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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. For Additional Information: Subscribe to: Journal of Gluten Sensitivity


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  1. I also included strict reduction in eggs and milk (to make things easier on my system right now). However, it seems to be gluten that causes a huge huge reaction. Eggs might make my stomach hurt, but not nearly as miserable as when I have bread-based products. After the testing phase, I went strict celiac diet. The itching on my legs, back of my legs, hips and spots along my body were INSANE!! Waking me up in the middle of the night. I was going mad for about 2 weeks afterwards. Just when I thought it had stopped, it would flare up again dramatically (and I would realize I misread a label or something). Since becoming really strict, I've had no more horrendous itchy spells. No more new lesions on my lower legs or hips No more waking up scratching. Best of all? My husband noticed a difference. He was very supportive from the beginning. But as he noticed I was staying awake, that I wasn't scratching, that I wasn't curled up in the passenger seat after going out to eat with friends, he fully agrees I'm better now than I have been our entire relationship. My moodswings have calmed down. My energy has absolutely skyrocketted. My migraines have stopped completely. My depression symptoms have stopped, which got scary sometimes. I haven't thrown up! And... (lets get graphic here)... I haven't almost pooped myself in a while LOL! Cause you guys needed to know that! But it's true! No more mad dash in the middle of the night. I started crying in a restaurant the other day (just quietly to myself) and my husband asked me what was wrong, did I eat something wrong. I had to tell him I didn't realize how much feeling yucky had robbed me of wonderful evenings with him. That up until recently, going out to a restaurant had always left me wondering how long afterwards I would 'get hit' and have to go to bed. Last night, after eating at The Keg (with an amazing waitress who knew what celiac was, and the manager was incredible) I was able to stay up with my husband and play video games instead of being sick in bed. I don't care if I don't have a 100% diagnosis. I know in my heart and soul that this is what was making me sick my entire life and I will absolutely never ever go back. Ever.
  2. Update: According to my doctor, all tests came back "Normal". However, I will be going down to the office today to hopefully pick up a copy of the labs for my records. I kind of figured as much, as it was not 3+ months of glutening myself. The blood test was done after 2 months, because I just couldn't do it anymore. It was getting bad enough to start missing work again, which is not worth it just to get a positive on a test. I have since returned to my gluten free diet after the blood test. I know I can't get a positive from this point, but honestly, I couldn't handle it. My brain fog returned, my depression symptoms returned, joint paint, my weird itchy rash /lesions on my legs, hips and abdomen, crippling fatigue and abdonimal pain that would leave me sweating in a fetal position on the bathroom floor. Nothanks. I'm still keeping my naturopath appointment for Nov 19th, since she's specialized in a variety of 'allergy' and gastro issues. MD told me that, based on my symptoms and the 3 years of documentation, he would very strongly suggest just going gluten free and forgoing anymore testing. He said that he strongly agrees that it may be Celiac, but that if I'm okay just going gluten-free, skip the ordeal and just switch. Another avenue we discussed briefly was getting in with a dermatologist to get my lesions tested. However, there are two problems: 1.) The rash only appears when I do BIG doses of gluten, and the idea of doing that makes me almost want to cry. And even if I have large doses of gluten for a while, it doesn't always 'flare up' on cue. Sometimes it's the day after. Other times it'll show up several days later with a vengence. 2.) No dermatologist office I've called is familiar with DH or how to test for it. The local Celiac association doesn't have any references either and told me they can't recommend specific doctors due to legal reasons. I'll try to pick up a copy of my labs today so that I can check them out and hopefully share them here. At least I can officially say that my MD "strongly suspects a gluten sensitivity or Celiac". So, at least I have someone officially on my side.   What will I do next? No idea. Right now I'm just thankful I can finally stop forcing myself to eat bagels and sandwiches LOL
  3. Thanks ((((((nvsmom)))))) Update: Today I went to see this new MD. Apprehensive. So I wrote out three pages worth of notes to make sure I didn't miss anything. Wrote down the tests you had all recommended and a few other things. Walked in, he asked what brings me in. I tell him 3+ years ago I began tracking my diet due to symptoms, that going gluten-free for 1yr resolved nearly them all. Reintroducing it has seen a return of symptoms, so I think it may be time to get tested for Celiac. I left it kind of open-ended, seeing what he was going to say. I didn't even really use my notes, just a few minutes of listing off things I've noticed over the years. He responds: "Sounds like you are gluten sensitive, if not Celiac. We will send you for all of these tests, and if they come back negative, I am still going to say you should eliminate gluten from your diet as these tests aren't always 100%. Based on your symptoms, it's obviously not good for you. And the tests sometimes don't catch all Celiacs. Lets get you checked out" So he orders up blood work and asks if I'm okay with getting a whole bunch of things checked at one time. Well, absolutely! Hands me the lab order and says he'll talk to me soon about it. Sends me on my way in less than half an hour. I left the office and sat in my car and cried. Fighting for years with other doctors, and this one actually 'gets it' within minutes. As sick as I've been trying to do this gluten challenge, I'm so so glad I did.
