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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 rcheltrvel

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  1. I have 20 years of gluten symptoms, have a history of Fibromylagia and CFS. I went to a new doctor, a nurse practitioner actually. She wasn't satisfied with just a Fibro/CFS diagnosis and decided to test me for Celiac and I tested positive on a TTG-IGA antibody test. My NP diagnosed me with Celiacs without any further testing and told me if I want to live, stop eating gluten. I decided to go for another opinion and went to see a GI. I had a negative upper endoscopy and set of negative genetic blood tests. Celiac was ruled out and non-celiac gluten sensitivity was given as my new diagnosis plus Fibromylagia. I am not 100% convinced gluten is my issue... During all this testing, the GI found I had Gastritis, inflammation in my stomach and bleeding. I was put on prescription Prilosac. This was found to be caused by years of use of non-steroid anti-inflamitories. I stoped the anti-inflams and started taking the Prilosac. My stomach felt better at first, I am also 100% gluten free now. It's been about 4 weeks and I'm not better. All of the sudden, after eating certain meals, I started having symptoms again. First it's massive upper stomach pain, like a knawing pain, like someone is stabbing my upper stomach with knives. Then I get gas, burping, then a little while later it almost stimulates my constipation and I go to the bathroom. Not diareah but I go and it's loose, normally I never go. I also get a sour taste in my mouth almost every time I eat. My struggle now is trying to figure out if this stomach pain is from me being so super sensitive to gluten cross contamination (the stomach issues seem to happen every time I eat out or get takeout) or if it's from the gastritis not yet healing. The stomach pains seem to only happen at a later in the day meal like lunch or dinner, possibly the Prilosac is wearing off by the afternoon? So confused and just want to figure this out. I called my GI and he added a second dose of the Prilosac to my daily regimen. I have taken it the last three days. The first day I took the second dose, I still had the stomach issues. Yesterday and today, I had no reaction. Yesterday I ate out at a restaurant and today I got gluten free pizza take out. I was fine. I guess if I can have a week of consecutive non-reactions, I can test my stomach with gluten and then I would know. I am looking for any opinions about this and also, if you have Celiac or non-Celiac GS, when you get stomach pain, is it in your lower stomach or is it in your upper stomach? Thanks!
  2. No way, stay on my thread, I love a good argument! I don't have to think about me and my problems for a minute!!!
  3. gene test and biopsy both negative and my uncle is a good pathologist in new york city and I had my slides sent to him for a second opinion, he said the GI took enough samples and everything looked fine.
  4. So far I have elevated TtG antibodies and nothing else wrong. What happens then? What if every test under the sun comes back negative besides TTG-IGA?
  5. Who knows, it could be the sulfides effecting me but then why would vodka bother me?
  6. I have read that article and many others. Some people react to stuff that is below the lower limit of gluten, right? I seem to be that one that has reactions to things with gluten in it under 20 parts per million.
  7. And no to the cracker thing. I brought all my own gluten free crackers and never touched anything else with wheat.
  8. I happen to live on the eastern end of Long Island, NY, gateway to the Long Island wineries (we have over 70). It's a big thing here and my husband and I go all the time, especially when visitors from out of town come to visit. This past weekend we went and at every winery, I asked about the glue/wheat thing. Most people said they didn't know but a few knowledgable people working there were able to confirm that they do use wheat in the paste or glue to seal some of the barrels. They have to use something that is edible to seal the barrels I was told, so they use a wheat paste sometimes or a glue that is all edible which includes wheat. It would make sense as to why I react to some wines and not others. I had wine from a steel barrel and nothing happened to me. I had one from oak where they used the paste and I did react. I am just going by what I was told and my symptoms. When you are finally gluten free, you can really see what gives you a reaction. I will keep testing alcohol and post my findings here
  9. Well, all my tests are in. Positive TTg-IGA, negative biopsy, negative genetic markers. After being gluten free for over 3 weeks now, some of my neck inflammation and pain has subsided, although pain still there, migraines are under control, a little less tire (only a little), a little more energy (not that much) and can think a little clearer (but not that much). So far I have been glutened two times. Once from an accidental bite of a rice cake with wheat, and once from wine tasting at a few different vineyards. Turns out I'm super sensitive to even one bite and even alcohol. I can't drink Vodka anymore and many wines bother me but not all. I believe the reaction from the wine is dependent on if they use wheat in the glue to seal the barrel. I keep trying different wines and one night I had three glasses of one white wine and was fine. I am keeping a symptom journal and there does seem to be a pattern. 30 mins after ingestion of the gluten, atomic gas, I can clear a room. And I rarely have noticeable gas. Then extreme fatigue followed by serious rage, neck pain (once a mirgaine started after the wineries but I took mirgaine med and was OK). The next day and that night, I go to the bathroom (normally I'm constipated but one bite of gluten seems to get my system going I guess). Day one the bathroom stuff is normal. Day two it's soft and then finally diareah. When I wake in the morning my eyes circles are blacker then ever and I get a lovely hire under my right eye. I was truly shocked that I didn't have Celiacs and still have no answers as to why my antibodies were raised, cholesterol raised, low vitamin D, liver enzymes raised, iron ttcb raised, etc.... Obviously I have NCGS and I also have Fibromyalgia but can all of these issues really be from NSGS only? And what about my chronic chills, exercise intolerance and raised antibodies?
