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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. I never really had much heartburn before my diagnosis of Celiac and consequent dietary changes. But since then, I have discovered Udis, Van's, Canyon Bakehouse, and many other gluten-free brands. About a year ago I began eating 2 waffles every day, 7 days a week with my breakfast. The waffles I was eating were Nature's Path and Van's, both which use very high amounts of sodium acid pyrophosphate. The waffles are mostly air and carbs. Within a few weeks I began to develop recurrent, very painful heartburn that would popup constantly. My tolerance for acidic foods declined--whereas previously it would take much more acidic foods to cause heartburn, now any amount, no matter how small, would cause heartburn. And it kept getting worse with each month to the point that I began to worry about my health. I developed GERD that wouldn't go away for 24 hours after eating an offending food. The offending foods list kept growing bigger and bigger to the point that almost anything would cause heartburn and some degree of GERD. So I eliminated almost all foods containing sodium acid pyrophosphate and the heartburn and GERD stopped. I can eat tomato-based foods again with either no discomfort or 5% of the discomfort I used to experience, and I can eat foods on the offending food list again with no heartburn at all. Despite searching the internet for hours for an answer to what was causing my heartburn and GERD, I found nothing definitive and had to figure it out on my own. Did you know there is absolutely nothing at all anywhere on the internet connecting sodium acid pyrophosphate with hearburn? To my knowledge this will be the first ever post on the topic on the entire internet. Either that, or both Google and DuckDuckGo are suppressing the information. Also, did you know that sodium acid pyrophosphate is an ingredient found in almost all aluminum-free baking powder? That's what I get for trying to eliminate aluminum! I am making the switch to single-action aluminum-free baking powder soon--single-action doesn't have this ingredient, but it's less convenient to use unfortunately. I'm interested to hear if it causes anyone else heartburn as well. I'm glad to be heartburn-free and comfortable for the first time in a year.
  2. Hello folks,  I'm looking for some advice on whether or not people have had similar symptoms/on-set that eventually led them to the Celiac diagnosis. So 8 weeks ago I started feeling lethargic, short of breath and I was having heartburn (but I'd never had it before, to my knowledge, so I didn't know what it was). Prior to this, I was also transitioning out of a phase of high fat, low carbohydrate diet  (ketogenic) which I did to lose weight. I've done this type of diet for months at a time, several times, and I've always had more energy, felt great, and lost weight, I always felt worst when I would go back on carbs. So the warning sign of not tolerating carbs was there I guess, and to be honest it was carbs - pizza, pasta, rice, chips; I rarely ate sugar in terms of sweet things or fruit in general in life, not even soda. 3 weeks later, after a few beers, I threw up violently and had massive acid reflux symptoms which affected my throat, breathing, everything; I was diagnosed with mild antral gastritis and grade B GERD, as confirmed by a GI scope procedure. I responded really well to PPI/antacid treatments, which I still use. I changed my diet completely: removing alcohol, coffee, spicy food, etc... I've had little or no acid symptoms since treatment started. During this whole period I was having constipation problems -- and then water stools -- then back to C, and I also lost 2 stone in weight: or 28 pounds, mostly in a 5 week period. Now, week 8, I have gained back my appetite and 12 pounds of the 24 lost and my bowel movements have become stable (but not normal, for me).  However, some things have persisted or have been left unexplained: I had pain in my pelvis, lymph node swelling in my groin and lymph node swelling in my left armpit which was painful. They come and go, but the armpit sometimes flares up 20-30 minutes after eating. I also have discomfort in my bowel region, but it's not like spasms with D. It comes and goes with bowel movements.  