my gut, and i'm finding blood in my stool (this can happen for weeks at a time) sometimes after I eat, I have to go to the bathroom right away. do not pass go, do not collect $200 Mother and sister have autoimmune problem with thyroid and hashimotos, and both grandfathers with colon cancer I was gluten free for 24-48 hours before i realized i needed to keep with it for testing, and i was ravenously hungry and fell asleep before my husband, which could be considered a small miracle. mind over matter, or actuall helpful in such a small time frame. I'm also being tested for lupus, and i'm guessing they'll know If I have an IBD when I get my Scopys done (irritable bowel disease) I can find a lot of my symptoms on a few different diseases/autoimmune lists, so i'm more confused that ever.