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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.


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ravenwoodglass last won the day on January 10

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  1. The sites main purpose is to sell you something. May be a bit of good info in there as I didn't read everything. I do know that I was close to death when I was finally diagnosed and I healed following just the gluten free diet, avoided dairy for a couple months and later did have to drop soy. It took a bit of time but gluten free I am healthier than I have ever been. I am not saying that the SCD diet might not be helpful for some folks but I think you could find info on it for free somewhere or from a good naturopathic practitioner or dietitian.
  2. I will never understand why doctors discount positive blood work if damage happened to be missed on the endoscopy. If you have positive blood work you have celiac since the tests are for the most part specific to celiac disease. Good to hear you are back on the diet and do read that Newbie thread that Cyclinglady recommended. Do ask any other questions you may need answered.
  3. It isn't unusual for very young children to have false negatives with testing from what I understand. In addition some doctors only run one or two tests out of a panel. Can you get copies of all tests? That might be a good idea as some doctors will call a low positive a negative or miss changes in the intestines that are not full villi destruction. Although wheat glucose may be considered by some to be so processed that it would be gluten free I wouldn't touch it. There are lots of candies and lollies that would be safe for sure you should go with those instead. You might want to get ahold of the neuro and see if he will 'write a script' for you to show to folks that doubt that your children need to be gluten free. You could also consider telling a 'white lie' and saying you had them retested and this time the tests were positive. Whatever you need to do to keep the children safe from folks that think 'oh one cookie won't hurt'.
  4. Welcome. You have a great neurologist. Please continue to follow his advice, forever. He can write the needed letter to keep her and your youngest safe in school or daycare. With neurological impact personally I would not even think of doing a challenge later. I had severe neuro issues that began around her age and wasn't diagnosed till middle age. While the effects can be subtle for a long time they can impact mood and learning as well as the ability to walk and more. At her age any impact can likely be reversed, you have seen that with the decrease in the absence seizures. Do read the Newbie 101 thread at the top of the coping section and make sure to test all first degree relatives even if they seem to be symptom free.
  5. You might want to go to your closest celiac support group (check with local hospitals for ease in locating one or two) and ask to interview individuals there. Interviewing teachers and school kitchen staff might also be helpful. You will learn much more in a face to face interview and your participants will feel safer.
  6. I use that brand myself. I find it at my local Wegmans. It is so nice to find OTC meds that are clearly labeled. I thought it was an in store brand also but it seems to be available in different markets
  7. Welcome to the board. I agree you should be tested for celiac. Make sure you don't stop eating gluten until all celiac related testing is finished. I also seemed to be allergic to everything before I was diagnosed. I had skin prick testing for 99 substances and the only thing I didn't react to was beech trees! My very savvy allergist said after I was diagnosed that was a big indication to him that I was likely celiac. He then referred me back to my GI doctor who confirmed his suspicions. Family can be a bit hesitant to believe our diagnosis. I know my family was sceptical but as I recovered they became more suportive and even ended up getting the advised testing for first degree relatives. I hope you can get some clear answers soon and can begin recovering. One last thought you mentioned a rash. Celiac can produce a rash called dermatitis herpeformis (DH). A diagnosis of DH is a diagnosis of celiac. You may want to see a celiac savvy dermatologist. Do check out the DH section of the board for more info on that condition.
  8. Welcome to the board. What makes you think what you passed was the lining of your intestines? There are times when my intestines have been so inflamed that I was passing a lot of mucous that looked like 'sheets' that coated the stool, (Sorry for the TMI) along with some bleeding. Could that be what you saw? Are you having active bleeding? I am not refering to seeing a bit of blood on the TP or even a pinkish tinge in the toilet but blood that is flowing. If so you may want to head to the ER. Have you been diagnosed with celiac or do you have NCGI? If not make sure you keep eating gluten so you can be tested. You could try calling your doctor and asking to be put on the cancelation list if you are able to go in on short notice. That might help you get in sooner.
