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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 FREE Celiac.com 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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.


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  1. Hi Stef, I have a Stephanie too. She is getting married in less than 6 weeks and we are very busy with wedding plans! The back and hip cracking problems you mention are too familiar! When I walk I can hear the bones in my hips grinding together. Not a good thing. I started hip pain in my mid 20's. I have never been way over my idea weight so it is not an issue of being too heavy. I thought maybe it was at times but my doctor says that I was not that far over weight. I do need to look into some exercise program to get my back stronger. It is frustrating because you need to exercise to feel good but you don't exercise because you DON"T feel good! It gets to be a circle that never ends. My most bothersome symptoms have been the painful BM's, periods, and racing heart. I couldn't even go out shopping without know where the potty. It is a real problem when you are out traveling or shopping, Or on "It's a Small World" at Disney land and you are in this boat thinking you are going to pass out or have a major accident right there in the boat!! That really did happen. I ate a hamburger then got on this ride with my family. I was so SICK I was ready to pass out or vomit. It was horrible. I thought I was going to have to jump out into the water to get out of there! But I managed to do the breathing I learned in Lamaze and that helped me make it to the end of the ride. Celiac makes many things very difficult. Now I can get in the car and go without worrying! My food allergies add to the frustration but I am wondering if they will get better if I take care of this gluten issue. I feel better over all that is for sure. I have been adding little things back in my diet just to see what happens. Nothing gluten though. I seem to be able to handle milk ok. I am happy to know some chocolate can be eaten. I have found that I need to eat smaller meals throughout the day. I am not sure if everyone is like that or not. I guess one of the things for me is going from a junk food diet to a more healthy diet. It took a while to get used too! Lee Ann
  2. Hello, I have been trying to stay gluten-free from about November 2004. I was diagnosed with IBS about 20 years ago. As the years have gone on my problems have become worse with food allergies and terrible bowel problems. Severe pain with loose BM. I have noticed several improvements since going gluten-free. I no longer have to run to the potty!!! I have fairly normal BM for the first time in a very long time. Generally no pain with BM. My acne on my neck and upper back and jaw line is gone!! My heart does not feel like it is trying to climb out of my chest anymore after eating! No longer winded, "psoriasis" on my joints is completely gone. I have been officially diagnosed with Psoriatic Arthritis and I have to say my joints feel pretty good now! I do have disk degeneration in my lower back so the diet has not helped in that area. I am 41 and I do worry about that. My periods are much easier to tolerate now. So even though I don't have an official dx I do think I have found the answer. My doctor was thinking Crones but he was also very interested in what I would find out by doing gluten-free. I have not gone back to the doc because my insurance is not that good. Anyway, I feel like I may not be getting enough vitamins. I have added milk for calcium and potassium. I was getting leg cramps. I eat mainly a low carb diet with some chocolate thrown in! Yum! I keep Heresy's bars in my purse. I eat processed cheese. I don't think they have any gluten in them. If they do I seem to be handling them ok. I do have food allergies that limit my choices. I seem to be intolerant of chicken. Although turkey is fine. I can not have anything mold based so regular cheese is out. But I am wondering about mozzarella cheese? Any one know if that would be ok? I tested allergic to: Corn, oranges, tapioca, mushrooms, perch, hazel nuts (walnuts burn my tongue), apricots, onions, arrowroot......I am an odd person aren't I? I do not tolerate potatoes very well. They make my heart race. Pop corn makes my face swell. Rice gives me terrible tummy cramping. I am looking for some foods I can actually eat that will fit into this mess that I am in. I have lost 25 pounds since November and I do need to see what foods I can add to stop my weight loss now. But I want to stay feeling good too. Any ideas? Thanks so much, Lee Ann (I hope this is in the right forum"
  3. Hi Deb, Thank you. Did you feel like you were nuts? Or being treated like you were? I have become so tired of feeling like the doctor is rolling his eyes at me. If I could find a good woman family doctor I would do it! I am not sure if a woman would be any different, hopefully she would. I was told that I was having panic attacks when I was in my mid 20's. So of course tid bit is in my records and in the doctors mind everytime I go through their door! I do not visit the doctor often. I have not been there in over a year. I just got so sick of it I decided I would NEVER complain to the doctor again and figure it out on my own. I am not depressed. I am not having panic attacks. I have nothing to panic about. I am generally a happy person. I have 6 children at home(2 of the 6 are our biological daughters. The other children are adopted) 2 waiting in Haiti to come home (waiting for the adoption to be processed), and I am VERY happy with my life. It is sad but when you get to this point you have basically lost all confidence in doctors. I have even been tested for Lymes and Lupus because of mysterious rashes. You would have thought the doctor would have gotten a clue when those tests came back ok! I have done Atkins twice in the past 6 years. Both times I had wonderful results in the way I felt and weight loss. I felt so much BETTER that I did not even care if I lost weight. The problem has been sticking to it. I think I will have more luck maintaining the way of life if I am able to stay gluten-free instead of carb free. gluten-free has a bigger variety of things I can have in my diet. Eating meat all of the time is hard to tolerate. I had been doing a strict lo carb diet until about the middle of July. I lost it when the fresh fruit pies started coming out! Then birthday cakes............But I have been struggling for the past 2 months with overwhelming fatigue and other problems that I know are diet related. Same old stuff as before only worse. It has taken years of experimenting with my eating habits but I think I have finally figured it all out. It is like a jigsaw puzzle that had to be pieced together. My siblings have very obvious allergies so they got all of the testing and meds they needed while they were young. I did not present with anything obvious so no one knew. My mother has the same type of problems I have. I need to get her information on Celiac. I have not been officially diagnosed but it really would not make a difference one way or the other. Why give the insurance company another reason to raise my rates!! Thanks so much! Lee Ann