I now go to the toilet much more regularly; it used to be usually every second day, now it's 2-3 times per day and it's a lot more than it used to be. mostly normal looking stools but sometimes hard little rocks.  I get a small painless flat rash of red dots on my hands, upper side, near the thumbs usually; sometimes 20-30 minutes after eating (once co-incidentally with armpit swelling). Also it happens sometimes when I'm passing stools. I've noticed this rash appear with: eating a lot of whole wheat bread; eating chocolate chip cookies, eating french fries. The rash disappears usually after 30-40 minutes; it doesn't happen every day but at least every second day.  I've checked for other rashes but haven't found any.  I have constant mouth ulcers and my gums are inflamed often.  My pee has not been the same. It's darker but not outside of normal yellow ranges. But, I used to mostly pee clear completely, as it were water, for my whole life in living memory. Now, I pee and it's always yellow, usually very pale yellow inside normal ranges. But, it's different for me.  My blood test from when this started has shown slightly elevated bilirubin level (by only 1 point, so the doctor effectively discounted it as being significant); My blood tests have also shown very slightly high neutrophil levels, which I think have gone down since GERD treatment. All other tests are normal. I have a dry mouth often, I drink a ton of water. Since this all happened, I have dry eyes and got prescribed eye drops. I've always had perfect vision before now and don't wear glasses or anything. Also, my skin on my face is very dry.  I still suffer from fatigue and shortness of breath. I did have a lot of burping and passing gas at the height of the gastritis; now, however, that has gone away and things are normal. I also don't have stomach pains often or D, or even C now.  I asked the GP in my most recent visit, if they thought I could have a food intolerance: they said that I'd likely have a rash everywhere and it would itch. Plus, I've never had a food intolerance to anything or allergy in my life until now... I'm 24, 5'8, 10 stone 6 pounds, M. No underlying health issues. I was in decent physical shape before all of this.  So my questions are: 1) could this be celiac: did you guys have any of these weirder symptoms like lymph node, dry eyes, higher bilirubin, shortness of breath? 2) I don't have D and C often anymore in spite of going to the toilet more often, does this rule out Celiac?  3) My plan was to eliminate gluten for a week or two, and see if my fatigue, libido, urine colour and other symptoms go back to normal. If that happens, I plan to re-introduce gluten and insist on testing. Would you recommend this? I don't believe my GP is convinced of testing now.    I am continuing to see doctors to rule out other causes, but this is one that I feel may be secretly behind some of my symptoms.  Thanks in advance!      
  3. Hi to all. I'm new on this, and i want to share something: Male, 29 years. Right now i'm on a non-gluten diet. Feeling relatively well. Healthy. Lots of tests, all of them went normal. Before this, i was living for some time with an array of 'strange' and 'unrelated' symptoms. Strange and unrelated, because at that moment i didn't have information about the celiac thing.   So: 1) Acutte anxiety, some kind of generalized-anxiety-disorder. Panic attacks, from time to time. 2) Abdominal distension, with strange noises. Diarrhea, with mucus, 2-3 times per day, alternated with constipation, every few weeks. Lots of belching (a lot) 3) Uncomfortable and disgusting palpitations after dinner, on a daily basis. Specially after large meals with carbs. With no pain, thankfully. Just the akward sensation. 4) A little overweight. Around 11 KG. 5) Mild insomnia. 6) The most notorius: Acid reflux, pyrosis, after every meal.   All of this disappeared very quickly, after the first 10 days on the diet. The mild overweight also, after a few weeks. Thoughts on this? Anyone going trough something like this? It feels strange.  
  4. HI all!   Does anyone take Zantac 150 (over the counter) without any problems? I just called the company and they told me they don't put gluten in the product, but can't guarantee cross contamination. And they don't test for gluten.  I hate when companies say that... ugh..   Or is anyone taking a different acid reflux medicine that they could recommend?   Thanks everyone!