  9. Welcome to the board. Your ped should be able to refer your little one to a physical therapist to help with any issues with balance and coordination if needed. It is quite possible to recover from ataxia, especially as young as she is. It can take a bit longer than it does to recover from symptoms like stomach issues but chances are very good that she will. An oven can be shared with gluten foods as long as you aren't cooking on the racks directly. You do want to avoid baking with gluten flours when cooking gluten foods though as flour can become easily airborne. You may want to read the Newbie 101 thread at the top of the Coping section as it will have a lot of info for you. Do keep in mind that since she is diagnosed that all family members should be tested even if they don't seem to have symptoms.
  10. Gerald when you tried to get off the Paxil did you do it under a doctor's care? An MD would be quite helpful with that if they really know what they are doing and if not find another doctor. You would need scripts for decreasing dosage over time and then guidance when you get to the point of actually stopping. Have you told your MD or a GI doctor about your over the top use of coffee enemas? Your doctor may want you to have a colonoscopy to check how much damage may have been done and an endo would be a good idea at the same time to see why you feel you need to take an over the counter drug like Prilosec. Your doctor may need to help you taper off this drug also. If the reason you take it is stomach pain that really needs to be evaluated by an MD. I was told to take that at my celiac diagnosis. I refused and used Pepto Bismal liquid when I had pain. It would work with one dose and not mess with my stomach acid and isn't addictive. I am sorry you have had so much trouble but you have to stop treating yourself and find a GOOD team of doctors to help you. You say you need to find a naturopath so make sure you find one who is responsible and will work with your MDs to help you. While you are getting off the Paxil it might be helpful to see an acupuncturist to help you deal with the process and perhaps even be helpful with some of your symptoms without the use of drugs or things like coffee enemas etc. Do be sure when you see your MD to bring a complete list of all supplements, meds OTC and scripts and dietary restrictions you are self imposing.
  11. Your doctor should be able to clarify why he wants to do the test. Just one thing to add and that is to make sure that he has let the x-ray dept know your solution needs to be gluten free. Your drink will be thin not thick and chalky. I have had this test done a couple times. The first time the doctor didn't know the barium needed to be gluten free and I didn't even make it out of the hospital before the D hit hard. Second time I had the gluten-free solution and no issues.
  12. So sorry you are going through this. I also had lots of swollen lymph nodes and they do take a very long time to go down. The night sweats are awful. I dealt with them for too long myself. Thought I would chime in on what gave me a bit of relief. I kept a fan next to the bed that had a remote. When that awful heat would awaken me I would throw off the covers and turn it on full blast setting the remote timer for 1/2 hour. It didn't stop them but it at least let me get back to sleep. I also used flannel sheets over a water proff mattress pad. That way at least if the bedding got damp it wasn't clammy. Don't know if that will be helpful for you but hope it will. Make sure you are drinking plenty of water to replace what you are losing at night. Dehydration can make us a bit dizzy although that may not be what caused you problem last night extra fluids won't hurt. Do take the advice to drop the gluten-free oats. Wait until you are well healed before you add them back in. I hope you get the results of your tests soon and your mind is set at ease about the possibility of lymphoma.
  13. That sounds like a very scarey reaction. If you don't have an epi-pen perhaps you might want to get one from your doctor. You are lucky the large blister was not far enough down your throat to obstruct your breathing. Polaner makes an all fruit jam that I use that might work for you. It does have 35 cal per serving but has no sugar or sweetener other than from fruit added. I have also seen recipes for frezzer and refrigerator jams and preserves that you may want to try.
  14. Welcome. You have found a great place for information and support. There is a 'Newbie 101' thread at the top of the Coping section. That has a great deal of good information for her and other family members. You are a wonderful Aunt to try and help her get used to the gluten free lifestyle. It can be a bit overwhelming at first for both the person diagnosed and their family. Hopefully the hospitalizations will soon be a thing of the past but it can take some time to fully heal. If she has any brothers or sisters they should be screened along with her mother and father.
  15. Has an ovarian cyst been ruled out?