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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. Smylinacha,   I just went through this. Spent the past 4 months having the same symptoms you are experiencing - pressure in chest, burning, waking from sleep, etc...  I had my endoscopy a little over a month ago.  It ended up being Eosinophilic Esophagitis (EE).  Basically, I had an allergy to something (probably gluten, as I've been eating gluten for 10 years now, after a suspected misdiagnosis of Celiac which turns out may have actually been there all along (results come in this Friday)), either in the environment or in food, and it has developed and irritated my esophagus over time to the point where I developed strictures at the bottom of the esophagus, and ridges like a ruffles potato chip on my esophagus from the reaction, which in turn makes my esophagus hard and not flexible.   So when you eat, your esophagus is not bringing the food directly into your stomach as it should. Rather, it irritates your esophagus further and some of the food sits on the ledge of the stricture at the bottom of your throat entry-point into your stomach, waiting to "fall in."  This sensation mimics a heart attack due to the pressure it causes.  The treatment is a steroidal inhaler like people take for asthma, but instead of inhaling, you puff and swallow, to heal the reaction in your throat. It takes about a week, but then you will feel back to 90%. The treatment lasts for 6 weeks, twice daily, four puffs total. If this doesn't help, then the next step is to perform another endoscopy and stretch the stricture, removing the "ledge" that has formed at the bottom of the throat.   Also, H. Pylori is a bacteria that half the population has, but 80% are asymptomatic. However, 20% experience symptoms from the bacteria's cylindrical shape possessing the ability to grind through the stomach lining, causing ulcers, bloody/coffe-ground-like vomit, blood stools, and a myriad of other gastrointestinal issues.  Treatment is a hard course of strong antibiotics for about two weeks.
  2. jhol & Shadowice,   Thanks for your replies guys.  Also, my apologies about my repetitiveness with stressing the textbook symptom. I did not see you guys already addressed that above.  That makes me feel better that it doesn't necessarily have to be like that.  Jhol, very glad to see someone else has the same issue...I mean, I'm NOT glad that you are suffering, but I am glad that I'm not alone, lol.   The good news is that returning to this world after 10 years, it seems infinitely easier to manage having a gluten problem than it was a decade ago. I remember in the past when I wanted to go out to eat, I would have to ask the manager what had gluten, and since he didn't know he would give me the address of corporate, and I will have to write a letter to them to get answers, and etc etc etc.....  It was like having a 2nd full time job, honestly.  Now it seems most places have a gluten free menu, which is great.   Question: Do you feel worse if you have a lot of gluten than you do if you get a little? Or is it pretty much the same regardless of amount?
  3. Wow.....I am stunned. You guys have given me a ton of great info and things to think about. I can't believe I could have had this all this time. I've been going crazy trying to figure out what is making me feel like general crap and I could never find it. I hope I am on the right track.   GFinDC, I actually try very hard to take supplements. I take Green Powder Superfood Drink Mix, Vitamin D, Probiotic Pearls and Digestive Enzymes with my meals...but as you said, they rarely make me feel great. I mean yes, I feel a little better with the initial rush of vitamins being processed, but it is no where near how I would imagine these supplements are supposed to make you feel. Also, it's a bit gross, but often times my stools do look very rich, as if the nutritional content is being expelled with the waste.  My bowel movements also don't usually smell very bad, or smell at all, not sure if that goes along or against with the theory. Perhaps the high nutrient content potentially still in the stool prevents that or lessens it?   I must stress, however, that while I do appear to have just about every symptom of Celiac and/or Gluten sensitivity, I don't have what many call the textbook symptom, or at least what they called in 10 years ago - the crippling, horrifying stomach pains that put you on the ground for hours to days after ingesting gluten.  I have stomach discomfort pretty much daily, but it isn't so crippling that I can't move.
  4. Thanks for your replies guys. Unfortunately I am uncertain what blood tests I was given, but I know I had it done 2-3 times and it always returned positive.  But again, I must stress, I do not get the crippling doubled-over pains that are apparently textbook of Celiac when I eat gluten. I just feel like crap for a while.  He did order three, compared to my two, from a decade ago, however.  I should also mention that I am fructose intolerant.   Wow, I can't believe my last doctor. Perhaps I could chalk that mistake up to people not fully understanding Celiac over a decade ago? Or maybe since I was a kid, he didn't want me to go through a procedure like that and figured he's spare me the discomfort and try the non-gluten for a year first?  So it is wholly possible that my villi could have been damaged ever since....but because I had the sigmoidoscopy years after restricting gluten, it turned up healthy.  I am completely stunned. Thank you guys for bringing this up.  He really never was a great doctor, to be honest. I mean, when I was a kid, I didn't know any better, but looking back now, he always gave off the vibe that this was his job and it funds his personal life. The doctor I am seeing now was 2012's best gastro in the county.   Question: What if I just have gluten sensitivity and not full celiac? Would the villi still show damage?   Question: How long does it take for villi health to return to the point that you wouldn't be able to confirm celiac? I assume it is less than 2 years? I just can't for the life of me fathom a screw up that big, so I am going to retrace my records and see if he was really that oblivious.  Let's say for the sake of argument, I am not remembering correctly, and I was gluten free for 6 months? Half a year.  Would it be fully healed by then, or untraceable?