  4. It is harder than I ever imagined :-( I'm supposed to be seeing my naturopath on Nov 19th, but I honestly don't think I could make it that long. My symptoms are bad enough that they are starting to cause me to miss work again because I can't stand up. So I called up an MD that is taking patients in our local area, and I'm just going to go in and lay it on the line. Send me for blood tests, even though it's only been 1.5 months at high doses of gluten. Get it on the books. Get a referral for a derm. Explain to him that the medical system has let me down too many times in the past, and he can either help me or I'll find someone else. I think I've just hit that wall.   It also doesn't help that my mom and I had a heart-to-heart the other day, and she proceeds to tell me: "Oh our family has always had stomach issues. Did I ever tell you I was hospitalized as a baby because I couldn't digest formula? It's true! I was actually one of the infants they developed rice-based formula's for because anything else would leave me screaming and throwing up and failing to thrive!" Me: "Are you kidding me? Isn't that what happened to me too?" Her: "Yep, you too. Once we switched you to rice formula or formula without wheat, you were fine!" Me: "Sooooo did you ever think to get me tested as a child for an allergy, or celiac?" Her: "It crossed my mind a few times as you were growing up, but the doctors told me it was probably just lactose issues" Me: "What about you? Did they ever want you to get tested?" (She's had LIFELONG issues that mirror mine) Her: "I think so... Meh, never got around to it" Uggggghhhhhhh Moommmmmmmm seriously?! I'm 28 and had these issues since I was in kindergarten! Only NOW it comes up that doctors recommended you be tested for Celiac and that I have identical issues to you?!   Just a wee bit frustrated at the moment
  5. Good morning,  You wonderful folks have been so incredibly helpful. I am turning to you once more.  I finally found a doctor in my area that is willing to listen to my concerns. Well, she's a naturopath, but one of the top recommended in the city. I have an appointment with her on Nov 19th.  Since Oct 4th, I've gone back to a gluten diet. Tracking what I eat and any changes I notice. I'm eating a sandwich a day, and eating out with friends again.  At first it was just my gastro and skin symptoms that returned. Not too bad. But now has been the return of my most dreaded lifelong issues; A constant abdominal pain (about 5-6 on the pain level, flaring to an 8-9 at times) and my debilitating migraines. I didn't realize how much my diet had changed how good I felt until I went back. I was crying in the truck the other day because it brought back the realization that I've spent my whole life in pain, and I thought it / this was normal. That a stomach ache at around 5-6 on the pain scale was 'normal' for me growing up.  After going gluten-free for almost a year, I realize how much better I felt. And going back to it feels so incredibly wrong. Like, wrong wrong. I feel like my body is desperately trying to tell me to go back. At Thanksgiving yesterday, I almost cried because I put a huge piece of garlic bread on my plate and all I could think about is: How bad is this going to hurt later...? Would the migraine flare up again until I couldn't walk? Now I'm laying in bed, curtains closed, what feels like a fork lodged in my abdomen, texting my boss to tell her I can't stand up without getting vertigo.  I feel like I cant do this until Nov 19th. It's worse than before. And my lovely Naturopath told me that if it feels this bad to stop, but if it's something I want tested then that's my choice.  Have any of you done the gluten challenge to try and get a positive? Is it worth it?  Cause right now... I feel the worse I've felt in a long time. Even my husband has noticed I'm not my usual self
  6. I have stopped for now, as my wedding is in 2 weeks and I am not getting a biopsy done until after. I don't want the rash to end up on my face, chest and arms if I can help it! Oh that would be brutal! After that point, I'll eat gluten again, once I can confirm there's a dermatologist who can do a biopsy :-)
  7. Thanks Cyclinglady for the welcome! Yes, I've switched 100% back to what I was eating prior and have cancelled (or moved to my house ;-)) any dinner plans with relatives until W-day! I'm so glad you pointed me in that direction. I just cruised around that section of the forum for a bit and found my way to the DH photo documentation thread. The very first image, I honestly burst into tears as I started looking through that thread. The very first image is what my hands have looked like my whole life (little itchy bumps almost all the time). They tested me for herpes because they had no idea what it was, or thought I'd touched poison oak. I'll be doing some research and delving into things after wedding. Luckily, I know quite a few dermatologists I could get in with, haha. Skin rash and conditions all my life, all inconclusive of course. Oh I can only imagine how it must be tricky for your husband! It's so hard for people to believe that we know our bodies enough to know when something is legitimate. Yet if word comes from an MD, it's suddenly that much more 'believable'. I can absolutely relate. We could form a NDGI club with fancy shirts and badges. You know, make it look official. Then maybe it'll be easier for people to accept.   