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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Store.

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  1. Hi all---   I know this is long but I'm really grateful for any response even if you just skip to the end...   This question is about my colonoscopy results and upcoming endoscopy but here is a bit of background on why I am being tested.   I am a 21 year old currently in the process of testing for celiac disease. I exercise almost every day, drink plenty of water, and eat plenty of fiber. I have had serious constipation since December of last year (only going if I took a laxative and often not even then, so maybe once a week). Between March of last year and this past December, I had occasional constipation every few months and before March of last year never had constipation and actually frequently had the opposite problem, which my regular doctor thought was because of Lactose intolerance or anxiety (I first went to the doctor for stomach discomfort in 6th grade). That same March I also began having horrible panic attacks that became frighteningly frequent last December at the same time that the constipation really kicked up. My period also became irregular that March despite the fact that I am on the pill. Changing pills did not help. I followed a dairy-free diet for about 9 years before the constipation began, though I was never tested for lactose intolerance.  At the suggestion of a friend who has celiac disease, I tried going gluten free in February of this year and began to have BMs without any laxatives within four days of starting the diet. Within a few weeks my panic attacks had also stopped, and I seemed to be able to eat way more food than I ever had before and was even losing weight. I had always thought I had a really slow metabolism. What a great time that was for at least a little while. During this one-year period from March of 2014 to March of 2015 I also saw my doctor several times, but was always told that the digestive problems were the result of a panic disorder, not the cause and that I needed to relax. I saw a therapist and was prescribed Ativan---- which medication, btw, doctors then loved to say was the cause of my constipation even though the constipation came first. Anyways, the gluten free diet seemed to be fixing the constipation as well (not perfectly) until a few months ago (April). I then suggested to my doctor again that I might be celiac, but she looked at my arm and said that she wouldn't test me because I didn't have a rash. She told me for yet again to relax and eat fiber. Getting no help from her, I then started taking magnesium which really really helped for about a month (even though the poop was liquid and pretty much undigested) until a couple of months ago (May), when I got backed up again. I then cut out my daily packet of "gluten-free" oats. After that it felt like months of piled up BMs were pouring out of me every day for about a week. My panic attacks after cutting out oats have completely gone away, and as long as I take the magnesium (less now so it's not liquid) and eat gluten and lactose free I have a relatively normal BM every day.    Testing By now you have probably realized the issue with only being tested now, months after going gluten free. I went to a gastroenterologist about three weeks ago. She found blood in my stool and what she called a "pocket" in my rectum from straining. I got blood tests for all sorts of deficiencies and for celiac as well as a stool sample taken for parasites. No surprise on a gluten free diet, these all came back normal. About a week later I had an anorectal manometry (to test my pushing ability). The day after that I had a colonoscopy. Both were normal.   Here is my first question: About a week after the colonoscopy I was told that the biopsy they had taken was positive for celiac, and that I would need to come in for an endoscopy in two weeks. Is this possible? I have heard that sometimes doctors are able to reach the end of the small intestine (which my report said that they had) during a colonoscopy and to take a biopsy from there. I have also heard that only an endoscopic biopsy can diagnose celiac disease.   Here is my second question:  My gastro doctor knows that I have not been eating gluten for a long time and has never mentioned to me that I need to eat gluten before any of these tests. My endoscopy is in exactly one week. After my blood work came back negative, I tried eating gluten, thinking f*** it. I got a really bad headache and what felt like the worst sort of menstrual cramps, as well as a lot of gas. The small BM I had the next day was very painful, and I had only had a few whole wheat crackers. Either way I wanted to test what would happen if I went back to eating as much gluten as I used to and I drunkenly ate three pieces of white bread one night. The next day my voice was gone and I could hardly move. It felt like I had appendicitis-- I'm sure the alcohol was a contributing factor though I definitely did not have enough for it to cause this much pain, as I rarely ever have lasting hangovers. My hands were shaking like they used to after a panic attack and I thought I might be about to have one. After that little experiment, I decided I would eat gluten free even if the test results were negative. Two days of gluten-free eating went by and I was beginning to feel human again when I got the call about the colonoscopy and scheduled the endoscopy. Again, no mention of needing to eat gluten before the test. Should I eat gluten before the test? For obvious reasons I'm a little nervous about the idea. A few hours ago I ate about two pieces of bread just in case when I call tomorrow they say that I need to. Within two hours I was very gassy and began to get a headache (Can a reaction even happen that fast or is this all in my head?). Also, is it too late to eat gluten before the test? I did technically start last Thursday though it was only a few crackers a day until the drunk bread eating debacle on Saturday night, after which I had a two day break.
