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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. Hi, Sorry to here your feeling bad. I don't know if this will be any help but I suffer from kidney stones all of the time. My Urologist explained to me that because I have Celiac disease my body does not absorb fat like a normal body would, anyways celiacs get acid stones, I was just hospitalized last week again because I had stones in each kidney and they would not pass, with acid stones there are pills you can take to try to disolve them but it can take up to a month, not a good choice stones are way too painful to live with that long and you have to be on pains meds all that time , the surgery is better, its nothing bad in and out and there all gone. It sounds to me like it could be stones but I don't know a ct is good to spot them, or a special x-ray ICP it just for the kidneys, regular x-rays don't pick them up alot of times, I had an x-ray at first and it didn't show up, then they did a CT and they showed up and they were not tiny ones at all, they were too big to pass, they were stuck and getting bigger, they can cause inflamation and UTI's, pressure in the pelvic area, feeling like you have to go real bad but nothing comes out. Also if they do a urine test with a cathiter and blood shows up you know you got them. That urine test can also be checked for the acid level, which was high in mine because of the acid stones. also sometimes when theres alot of inflamation it hard to detect stones. My guess is it may be this, or you passed some and it is still swelled. I hope I helped. Good Luck & God Bless. Faith
  2. Thanks for info, yea I was thinking the exact thing everything I like in gluten-free foods has the soy leciten, so I wondered how do people eat??? So I will definately try the soybean oil, and the soy lecetin and see how I react to it. Thanks again, and God Bless all of you also ; Faith
  3. Hi, I guess I have some questions after reading all this. I just got out of the hospital I was in for 10 days. I've been gluten-free since Jan.04, anyways I started getting really sick vomiting, diareaha, my DH got the worst its ever been my soars got so bad and massive my face and neck swelled 3 times its regular size, when I got to the E.R. everyone was just staring at me, I'm getting kind of used to that from the DH. They admitted me right away My skin hurt so bad it hurt for them to touch it, I did go off of my Dapsone last month, just to see if I still needed it or could controll just with my diet, well I found out I still need it. Anyways the Dr. swore I've been cheating, well if I was I wouldn't call it cheating, I'm very careful, it would of been a mistake in not knowing something had gluten in it. I don't like it when I'm accused of cheating if I haven't, because its hard work to stay on this diet. Anyways they did an endoscopy, everything was fine, no inflamation and my villi were still up, so the Dr. said I must not have been cheating, but the biopsy came back positive for celiac. So my? is if I've been gluten-free and everything looked fine how come my biopsy still came back positive for celiac? Just to let you all know the conclusion of my stay, I'm very much allgeric even to touch a rag that someone wiped a counter off with like bread crumbs, flour, ect. I need to wear gloves now, also they put me on a lactose-free, sugar-free, and soy-free diet, they feel I'm also allergic to that stuff from playing around with my diet in the hospital so any info on these diets would be much appreciated I just think soy lecethin is in alot of foods, so help! Faith
  4. The Dr. in Indiana said that she had a rear type of lymphoma that is not something you see alot of, but she also had alot of other things that were going on while she was at the hospital in Indiana , she had gallstones, kindney stones, she starting getting very yellow, (from the problem with the bile), also her endoscopy in Indiana showed no villi and a tremendous amount of inflamation the dr. said she was probably ingesting gluten that she didn't know she was, or was cheating, she got dx when she was 23 back then they didn't have alot of the gluten-free foods that we have now, also they didn't have computers, so she couldn't talk to other celiacs like we can. But we guessed she didn't watch the external things she use-Ever. She didn't know about the cross contamination stuff until later in life. But I guess anyone can get cancer, but I believe we may be a little more prone to it than others , especially the lymphoma. I guess it goes to show us that good dr.s are very important. I feel like we should really take time to know these drs.before we go to them, I went to a few and I to my appt. and had them ask me explain all about the celiac, even went to the Cleveland Clinic and had the gastro dr. ask to tell my story to his colligues ? so they could learn about the celiac and DH. That was I guess my worst experience, now I know to make sure they specialize in the celiac area and I ask how patients they have with celiac and DH. But anyways best of luck to all and God less. I know I am a rambler.