RMJ: Thanks! I'll take a look. By the way it sounds, I may go with DH testing first rather than gluten it up for a few months. It's only been 2-3 weeks and only 2-3 gluten meals a week and my rash is already nuts. I can't imagine doing every day for 2+ months, ugh
  8. Good evening, folks. I came here a little while back and have been lurking around for a while. I am this stage still undiagnosed, but have put myself on a heavily reduced gluten diet over time and have had great success in managing my symptoms for the past year! I have an awesome boss who is a huge support for me, which helped me make a lot of changes. Since coming here my first time, I've moved to a new city. I did travel quite a distance to go back and see my original family doctor, but upon talking about my belief of gluten sensitivity and wanting further testing, he (actually) rolled his eyes and told me that gluten intolerance is an imaginary condition and that I was wasting his time. As you can probably imagine, he is no longer my doctor. I'm not a huge fan of doctors to begin with, so I was not in a hurry to find a new one. Fast forward to now and the past few months, my diet has fallen somewhat to the wayside as we get closer to our wedding. Lots of people wanting to get together, eating at restaurants outside of my chosing, a lot of house parties and get togethers. And I've noticed a huge difference and return of several issues. I feel like I've reached the point where I may want to officially go for testing now (after the wedding, in 2 weeks). However, after my last experience with discussing this with a doctor, I'm wondering how to bring this up with an entirely new doctor? One that doesn't know all of my history, or hasn't seen me through all of the things I've had issues with even since childhood. Are MDs the only ones who can order the tests needed to start the screening process? What about Naturopaths? One of my client's works for an amazing Naturopath in the city, about a 2 hour drive from me. I've been seriously thinking about going that route. The reason I feel I need to officially go for testing is that: a.) My symptoms after going gluten-free for almost a year and then introducing it over the past 2-3 weeks are worse than before, including increased severity of my life-long, come-and-go rash (which normally were just blisters, but tonight I noticed blisters that are bleeding on my hips, abdomen, inner arm and now a new spot, my ankles! ugh! Right before the wedding!)  b.) Several friends have decided to go gluten-free as part of a 'healthier diet', and I feel that people aren't respecting my sensitivity if I ever bring it up now. I very very rarely bring it up. I typically just say "No thanks :)" if someone offers me pizza or something c.) Part of me just feels like I know something isn't right, and hasn't been for most of my life. And combined with people using gluten-free as a diet, and then talking badly about people 'self diagnosing' or telling me 'it's all in my head'.... I just feel like I need some kind of validation that it's not in my head. That it isn't normal to have to psych myself up to go out to a restaurant with friends and put on a smile so they'll think everything is fine, because there's a good chance that later that evening I'll be curled up on my bed or the couch in pain afterwards, or spend the night in the bathroom. But because an MD didn't give me a diagnosis, it's all 'in my head' or 'just heartburn' or I've just 'made it up'. Yet the MD won't even give me his time. Frustration doesn't even begin to touch how I feel anymore. I'm just disheartened, you know? Like, why would I make up having an insane rash that wakes me up in the middle of the night? Or the fact I can't stay over at people's houses after a party because I don't know if I'll be in the bathroom all night. How to you find a doctor that will listen to you? Can a Medi-Center doctor refer to a GI, or is it only family physicians? Like I said, I am willing to pay out of pocket on this one if it will give me some sense of sanity over all this. To be honest, eating gluten-free is totally easy and I'm completely on board with that. It's eating gluten-free in front of everybody else that feels like the hardest thing in the world right now. Like I somehow have to 'prove it'? Like they expect people with Gluten intolerance to have a little club ID card I can pull out at parties that says: "Hi, I'm so-and-so and I'm actually Gluten Intolerant!"
