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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com 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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes


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About merpaul

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  1. GEMINI! You are the most amazing human being to ever walk this earth. You cannot believe the amount of happiness (because of you) and anger (because of these STUPID doctors) that is coursing through my veins at the moment. IT IS THRUSH!!!!!!!!! Thank you. Thank you. Thank you. Thank you. Thank you. You have just saved me from 3.5 YEARS OF MISERY with seemingly no end in sight. Well, thanks to you I can finally see the light at the end of the tunnel. After reading your post here and doing a little more research, I finally confirmed it this morning. I've been vigorously brushing all that yelllow/white yeast off my tongue for the past few years thinking it was nasty food buildup. That's why you couldn't see it in the first picture I posted. Welp, here's a new one of my tongue, my little brother's, and the one I found on google a few minutes ago that matches both of ours exactly! Mine: My brother's: Google: I seriously cannot put into words what you have done for me. The words literally don't exist in the English language. Please accept my sincerest gratitude, and please please have yourself an amazing day. Let it marinate for the rest of your life. You have made an incomprehensibly large contribution to my life. I saw your response to my other post, so I know you've read what I've been dealing with, and I know a lot of people on this forum are suffering and looking for answers. I never dreamed of actually solving this by posting on this forum. I figured, "What the heck, I've got nothing to lose, and nothing but pain and exhaustion to look forward to if I continue to rely on idiotic, narrow-minded doctors." I've seen 4 different ENTs – who were allegedly very good. I have good insurance and was able to get appointments with people educated at Harvard, the University of Michigan, and Wayne State. That apparently means zip though, as does their specialty. And that's not even counting the other myriad of doctors I've run off to for every single other condition, many more complicated involving countless time consuming, expensive test. But those ENTs should have this down pat! I'm ready to throttle some people right now. Anyways, I have to go now. I'm going to the doctor's this afternoon to get some antifugals! Much love, Merp
  2. Hi Gemini, I know this is an old post, but I am hoping you will still respond! I am wondering if what I have could be a form of esophageal thrush. I've had a sore throat for 3.5 years now, it's incredibly painful and keeps me from talking most of the day. My throat and vocal chords are red and inflamed, and I've seen three ENTs who have all just said it's acid reflux. I've tried the meds, changed my diet, and raised my bed to no avail. I don't think I have the white tongue coating, but I do have a decent sized white spot on the roof of my mouth, near the back, on my left side that you can see in this picture: You seem to have some good experience with this so I'm wondering if you think this sounds like thrush?? Btw, I've been on a lot of antibiotics throughout my life. My parents have told me recently that they took me to the doctor for a good ol' course of antibiotics all the time. I was their firstborn and they didn't know what else to do when I got a fever. Well, I'm 22 now, and I've had my fair share of antibiotics throughout the years that I can remember as well. What do you think? Thank you! Merp
  3. Hey LC, I have the same problem with coffee! It's brutal. I'm not technically celiac though, but I've been on a (mostly) gluten-free diet for 2 months now (lactose free for 2 years). This website says, "10% of coffee is a protein that cross reacts with gluten antibodies." (http://www.thehealthyhomeeconomist.com/gluten-issues-or-celiac-dont-drink-coffee/) I'm not sure if that's our issue or not. I'm with you on the tight muscles. My back feels like it's constantly extremely tight, and when I drink coffee, it feels like my muscles contract within minutes/seconds and sometimes it's unbearable. I'm on 200 mg of Tramadol a day for my back pain and throat pain, and if I have coffee my back will start screaming right through the tramadol and I'll usually rub some icy-hot on it. That helps a lot, but it's no solution clearly and only last a couple hours. Today I didn't even have coffee and my back is driving me up a wall. I'm about to go to bed so I can forget about it. Now that I'm thinking your post over, I also started working out regularly a while ago. I went hard for a solid year, but I've been mostly stopped for the past year because of my insane fatigue that I can't seem to figure out. I'm also on 30 mg of adderall/day just so I can stay awake. Before I was taking this I would literally sleep 12 hours before work, get ready for an hour, drive another hour to work, and be ready to nap. I would then chug 2 cups of coffee & down 2 aleve, my back would start screaming, so I'd use some bengay on my WHOLE back, then I'd nap my whole 1 hour lunch break. Wake up, chug more coffee, more bengay, more aleve, go home, eat dinner, then go to bed immediately to escape the pain and because of the fatigue. Sorry this is out of order, but I have had to keep re-reading your post. I also have had a fair amount of heartburn and have since changed my diet a lot (no orange juice, tomatoes, energy drinks, tea, coffee, etc.), which has helped a lot, but I still get it more than I'd like to. I also seem to have chronically cold feet. I'm currently wearing 3 pairs of socks (one regular and 2 pairs of wool socks) and they're still freezing. Never thought of that as much of a symptom though, but now that you mention it maybe it is. Wish I could offer you more advice, but I'm in the same position you're in. I've been dealing with this for 3.5 years (I've also had a chronic sore throat, that's my #1 symptom), and I'm losing my mind. This is the most exhausting, frustrating, painful thing ever. Have you ever had a sore throat from this? Sorry if this was a horribly unordered ramble, it's been a long day and I don't want to re-read/edit it.