  5. I guess we all seem to have our own ideas about the best way to get dx. and the best way to stay healthy, and its a wonderful forum to get alot of information, and learn how everyone deals with this disease. I guess I'm just one of the people that are on the over pertective side. Yes these tests can be expensive but an endoscopy once a year to check everything out is worth it to me to just know everything is ok. Alot of people that have celiac don't even have symptoms when there celiac is very bad, so its not always easy to tell if everything is going good untill its visually checked out. But you did have a endo. a couple of years ago which is great. I just thought if you've never had one it would be good to at least have it done to see how everything looks. As far as bloodwork coming back normal, my aunt who died in Feb. from celiac, had not felt good for a year before she died, she x-rays, mri's, ct's, lots of blood work, and yes even endo's, and colonoscopys done everything kept coming back normal, until she finally went to the University of Indiana Hospital where they specialize in Celiac disease the Doc, that took care of her thier is the head of Gastro. in the U.s. and is known throughout the world and said "have they looked outside of the intestines with a laporoscopy?" she said no, so thats what they did thier they found cancer in the bile dusct liver and pancreas, but was to far spread, she died very shortly after this. So thats probably why I'm more paranoid than most and also I'm very down on most docs, most tests, because of that . Around are city there are only 6 people dx. with celiac! So they aren't knowledgable with the disease, thank god we are only 45 minutes from Indiana where they do know alot about celiac, and they really help out with any questions. They will even e-mail you back with info. So yes we are very lucky to have each other on this forum to chat with.
  6. I also have DH and have celiac, I was dx threw a biopsy. I have my own thought to this. I believe, that ANYONE, who has celiac should have a biopsy of thier sm. intestine also. But my thinking on this is alot of us have had Celiac for sometime before we get to the point of where we think of celiac being the cause. For example, I struggled with migraines for 15 years not knowing it was celiac disease, just this past year I got full blowwn celiac symptoms, vomitting, diareha, huge weight loss, increase liver enzyme level, DH, so thats when my gastro doc, said heyyou have Celiac, so for many of us we go years with this disease and don't know we have it until we get really sick. So here we go- with celiac it can do alot of damage to our organs, and cause lymphoma, which my died of from celiac this past Feb. so Even people that get dx threw blood work, I feel should have a endoscopy done so the dr. can see what kind of damage has been done also I think a colonoscopy should be done, and celiac pts. should have these done every year regardless how they feel. Thats my thought. So please get the endoscopy done even if you have the blood work done. Best of luck!
  7. I also was very sick with my last pregnacy, which was 4 years ago, it also started about 6-8 weeks into the pregnacy, I got terrible migraine headaches, diareha, vomitted all the time, I had to be fed threw a nasogastric tube, and had to be in the hospital until my 7 month, then I felt a little better, oh yea I also started having siezures which I never had before, and had sores on me, and got gestational diabetes really bad. I was a postergirl for celiac disease, but never got dx with it, I was pregnant with twins, they kept blaming it on my increase in hormaones. After I gave birth I started felling better for a while, then in 2003 started really getting sick lost 72 pounds in 3 months. Sores all over I was a mess, finally went to the E.R. and they called in a gastro specialist which in a matter of minutes looked at me and said I know what it is, Celiac. He did a endoscopy and biopsied the sm. intestine. And sure enough it came back positive. He said he knew just by looking in the scope at the appearence of the intestine it was celiac.
  8. I also had the folds when I had my endoscopy, and hematomas, and my villi were completly flattened and there was alot of inflamation. That was my first endoscopy when I was biopsied for celiac, which came back positive. After I was on the diet for qite a few months he done another one to see if it looked better, and he said it was like night and day, it looked like it was in much better condition. I don't need another one until Jan.05 Well unless something happens where he thinks I need one sooner. Good luck with everything.