  5. Hi All and Nice to Meet Everyone   First, let me say that I haven't been around these parts for a good 10 years now. I was diagnosed in 2001 at age 16 with Celiac disease (back when it was virtually unheard of) and Acid Reflux/Heartburn.  I had multiple blood tests done and they always came back positive. I followed the gluten free diet for 2 years, and it didn't really improve my physical symptoms, which were just about 100% bowel related; Mostly high frequency, urgent and loose, but not pains and diarrhea.  Anyway, back then, the defining test to see if you had celiac was to do a sigmoidoscopy and check for villi damage.  I had that done in 2003 and there was no damage found, so I went off the gluten free diet. My bowel symptoms steadily improved over the years, but in late 2004, I did develop an overall feeling of malaise and just generally feeling like heck all the time which seems to get worse every year. Even on my good days, I still always feel like something is missing and life should feel happier.  I have consistently had severe heartburn ever since the Celiac diagnosis, however, and it is medicated with a PPI, though flare ups do happen despite.   Anyway, fast forward... I have been eating gluten since 2003, and up until a year ago, my stomach, while never really "normal," was stable enough that I could live my life. The malaise pretty much always hung around, and so did the bad heartburn, though. I started developing the urgency feeling again, and my BM frequency went up to 3 times per day on average.  Not as bad as 10 years ago, but that's not all.  Towards late 2012, I was developing unexplained aches and pains, social phobias of being out in public, and heart-attack mimicing symptoms 4 times a week, often which would wake me from a sound sleep and not subside for an hour. These symptoms would be chest tightness, horrible trapped wind feelings, and bad abdominal pain. On top of that, and again, these never really went away but seem to continue to get worse, I have these feelings like everything is way too much effort, dizziness, foggyness, trouble concentrating, anxiety and total disinterest in doing anything other than sitting on the couch and watching TV after work and on weekends.  I've tried tons of different hollistic things to cure my acid reflux and malaise naturally but nothing has been effective.  I've never thought of harming myself and am still very interested in living, I just feel like life should "feel" better than it does to me. I'm 28 years old. I should "feel" better.  I should WANT to go hit a bucket of balls, not force myself to go do it. I find that when I do force myself to do things, I feel like complete and total crap, until I've been doing it and my body has been working for a while....then I start to feel better, but it is so tough to get myself to that point because I feel so terrible during.   Anyway, earlier this year, I was unable to eat anything for a month.   I woke up with one of those heart attack mimicing bouts, and decided enough was enough and went to the ER.  I got the full GI workup and pretty much a full body check up - everything came back fine.  So I went to a new and well respected Gastro for the first time in 10 years, and he performed an endoscopy and found that I had Esophinagus Esophagitis, which is basically a narrowing of the bottom of the esophagus and a loss of esophageal flexibility, due to allergy....which the reaction is being treat with steroids at this time. Basically, an allergen in my body that has likely be present for a long time has built up over the years and caused my esophagus to react in this way, and since the throat becomes hardened and not flexible and narrow at the bottom, everything you eat makes you feel like you are having a heart attack, which explains that.   Anyway, as I am being treated for that, I of course told my new Gastro that I was "misdiagnosed" with Celiac Disease 10 years ago.  He said, "Why do you think you were misdiagnosed? Your blood tests were all positive, multiple times."  I said, "Well because I never really had the instant doubled-over pain that lasts for hours or days when I eat gluten and the sigmoidoscopy showed that I had healthy villi.  He said, "Celiac has changed a lot in 10 years. Just because your villi are healthy and gluten doesn't completly double you over doesn't mean you don't have Celiac or at the least, a gluten allergy."  He said gluten intolerance can manifest itself in a huge spectrum of symptoms, and not everyone has the same, or one universal shared symptom.  Due to this, my gastro has ordered a fresh set of celiac blood tests.   So the other day I had a revelation.  What are the chances that I had been feeling just overall generally off and like there should be more to life and I should have an interest in doing more things and not always feel like complete crap all the time (dizzy, spacey, queasy, unfocused, cloudly, phobic, depressed, anxious, etc....) for the past 9 years because I started eating gluten again in 2003, thinking I didn't have Celiac, and nothing I do really fully takes those feelings away.   I don't have diabetes, but for anyone who does, and judging by how my uncle says he feels when he gets too much sugar...that feeling of just "blah, ugh, spaciness, disinterest, zoned out, don't want to do anything, "everything is too much effort" is how I feel.   I guess I am just wondering what the chances are that 1. This sounds like Celiac or gluten intolerance to you guys? or 2. If anyone has/had similar feelings while on gluten or when they consume gluten? I can say I've been more conscious of my gluten intake during the past week, and it may be placebo effect or coincidence...but I had beef, potatos, carrots and a non-alcoholic beer for dinner last night and felt decent enough vs. 3 slizes of palor pizza today and I feel like crap.  Not in pain, per say, mind you.  Just feel like total spacy disconnected queasy crap.