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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 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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Hi All pretty new here. I got the results of my biopsy today and everything came back normal, I haven't had any blood testing for celiac but small intestine biopsy came back normal. I feel like I'm getting the run around, I have been sick so much since 1997 to start I was having utering hemmoraging which resulted in an emergency hysterectomy so I would not bleed to death I has lost so much blood and was so anemia, my hemaglobin was 7 but they never gave me blood and after the hysterectomy , it took me a year on iron medicine 3 times daily before my iron was back to normal but my whole body iron count has never returned to normal. They couln't find any reason why I was bleeding, my uterus was healthy looking, no cancer. Then 3 months later I get hepatitis virus of my liver and my liver is inflamed in and out of hospital 3 times off work for 6 weeks, not to mention all the work i missed from the bleeding off and on for over a year , I hemmoraged 4 times over alittle over ayear. Ok irecover from hepatitis virus then 7 months later I get mono (the kissing disease) ha ha I hadn't kissed any body with it. Took me about 6 months to recover from that completely, off work for 6 weeks with that also. Then I am tired all the time and diagnosed with hypothyroidism, ok still tired all the time, get every virus that seems to come around. Have essential thrombytosis, can't find ou the reason why but elevated platelett count between 500 and 700 thousand, not to mention that now I bruise so easily that if my 15 pound dog clims on my lap I get a bruise where every step he takes, I look like somebody beat me up. Ok I just wanted to vent and ask for everybodsy help, my own gp tells me ther is nothing wrong with me and she claims that she can't find what is causing all of these problems, I don't have diarrhea but constipation instead and acid reflux problems for several months plus neausea and sometime vomiting in the morning. I am taking prevacid twice daily but still nautious. Please help somebody I know im not crazy and no body seems to want to get to the bottom of this problem.

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DEMAND to have a routine blood culture performed. This would most likely identify any active virus, fungus, bacteria present in the system.

Also, try to insist on having a C-reactive protein test run, along with the CBC, ANA, and Sed Rate, if these tests haven't been performed in the last 6 months. Have an A1C test performed to rule out Diabetes.

Odds are one of them will at least point the way to the path of the active problem which is at work, meaning that you will have the doctor's attention.

Thankfully for you, the endoscopy is the most precise test available for the detection of Celiac disease. If he said your test was normal, that means you have no damage to the villa. It may not rule out the possibility that you are in the birth stages of the disease, but even that is unlikely.

Evaluate any and all prescriptions and over the counter prescription medications you may have begun taking within 6-9 months of the onset of your new symptoms. As is the case with any and all medications, new side effects can always appear in individual people, regardless of whether or not they are known side effects.

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Also check the ingredients of the medicines...they sometimes contain starches etc as fillers or binders ...good luck!

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Your digestive problems may be caused by the Prevacid. Ask your doctor to prescribe another medication. Or better yet, tell them to fix the cause, not the effect!

As for your biopsy, find out how many samples were taken and from what parts of the small intestine. This is crucial to getting accurate samples. Also, several so called "normal" biopsies came back positive for celiac disease when given to a pathologist experienced in Celiac for a second opinion.

You may also wish to consider a new doctor. Much of the complaining on this and other boards about doctors is partially the fault of the patients for not changing doctors. Let's face it, just like not every auto mechanic is equally competent, not every doctor is equally competent.

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    • I would say get retested, to be sure, do a gluten challenge with her where she eats gluten for 12 weeks, not much just a half slice of bread a day or a wheat cracker for the blood test and 2 weeks for the biopsy. You mentioned bumps, and dry patches...this might be DH from celiacs and if it is you can go to a dermatologist and they can test it. In some people with DH reactions to gluten, their intestines do not show much damage as most of the antibodies are directed elsewhere. In this case you would have your symptoms. Now Celiac is a autoimmune disease that commonly has other auto immune diseases associated with it. NOW if your daughter has the gene for it she could have another automimmune disease I am not very familiar with and someone else might be able to help you more on suggestions for testing. Now in my personal opinion it sounds like she was still getting into gluten when you said she was off of it. NOTE gluten is a tricky bugger, it is a protein smaller then a germ that can stick in cracks and scratches on all your utensils, food prep area, knifes, etc. As a flour it can hang in the air for hours and even be inhaled effecting some of us. It is present in a lot of things we do not consider, like makeup, playdough, shampoos, seasonings, sauces, even some dry wall spackles.  Now if she is in a shared house hold with other kids and not everyone is on this diet she has likely been getting into gluten somewhere, like touching glutened surfaces the other kids touched after eating gluten foods then putting her hand in her mouth or on safe foods. Or just randomly eating gluten foods, note symptoms can last weeks and wane from how it is effecting you. It does not take much to trigger symptoms you might have to be more careful and move her to a whole foods only diet, and have a separate prep area, utensils, cooking zone for her if you wish to keep fixing separate meals for her vs the gluten family.     I would suggest just changing the entire family over, anyway perhaps start with a separate fold out table, use freezer paper to line the prep area, a microwave, mini toaster oven, and some microwave cook ware like steamers, steam bags, etc. and using gloves to fix her meals. She will need her own condiment jars (crumbs in hte jars) and area for safe snacks. I would suggest getting her only gluten-free CERTIFIED FOODS for now. You can find some whole food healthy snacks at mygerbs.com, and a few other places. I will provide a link to gluten-free food list. PERHAPS you can change the entire family over....now days it is more like changing brands as everything you used to eat is available in a gluten-free brand. ALSO have a lot of dairy free options there. https://www.celiac.com/gluten-free/topic/117090-gluten-free-food-alternatives-list/  
    • Hi wondering if someone could help. my daughter has mildly raised TTG  levels and the gliadine levels, she has one Coeliacs gene, but her biopsy came back negative.   We have kept her off gluten (and low dairy) for nearly a year to see if her symptoms improved.  They haven't.  But I don't know if they are related to gluten specifically.  Just wondering if anyone has other suggestions that may be going on with her.  Her symptoms are: - Short stature, she's nearly 9 and my 6 year old boy is nearly bigger than her - bumps on back of her arms - urine leaking and occasional soiled pants, which could be from constipation she has at time's - sticking out stomach - dry patchy rashes on her face - joint pain sporadically - vomits every 6 weeks, but hasn't had gluten and seems to be no food connection - reoccurring thrush She had gluten last night at a party and was fine today. I'm a bit lost and not sure where else to turn.  Thanks for any help.
    • We have gone gluten free, our whole house, as of a month ago. It was pretty seamless since I had been gluten-free for 5 months last year. I have found many good recipes, and my picky husband and one of my boys who is also a picky eater, even prefer many gluten-free recipes to the regular ones.  My husband did see my point about the size of the gluten protein means nothing. Its a gluten protein period, that's what you are avoiding. It doesn't matter if its hiding in the scratch of your baking sheet and you can't see it. You can't see the wind, but it's still there. I hear you on the anemia. I've been anemic for several years, I just thought it as because I was getting a little older. Has your anemia gone away or do you still have problems with it? 
    • Ennis, it is made out of metal, coated with plastic I think. You have such a hard time, my heart really hurts for you. But you are such a support to those on this board, and a great teacher for those of us who are new.  
    • Thanks everyone! I think its hard for people to fully accept because they cant see the damage it does every time you get glutened. It's invisible. Im glad to know I wasnt being paranoid. I sure was when I was first diagnosed. I laugh at myself now, but its a pretty steep learning curve. 
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