  9. Weight Loss

    Hi, I lost 72 pounds in 3 months, thats when I got diagnosed, after the diet I continued loosing weight for about a good 3 months just because it took that long for my system to get back to normal. Now I'm at a pretty steady weight. You need to look at the diet were on, its really a very healthy one, so of course were going to weigh less than we did when we ate donuts, pizza, hamburgers. ( Don't mean to tempt anyone with those words). And you have been gluten free for only a month so I doubt very much your body is back to normal and completely healed yet. If you loose a bunch of weight in a short time after being on the diet for a awhile a would then start to look in finding out why? But its sounds pretty normal to me. Good luck.
  10. I know exactly what you mean, about people staring at you like they don't want to get next to you, they might catch it. When I first got DH I always covered as much skin as possible then came summer, I finally came to the conclusion that this is me and I have a terrible disease, which is enough to worry about, I'm not about to go on worrying about what people are thinking so I woar my shorts this summer and even put a swimsuit on!!!!! That was a big achievement for me! Best of luck to you. Oh yea, I'm very sensitive to everything also, even if I do everything I'm suppose to I can still get an outbreak-who knows why? Do you think stress makes yours worse????
  11. I was dx in Jan. 04 with celiac disease, I started gluten-free diet and started feeling 100% better, I also have DH which comes and goes. But in June I was admitted into the hospital for kidney stones in both kidneys, and had them reforming for 2 months. Now just little ones. But the CT has shown alot of swelling in the mesenteric area, which they put me on steroids- which did not help. The inflamation is still there. I have alot of pain on my sides and alot pain on both kidneys. The doc's don't believe this pain can be from the stones, since they are so small. Does anyone else have this problem? And the diahrea has come back off and on, just since June. Also the right side of my neck feels wierd, its not my throat but to the side it fells like something is there moving but I don't fell a lump. Faith
  12. lily 80: I was diagnosised with celiac disease 4 months ago I also have DH, it took me almost a year to get diagnosised, after I lost 72 pounds within 4 months!! Was very sick DH rash kept getting worse, finally the ER Doc called a GI Specialist told about the rash and fast weight loss, vomitimg, diareaha/constipation, tired all the time, and increased liver enzyme level, the GI Doc said have her come in to my office first thing in the morning I know what this is. So I went in and he told me about celiac disease that next day he had blood work done and did an endoscopy and biopsied the sm. intestine. Sure enough it came back as celiac disease. I am doing so much better I'm still getting used to the diet so I have times I have gluten by accident , but its like 90 % better, I'm keeping food down!!! About the intestinal cancer, I want every one to read this and pass this on!!! My aunt had celiac disease for 30 years she did good on the diet for a long time but then went off of it, cheated alot here and there it adds up! She started feeling bad, had CTs, MRI, xrays, endoscopys, everything came back nomal, finally a doctor went in and done a laporscopy outside of the intestines, where they found cancer lymphomia it was around the liver and bile duct, they sent her to IN. to try to take the cancer out, thought they got it, but she got sicker , they went back in done another laporscopy and closed her right up, it had spead everywhere, they sent her home to let hospice take care of her, she died 2 months ago all of this took place within 7 months!!! It was a terible painful death, she told me to really stick to this diet, because a bite here and a bite there adds up to alot of damage. So please make sure your doctors don't just do the endoscopy to check on the progress of your celiac disease, if you notice even the littliest change in your norm health, ask for a laporscopy to look outside of the intestines, our liver, pancreas, bile dust, all are at greater risk for cancers, and to really see things well you need a laporscopy, remember she had the CTs, X-rays, blood work, MRI, everything kept showing up normal!!! Also I suffered from migraines for over 20 years, once I got on the gluten free diet- Don't get them, unless I have an accident! Amazing-huh? The best of luck to all God Bless and you all are in my prayers! Faith