  4. Hi Richard, Thank you for you help. The doctors have discounted many of my complaints because I am not "unhealthy" looking. My weight has always been about 20-30 pounds over the top range of my ideal weight. I have become so frustrated by the amount of pills the doctors try to get me on. I have no intention of taking any more meds than necessary. I have to take my bp meds and I also take a beta blocker for my heart rate. Other than that I have refused the other meds for pain or what ever else. I went through a series of tests including two MRI's just about 3 years ago because they thought I may have MS. I do have very strange skin sensations BUT I get almost total relief on a low card diet. It has taken many years for me to put this all together. I have decided I am not going to live the second half of my life in misery. I think what I need to do is find another doctor. Getting another skin test would be a good idea since the other one was not conclusive. Thanks so much! Lee Ann
  5. Hello, I almost don't know where to start. I have been reading through many of the posts here. I have had health issues my whole life. In my first year of life I received one anti-biotic shot per week. At the age of two I started taking gamma globulin (not sure on that spelling) shots. That went on for 2 years. During that time I was given a small pox vaccination and had a nasty reaction to it. I broke out in sores on my torso. Recovered from that and then they gave me ANOTHER small pox vaccination....that one took and I was ok. During my childhood I would eat many odd things. I had a huge craving for rocks and dirt. I ate paint, paper, glue, some household cleaning products, anything that was metal was appealing to me. Drove my mother nuts. I had problems with milk but my mom did not realize it at the time. When I was 12 I broke out in what they thought was ring worm or eczema. It rapidly spread to all of my joints and my tail bone. It was so bad and itched a lot. I went under the care of a dermatologist at that time. He treated me for eczema with little success. I was miserable. I would often vomit after I would eat, not on purpose, and I would get a terrible head ache. We had a lot of high carbs while I was at home. Lots of corn, fish, breads, potatoes..... I could not learn in school. I passed - barely. I was in a fog. I was over weight and my body hurt. My skin was a mess and I could not make it through a day of school without wanting to take a nap. After I had my first baby at the age of 20 I had my gall bladder removed. That helped my stomach feel better. But I continued to have problems so I went through allergy testing. I found out I was allergic to many of the things I ate on a daily basis. Fish, nuts, mushrooms, yeast, oranges, apricots, arrowroot (tapioca), onions. Those are the things I tested highly allergic too. I immediately went on a very strict diet. Basically low carb. I lost 60 pounds, my blood pressure was down, my heart rate was down, my "eczema" went away...... But that was hard to stick too. I started to add things back to my diet and when I did that the intestinal stuff started. The kind that you better be within a few feet of a potty or you are in real trouble! I thought my problems were due to the things I had tested allergic too. But I was finding just avoiding those items was not working any more. My "eczema" came back with a vengeance. My joints were covered and it started working it's way up my legs. I itched so bad I couldn't sleep. I had to go on antibiotics for infections I had caused from all of the scratching. One doctor did a biopsy on the skin patches and said it may be psoriasis, but it was not conclusive. They did not know for sure. So over the next several years I struggled. I thought my agony was due to my weight, but I have never been that over weight. I am 5'6 and have weighted at my most around 180. So I have never been severely over weight. I tried the weight watchers diet and that almost killed me. I ate whole wheat everything. I broke out in a mess of sores along my hair line, chin, and upper back. The sores reminded me of a chicken pox. This is getting to long so I will wrap it up. I am 41 now. My doctor has tried to diagnose me with everything under the sun!! MS, Psoriatic arthritis, Chrons, IBS, panic attacks, FMS, trigeminal neuralgia.....Then he gives me a pill and thinks I will be happy! I don't want medication. I want to know what the problem is. Two years ago I went on the Atkins diet. Lost 35 pounds, my "psoriasis" cleared up, I had no more sores on my back or hair line, no more acne, I did not have loose stool for months (I used to get pain so bad that I had to call my mom for help because I thought I was going to vomit and pass out on the floor. I was BAD) My body pain was gone, my vision was better (no more floaters), I could stay awake all day, much more energy! I started to add carbs back to my diet and I am finding I am a MESS again. So I just started lo carb again two days ago. I am feeling a bit better already. It is just pretty hard to stick to it. But the big thing that motivates me is being able to eat and not run to the toilet. It really restricts my life. I can not eat out, I can not go shopping without knowing where the potty is. It has been very frustrating for me. Another benefit I have found is around mid cycle. I have so much pain for the last two weeks of my cycle when I am eating a normal diet. It is so bad I can hardly sit down! I have severe low back pain while eating grains but it was totally gone when I was eating low carb. I am not familiar with gluten free yet so I am going to stick with low carb until I learn more about gluten-free. I am allergic to yeast but can not seem to give up my cheese! funny thing is everything I LOVE to eat seems to make me sick. Thank you for listening to this. Do I sound like I am anywhere near an answer by coming to this board? Oh, and I read some threads about people eating the tips of matches, I though I was the only one who ever did such a thing!!! I used to chew on them too. Those cravings are not such an issue any more. I have never tested anemic in my adult life but I did as a child. Can it take this long to figure out you have Celiac? If that is in fact my problem. My doctor said I have white flecks on my finger nails but he related that to psoriasis. funny how my "psoriasis" goes away totally when I don't eat grains! Right now if I eat the wrong things my heart races, I get sick to my stomach, and I get a smashing head ache. It does not take long to learn what NOT to put in your mouth with those sorts or reactions. I have no idea if I have Celiac or not but I do know avoiding grains it a good idea for me. It makes it hard to stick to the food pyramid!!