  4. Hi Everyone, First off, this is my first post on this site. I apologize that this may get a bit long, but I'm really hoping someone on here can help me and if you make the committment to read all of this I thank you dearly and appreciate it more than you know! I also apologize if I'm rehashing something I should be able to find somewhere else on the forum, but I'm really at a loss right now. A little about my current situation: I'm a 22 year old guy, 160 pounds, in pretty good shape, and have played sports/eaten fairly healthy my whole life. I've been fighting this for over 3.5 years and am simply out of ideas. I've seen every doctor I can think of, and no one seems to be able to find anything wrong with me. However, my symptoms are so severe I can barely make it through the day anymore. I'm worn out, exhausted, and ready to give up. I've been prescribed 30 mg Adderall and 200 mg Tramadol per day (for 3 months now), and I still feel like I'm just making it through. I'm sick of drugging myself up every day just to get by, but I don't have a choice at the moment. I'd like to list my symptoms and see if anyone else has had the same experience. I'm wondering if this is some sort of gluten intolerance/food allergy. Or, if anyone has any other ideas I am more than willing to listen! Here we go... 1. Sore throat – This is the main one. I've had it since August 2009. I've always gotten sore throats since 6th grade, usually for a month at a time, once or twice a year. I got this one in August '09, and it just has never gone away. It's a constant pain, every day. I feel it when I'm not talking, but mostly it makes me want to not speak. Every syllable hurts. Which is really annoying since I used to be super outgoing and make friends with complete strangers all the time. 2. Fatigue – This has gotten bad the last year. If I don't take the Adderall, I lay in bed all day. I usually try to take the weekends off my meds, and I hardly leave my bed. I have no motivation to do anything. It doesn't matter if I sleep 4 hours or 12, I'm exhausted. I'll sleep 12 hours, wake up for 2, then go back to bed for a 2 hour nap. It's insanity! 3. Running out of breath easily – I'm not sure if this ties into the fatigue, but it has started the past year. It's strange because I'm in fairly good shape (I was doing triathlons a little over a year ago), and now I start breathing heavily from going up one flight of stairs. (I did have a procedure done 2 weeks ago where they cleaned out phlegm from the tube that runs into my right lung, this has helped greatly, but I still have some trouble) 4. Lactose Intolerance – This is the one that cued me in to the idea of gluten sensitivity. At one point in high school I used to drink 1/2 gallon of milk/day, and then probably about 2 years ago I developed an intolerance and have been avoiding dairy ever since. 5. Excessive Appetite – I've always had a fast metabolism, but lately it has gotten insane. I eat literally every 2 hours. If I don't eat in 3, I start feeling exhausted and painfully hungry...If I wait 4, I will fall asleep. I recently had a glucose tolerance test (to test for diabetes) and I wasn't able to eat for about 5 hours, and I almost passed out driving back to work afterwords. My blood sugar was extremely low, which I found out later, 54 mg/dL, when I left the hospital. Anyways, it's gotten to the point where I don't enjoy food most of the time. It's a burden. I feel like I have to eat...it's become work. 6. Back Pain – I've had this for a while, but it has gotten really bad the last year. Somedays my throat pain dominates my mental state, some days my back pain does. 7. Acid Reflux – I've had to drastically change my diet to avoid some of my favorite things (orange juice, etc.). I tried omeprazole (prilosec) for a while, but it didn't seem to help. I've also tried holistic ways of dealing with it (aloe vera juice, probiotics), but to no avail. If I stick to a good diet though this doesn't bother me that much anymore. I avoid coffee, tea, and energy drinks. 8. Difficulty Swallowing – This started about 4 months ago, and is part of what has prompted me to really try to tackle this stuff. It feels like my throat is closing up on me and as if I'm forcing food down a narrow hole as I swallow, even though the doc says my throat is plenty open. It doesn't feel like it. Sometimes I'll choke on my multivitamin in the morning. I also choked on shredded chicken in my chicken noodle soup (gluten free) the other day. I appreciate anyone who has read this far! Just a little more I want to share on the testing I have had done. My glucose tolerance test was negative for diabetes. I had a celiac blood panel done, and I don't have the exact numbers in front of me but it was negative. I've been on a gluten free diet for the last 2 months and haven't seen any improvement, although I have noticed I was glutened 3 times after rechecking labels later. I'm trying my best, but I'm still learning. My younger sister (21) and brother (18) have both been DNA test for celiac and were found to have DQ2.5/DQ8 and DQ2.2/DQ8 genes. I had an upper GI endoscopy recently and the doc stretched open my throat and also ruled out eosinophilic esophagitis. He didn't check for celiac though, and I hadn't considered/thought of it until literally the next day! I had a sleep study 3 weeks ago and ruled out sleep apnea/other sleep disorders. I've been to 3 different ENTs and had multiple scopes, but all they've been able to give me has been omeprazole and blank stares. I've been tested twice for mono and had a CT scan of my neck that found nothing. I had an allergy test 3 years ago when this first started, which found I was mildly allergic to milk and beef, but the doc said it wasn't really significant (can food allergies change drastically over time? maybe something would be more apparent now that this is more progressed?). Could it be a mineral/vitamin deficiency? I also tried a course of prednisone 3 weeks ago, but I developed a rash on the second day and stopped taking them. I might retry that though when I see my doc next week. I also want to try a 24 hour PH monitor. I've also elevated the upper end of my bed for the past year or so, to no avail. Sorry this is so long, and also sorry if it's a bit jumbled. But, anyone have any thoughts? Thank you for listening. Much love. Merpaul