  2. Hello All! I am thinking to start weaning gluten back into my life. I went off it about a year ago (to help with intestinal issues) and 6 months ago my anxiety has sky rocketed almost to the point in which I do not leave my house. I also am tired all of the time. Vitamins do not work for me and I cant afford to keep supplementing all of the time anyways. (I'm 24 I live on my own putting myself through college). Prior to stopping gluten I did not have these issues. Just tummy issues. I tried eating gluten a few weeks ago and I had a mini panic attack that I believe I caused. I tend to over analyze and freak out over every little thing. Especially lately with this heightened anxiety any little twitch in my body is looming death in my eyes. I was just wondering if anyone had any tips as to how I can start reintroducing gluten into my everyday life without freaking out and making myself sick.
  3. IMPORTANT: I trust my doctor, I am willing to answer questions, but I want you all to know that where I am in the process of getting a diagnosis requires me to have an endoscopy- a positive blood test in my situation does NOT give me all of the information the doctors need. With that being said, here's my story...   This past Friday was the end of my eight week gluten challenge, a blood test, and another day in the land of waiting around for a specific diagnosis.    I am here to tell you that I am sick and tired of feeling sick and tired, but only one biopsy was taken at my endoscopy in the summer, so I get to repeat the process of another endoscopy on February 19th, 2015. However, there are a couple pieces of GOOD NEWS that I want to share with all of you.   1. I got my blood test results today and there is no question about it- I tested positive just like before. Why is this good news, might you ask? I was told that if the test wasn't positive "enough", I'd have to keep eating gluten until I returned to being positive so that I could have my endoscopy. Before, I had been five months gluten free, so the last eight weeks were awful physically, emotionally, mentally, and even socially. So I'm so happy to be headed towards an actual label of a diagnosis that I can DO something with to feel better.   2. I did NOT end up in the Emergency Room YAYYY  . ( There were several panic attacks, many bouts of stomach pain/problems, and my depression/anxiety skyrocketed during the eight weeks, fatigue was over the top, and this will continue to be the way it is until after the endoscopy because I MUST eat gluten to get an accurate biopsy/sample, but I'm just SOOO happy to have made it this far! ) 3. I am my own advocate for my health. It was April of 2013 that things first went haywire, but I will not give in or give up until I feel better and get a diagnosis!   Thank you for reading. Feel free to comment here or instant message me if you do not feel comfortable with posting to the public forum. I invite anyone and everyone to ask questions, partially because I enthusiastic about helping others in any way I can, but also because I need to pass the time until my endoscopy    Good luck to everyone on their own individual journeys~ Val  
  4. I have had strange health issues for the last 4 years. Unexplained rashes, food reactions (sometimes I react to everything that I eat- my lips get a rash and swell up and my eyes puff up as well….but then it goes away and I can never figure out what triggered it.  I'm always full of anxiety- I feel like I can barely breathe…so I can't sleep at night because I feel like my heart is racing. Apart from this I also have typical celiac gastro intestinal stomach symptoms and recently I find that my mind is just going crazy and I can't focus on anything. Does this even sound like celiac disease?  My doctor gave me a requisition for the test a few years ago and I never did it.  He said he really didn't think I had it so I never did the test.   I have decided to get tested now but stopped eating gluten 13 days ago prior to making that decision. (and a couple times during this period i accidentally ate soy sauce and a salad dressing that contains gluten) but I was starting to feel so much better!!.. I really don't want to do a 4-12 week gluten challenge. I've decided to do the home test (Biocard) and if it is a positive I will see my family doctor for further testing.  My question is.. how long does gluten actually stay in the system? After 13 days (almost) gluten free is it necessary to do the challenge? Does anyone have experience or insight into the Biocard test? I am on day 3 of eating gluten again and I can't take the anxiety that i'm feeling from (i believe) eating gluten.   If anyone has any input regarding the home test or advice on whether my symptoms sound celiac induced I would greatly appreciate it:)   Thanks      
  5. I am very new to the topic of being gluten free and the condition of celiac. After reading many posts on this site I am SHOCKED that so many of your stories sound just like me! Could it really be as simple as changing my diet to be rid of these terrible panic attacks, constant depression/sadness, and extreme ADHD? I cant remember a time in my whole life when I wasnt anxious about something! My mom says looking back she thinks she saw me have a panic attack when I was 2 years old. I have suffered ever since. I have been mis-diagnosed, treated wrong, & been on so many medications that my bathroom cabinet looks like a pharmacy. My anxiety was so bad I dropped out of high school. I got a little better and got my GED and continued on to college. Unfortunatey, I have only completed two semesters of college in 5 years. Basically anxiety, depression, and ADHD have ruined my life. I take a slew of medicines every day and night but sometimes they help and sometimes they dont at all! I am still looking for hope and a cure. From reading these posts and doing independant research I do NOT think that I have Celiac. I am still going to get tested for it. I just dont have hardly any of the symptoms. Is it possible though that alot of my anxiety and depression and ADHD are from an intolerance or allergy to gluten? Should I just try a gluten free diet to test? Is there a particular diet I should follow? Are there any books that are helpful?   Please post as soon as possible... I am desperate for some relief!   Thanks for all of the insight into this!