  9. Lets start with the easy stuff...   My name is Danielle and I live in Alberta, Canada. Turning 27 this year (when did that happen?) and I've found this forum recently as I look for both answers and support.   I am not formally diagnosed with celiac disease, however, I am realizing more and more that this may be the answer to the many misdiagnoses I've had over the years. At first there were whispers of symptoms, just barely hinting that something was going on. But it was this past weekend that my body had it's first over-reaction. It was so bad that I can't deny that something is going on. Once I started researching celiac and it's many associated symptoms, it actually made me nod my head almost constantly as I checked off the issues I've been having all my life.   The past 6 years have been the worst, with more obvious issues hitting very recently.   I was diagnosed with Pityriasus Rosea about three years ago due to a repeat rash I kept getting. My doctor did his best to identify it, but in the end told me this condition was subject to many variances and that no prescription could help. I treated it with UV therapy, which helped. But I also 'cleaned up' my diet to see if it was a food allergy. Eventually, the biggest rash went away.   However, after that big reaction, I noticed something that was my first clue. The rash would come back if I went off my more 'clean' diet. Only this time, it was blisters down the insides of my forearms. Sometimes on my ribs under my arms. I'd switch my diet, and they would go away again.   Any type of alcohol makes me instantly sick, except for vodka or some distilled spirits. I get instantly and horrifically sick on wine. Beer is out of the question.   My boss right now is gluten-free, and told me to try it. I did, and my rash went away. My headaches and nausea and stomach pain went away. My skin looked better. I could sleep and my joints stopped aching like I always had the flu.   And remember what I said about this past weekend being my overreaction? I had been gluten-free for a few months now, even through Christmas. But this weekend I had pizza, battered wings and two helpings of glorious cake at my friend's birthday celebration. I just had 1 ounce of vodka with clamato, so I definitely wasn't drunk. But boy oh boy, was I SICK that night. It lasted four days, and I'm still feeling 'unsettled' today. And wouldn't you know it, the rash on my arms flared right up again. Ugh.   Here's my major issue... I have no problem going gluten-free. I love cooking and did just fine even through Christmas this year with just sticking to my protein and fats, and a variety of veggie sides. My family, however?.... They think I'm just being a 'hippie' and some members have actually been offended when I've refused bread at dinner, even when I explain it makes me 'sick'. The whispers came back (quite hurtfully) that I was using it as an excuse to skip carbs so I could 'stay skinny'.   I trust my body telling me that gluten is just not something it wants to deal with anymore. I feel better without it, my body responds better without it. But at this point, I feel as if I need to get a clinical diagnosis in order for my family and my fiances' family to believe me.   But I also know from reading here that blood panels can come back negative. I also hesitate to eat a TON of gluten (even briefly) just to get a 'positive', especially with my new job.   So at this point, I'm wondering: I want to go to my doctor and tell him my concerns. He's an amazing doctor, very open-minded and trusts that people know their bodies. But if I get a negative blood panel, what do I tell people? Is it morally okay to tell people you have gluten intolerance even without a professional diagnosis? Or should I just suck it up, gluten it up and try for that positive professional diagnosis?   I'm so glad I've found this place. The amount of information here is incredible. Thank you