  5. Hello! I want to start by saying that this is a great group of people (based on posts i read) and I am very grateful for any help and insight from you all.    I am a mother of a 1.5 year old girl. I myself am a Type 1 diabetic and I have brother who is Type 1. Type 1 and Celiac are known to coincide so I have been tested before but was negative.    My daughter has had tummy problems from nearly the start and I am wondering if she could also have an autoimmune disease--Celiac.... She was diagnosed with reflux at 3 months old (screaming, spitting up, arching her back). She was put on 2 reflux meds which did not help much. She went from breastfed, to formula (screaming got worse) and finally we put her on Soy Formula and that seemed to help at first.    She was still having terrible bouts of gas and constipation. After she turned 1, we tried milk again-as the doctor suggested- and after a month she began to vomit every day and have painful gas. We took away all milk products and she is not throwing up, but she has 1-2 diarrhea stools EVERY day. It smells HORRIBLE!! And she has painful gas a few times a week. She tends to run a low grade fever and will have unexplained high fevers a couple times a month (102-104 degrees) with no symptoms. Her CBC is perfect, she is still chubby, and her stool tested negative for bacteria (although blood was present in the stool).    I feel like her pediatrician thinks I'm just a little dramatic at this point but I feel like i should have her tested for Celiac. I have no known family history--just the Type 1 diabetes (and I don't know if that puts my child more at risk). Any advice? Does this sound similar to any one else's experience? 
  6. Hello! To recap: I was gluten-free at the suggestion of my then-doctor, but was not careful and not avoiding CC. I did this for about one to two years. I did a gluten trial from mid-October to early December in 2012. Biopsies all came back normal but the trial made me very very sick, triggering gastritis, fibromyalgia, a spike in my thyroid levels, and about a dozen new food intolerances (among other things) for months afterwards. I am about 8 months gluten free now and the fibro FINALLY went away and I don't curl in the fetal position for hours after I eat anymore, so progress! Unfortunately I've been stalled at this point for months now and I'm drastically undereating, which is no good, especially now that I've taken up jogging.   I am still unable to eat any kind of grains whatsoever without triggering stomach cramps, diarrhea or really bad gas. Basically every time I eat my stomach bloats and feels uncomfortable, no matter what kind of food it is. I have to eat small amounts of food at a time because my stomach revolts if I eat what would have been a normal sized meal for me before. I'm getting really angry, these were not problems I had before the gluten trial and they are taking over my life now!   I went to see gastro number 3 today and when I asked her why all of this was still happening so long after the trial she said, "Your symptoms could only be from celiac, but you can't have celiac because with your symptoms your entire intestine would have had to have been very damaged and smooth like a pipe. If you have gluten intolerance, you shouldn't be having symptoms from the trial at all anymore so it has to be unrelated." I don't know why my intestines would have to be "smooth like a pipe", my symptoms are pretty average or even below average in terms of severity- they're just extensive.  I brought up spotty damage and she again said that with my symptoms it would HAVE to be really obvious, and that NCGI just can't cause problems once you stop eating gluten. She also didn't care to hear me try to explain how sick I was during and after the trial. Anyway, I am now 0 for 3 in the category of 'gastros who listened when I told them the gluten trial triggered long-lasting issues'. At least this one didn't tell me it was IBS or depression.   I asked for gallbladder testing, which she granted in the form of an ultrasound later this month. She also prescribed me carafate because she suspects bile reflux (but WITH ABSOLUTELY NO RELATION to the gluten trial). Does anyone have experience with carafate? Is it any good? Has it affected your thyroid medication at all? There was a warning in the pamphlet about decreased effectiveness of thyroid medication. I'm on Armour.   I mean, I'm glad to be getting my gallbladder checked out anyway, but I left feeling very disappointed. I had too much riding on this one appointment, I guess. I didn't even get through my whole list of symptoms! I had so many unanswered questions when I left, it was really infuriating. I'm thinking three strikes is enough for gastros. Any recommendations for other types of doctors who help with weird stomach etc. issues? Also, can anyone recommend a good probiotic? I was going to ask at my appointment but it completely slipped my mind.   Wow, this got long and ranty and little disjointed. Thanks in advance!    