  10. Hi Lisa, How do you know from what I wrote that there were only two samples taken from my small intestines? When I was going in for the procedure, right before I went under, I asked the GI if he could please make sure he takes 6-8 samples. He says, don't worry, I take plenty. When I first read the report today, I also thought he only took 2. But then my mom (who also read the report) pointed out that under each of the 2 containers, it says "multiple". So could that mean he took more then 2 samples? My uncle is a big pathologist in NYC, I have a call into him to help me understand what he actually took, not sure if it will help. So if I stay gluten free for 6 months and my level comes down, that would prove Celiacs? Thanks, Rachel
  11. Hi, Well 10 days later, I got my Upper Endoscopy report, so confused at this point and disappointed. GI said my Villi look fine, I do have Gastritis with bleeding, as I mentioned. He said probably from years of anti inflams. He said because I have the positive iGG-iGA test, symptoms and a negative biopsy, he now wants me to take the genetic blood test (HLA-DQ2 & DQ8). He said my neck, cognitive, chills, migraines, fatigue, exercise issues, weird allergies and everything else is probably not from any of this. More confused. On top of everything else, he wants me to come back for another procedure, a Colonoscopy, because one doctor I didn't like said I had a trace of blood and he wants to make sure it's nothing more then my stomach bleeding and hemroids. Great! When I got out of the Endoscope, he told me I didn't have to get the Colon procedure because the blood was coming from my stomach but now he changed his tune. I really hope he is doing this to make sure I don't have cancer or something and not just to take my money for another producers. He is a very reputable GI. Anyway, here are my test results...I asked him to make sure he takes at least 6-8 samples and he said he would. It's hard for me to know from this report how much he actually took and he really didn't sit down with me and show me the report. He just told me, then I asked for the report on my way out. 1) Duodenal Biopsy (Part 2) - no significant histologic abnormality. No evidence of villainous blunting or abnormal inflammatory infiltrate. 2) Duodenal Biopsy (Bulb) - predominatly gastric body mucosa with patchy mild nonspecific chronic inflammation; consistent with ectopic gastric rest. 3) Stomach Biopsy (Antrum). - minimal nonspecific chronic inflammation. A diff-quick strain is negative for helicobacter organisms. 4) Stomach Biopsy (Body) - no significant histologic abnormality. A diff-quick strain is negative for helicobacter organisms. There were four parts of my stomach tested I'm assuming. 1 & 2 say they took "multiple" pieces of soft tissue ranging from .1 to .3 cm. 3 & 4 said they took one from each. Four cassettes of specimens all together. What does this all mean? Thanks, Rachel
  12. Actually, my GI doctor did not confirm Celiacs at all. My regular doctor did based on my 20 year history of symptoms, some deficiencies, raised liver and cholesterol. etc.. plus a positive Celiac blood test. The GI doctor did the endoscopy and said I have a large amount of inflammation and bleeding and he said it could be worsened by possible Celiacs but he said it is from my long term use of anti-inflamitories (for my neck). He said he didn't see anything that could confirm Celiacs but he took at least 6 samples (as I was advised to make sure he did so and I did) and I get my results late next week. He said you really can't tell by the eye. I do not have any ulcer. Just bleeding stomach (lovely!). Anyway, doctor gave me small dose of pain relief for my neck (Neurontin) and I started taking vitamin D in a large, prescription dose and also Prilosec. Today is day 2 of Gluten free and I have NO neck pain for almost the first time in my adult life and my stomach pain is completely gone. Like a miracle. I won't say I am cured, but I am surely happy and on my way. Today is actully my 42nd birthday and also the first day of my new life!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
  13. Made it through my endoscopy today, it was a nice sleep! I was relieved yet crying when I woke up. I have been having so much upper stomach pain since this two weeks of torture started, I thought I could have an ulcer. No ulcer but I do have an inflamed stomach (Gastritis) with a lot of bleeding. The Gastro said its from the anti-inflamitories I have been taking for the last few years. While I believe anti-inflams can cause this issue and knew long term use could do this, I think it's so weird that the intense upper stomach pain started the minute I cut out gluten and started adding it back. Coincidence? My regular Dr. today said I just recently started bleeding. So confused! Anyway, have to wait 10 more days for my Celiac results. Dr. Said he didn't see anything that looked Celiac but said that doesn't mean it's not. Any imput on this? At least I can breath and I had my first gluten free day in two weeks and am so happy, even know I am still nursing my gluten hang over from yesterday!
  14. Well, tomorrow I get my endoscope. Finally. I can't believe I'm saying this but I pray I am Celiac and can finally put closure to my search for answers. Yes, I feel like dying today, but I got to binge on Girl Scout cookies today! For my last time ever, no matter the outcome. I did discover on this gluten challenge that when I eat gluten at night, I wake in the middle of the night and in the morning with severe neck stiffness ands in and swollen, black eyes. I can't eat gluten in the morning because then I can't work. So I do it mid afternoon and just suffer but at least it's not as bad. Today I received some new blood tests back from my Gastro, I may have some low iron going on from what I can tell but you tell me... Total Iron = 119 Iron TIBC = 495 Transferren Saturation = 24 Ferritan = 13 (range is 12-300) Not sure of the other ranges as I don't have the tests in front of me.