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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.

ravenwoodglass

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  1. If she was just tested for DQ2 or DQ8 then it isn't for sure that she will never develop celiac. There are other genes that have been found to be associated but not all doctors are aware. The gene I have a double copy of, DQ9, is one example. Here is one research article but more can be found for those interested. Evidence that HLA-DQ9 confers risk to celiac disease by presence of DQ9-restricted gluten-specific T cells http://www.sciencedirect.com/science/article/pii/S0198885912000262
  2. I had horrific leg pains when celiac first reared its ugly head in my childhood. My Mom used to try warm compresses but I don''t remember them helping. Don't know if they were from vitamin deficiencies or not but I had them off and on throughout childhood. I would get cramps in adulthood almost anywhere. My back was the worst. The cramping did resolve gluten free. Don't know if that will be the case for your daughter though. One last thought I know many places are having a very warm summer. Dehydration can also cause muscle cramps so if your dealing with a lot of heat make sure she is well hydrated. I hope she is feeling much better soon. Do get a full panel done on yourself and all first degree relatives. Testing is advised even if folks don't seem to have symptoms.
  3. I like Bakery on Mains granolas, the ones that are oat free. They have a fair amount of protein as they have nuts in them. I also have Cream of Buckwheat if I want a hot cereal or if my tummy is off. It's has a good amount of protein and is really easy to digest. I definately don't eat the cereals like Cheerios etc that have regular oats that are mechanically sorted. They may be fine but my reactions to even small amounts of CC is too severe to risk it.
  4. You could try talking to your Ped and seeing if he/she will diagnose based on a decrease in antibodies gluten free. His blood work is very positive so there really is no doubt he is celiac but you need the 'official' diagnosis to keep him safe in school. There is some research showing that biopsy is not needed in children when blood results are so clearly positive.
  5. Be strict if you are going to do it. It sounds like your body is clearly reacting to gluten so don't take any chances. Take the same precautions you would if you were officially diagnosed at least for a few months. You want to give your body a chance to heal and it sounds like your reactions to accidental gluten are pretty strong so don't risk any CC setting you back from healing.
  6. Sorry you are having to go through this challenge. Pepto Bismal liquid could help with the stomach pain. Be aware that it can make your stool black so if that happens don't worry. Prediagnosis I used Immodium. If you need to eat away from home you could try taking a tablet a half hour before you eat. If you are at home it might be best to just let the D happen as it is your bodies way of clearing out something it doesn't want in it. Some find it helpful to eat their daily dose of gluten before bed. that might help a bit. You are likely not absorbing nutrients well so a Stress B-Complex may help a bit with energy. It will be over soon and you can go gluten free as soon as you have the biopsy done since you have already had the panel done. While you wait be sure to go to the Coping section and read the Newbie 101 thread. There is more to being gluten free than just gluten free food and it will help you learn what you need to keep safe.
  7. You could get another endo with the doctor looking for celiac if you haven't gone gluten free yet. If you have given up gluten already then keep off it and listen to your rheumatologist and when you go back in 3 months have her rerun the test that was positive to see if the levels are going down.
  8. Tessa is correct, you have a positive biopsy and positive blood test. Welcome to the club you never wanted to join. Do check out the Newbie 101 thread at the top of the Coping section as it has a lot of important info. Ask any questions you need to and expect that you may have some ups and downs while you are getting the hang of the gluten free lifestyle. We are here to help in any way we can.
  9. You need to get a Celiac panel done. None of those tests will rule out celiac. You say your 'IBS' has been getting worse. Ask for a referral (if your insurance requires it, not all do) to a GI doctor. Your GP is less than worthless about celiac diagnosis.
  10. Gluten doesn't kill. Celiac undiagnosed does. Thankfully awareness is increasing and many people are not having to go decades undiagnosed any longer. Anything that increases awareness is not a bad thing but I wish this shirt said Celiac Kills instead of Gluten.
  11. Rum

    Thanks. I may try it as Pina coladasicles. I recently saw a recipe for pops that had fruit frozen inside so I may give that a try with this by just reserving a few small chunks before blending.
  12. Great news. Full time jobs can be hard to come by now-a-days. Good luck.
  13. I am okay with lecithin and can have limited amounts of soy oil, like in mayo. Soy protein or flour definately not okay. If you want to test soy protein or flour have her try them one at a time a couple times a day for a week or until she reacts if she reacts sooner. Try them in items that have limited ingredients that you already know she tolerates.
  14. Rum

    I like Bacardi. I tend to stay away from flavored rums but those could be gluten free also but you would want to check. Boy that sounds good. Have to make a store run for coconut water and gluten-free gram crumbs. Do you drain the pineapple before blending?
  15. I don't know of any doctors but it sounds like your body is giving you clear indication that you need the diet. Now for the bad news. If you want to be tested for celiac you need to get back on a gluten diet ASAP. Celiac is an autoimmune disease and if you are not eating gluten your body stops producing antibodies. I wish you luck in finding a doctor who listens to you.