  7. Saw my GI doc yesterday, and he wants me to see a surgeon for fundoplication. I am doing very well with my diet. Scope was good. Markers down, but I still have horrible reflux! I sleep almost straight up, take 60 mg of prilosec and many tums throughout the day. I've tried prevacid, nexium, and carafate. They either did nothing or had really bad side effects. At first I was excited at the prospect. Until I read the statistics, risks, etc. Inability to burp or vomit? That is really scary to me. Difficulty swallowing, paralytic pileus? 6 wk recovery? 10-20 lb weight loss (okay, that part I can deal with). Irreversible. May not work. Anyone have this done? Advice, please.
  8. I had GERD symptoms (heart burn, sore throat) everyday before being diagnosed with Celiac's disease. I have been gluten-free for just over a month and now only get it after sports. For example, if I play basketball I have Heart burn and a sore throat for 1-2 days after. Is this common and If so, did your GERD get better with time?
  9. Hi everyone,   I have heard before that Celiac disease can make one lactose intolerant over time due to intestinal damage.    I have never been lactose intolerant, at least with symptoms, when I was younger (I am now 20) but now I can't eat even a single slice of cheese without getting either lots of gas, acid reflux or even cramping and diarrhea.   I feel the effects of eating dairy instantaneously. Yet if I were to just eat a product containing gluten, such as a slice of bread, I get no symptoms at all. If my lactose intolerance is caused by damage from Celiac's, shouldn't I also feel symptoms from the gluten as well? How can I feel just the lactose intolerance but nothing from the gluten?   Thanks!
  10. When I was in high school, I was overweight and eating a lot of junk food. I also drank a lot of soda. I always figured this could have been why I had embarrassing loud gas noises that would come up into my chest during classes after eating. During periods of Silent reading, I worried that the whole class could hear my strange noises.    As an adult, I have suffered from constipation and trapped gas frequently. I have never known how to burp. so the trapped gas "yo-yos" up and down my system making noises like burps from the inside. It causes major discomfort until I can let the gas out (usually by farting loud smelly farts).    When the trapped gas is at its worst, I get a burning sensation in the middle of my chest and throat in addition to the loud noises. Last night, my husband and I had tacos for dinner and I told him he had made the meat too spicy. He had mixed the ground beef with taco sauce and basil pasta sauce. At the time, my mouth had been on fire and I surrounded the meat with lettuce, lactose free cheese, tomatoes, olives and a Gluten free tortilla. At around 1am, I woke up with the worst burning sensation in my chest and the loud gas noises. It was uncomfortable to lie down or sit. I tried taking Gas-X and later on a couple sips of sparkling mineral water, but nothing worked. I ended up staying up all night until 6am! When I woke up at 10am, I still had the burning. I ate a little piece of Gluten free raisin bread and had a cup of peppermint tea. My husband suggested drinking almond milk, so I had a little. He went to the store and bought me antacids (the gluten free generic version of Zantac) and I took one, still nothing! I had the symptoms most of the day. Around the afternoon, things had finally subsided a bit. For lunch I had scrambled eggs with turkey and lactose free cheese. Then for dinner, I had about half of a baked sweet potato with a little butter. Now it is bedtime and I am having the burning and noises again! The antacids don't seem to be working and I am so tired from not getting any sleep.   My doctor had recommended seeing a GI specialist, but I don't have the money to see one.  Any help would be appreciated as I am having a really hard time figuring out what is ok to eat and what is going to set my body off! I am figuring the taco combo had been too acidic, but is a potato a problem too or is my system still upset from the night before? Is this normal when you first go Gluten free? 
  11. I had my large intestine removed in 2004. Have had 3 blockages since then. In Oct 11 I had over 2/3 of my small intestine removed. As a result I know have what is known as "short bowel syndrome". Since 2007 I have intermittently followed a gluten reduced diet. When I really stick to my plan I do feel much better. However, I believe I have been experiencing many related issues. I am wondering if any one else has experienced Raynaud's, acid reflux, refined sugar sensitivity, joint/bone pain, anxiety and/or cold sores before going entirely gluten free. Beginning tomorrow I am going to go gluten and refined sugar free. Given the short bowel I will have difficulty with too much roughage from fruits and vegetables. Has any one else dealt with this. Thank you.