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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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  1. Hi Hollye, Testing requires 12 weeks of eating gluten for the blood antibodies test, and 2 weeks for the endoscopy. That's called a gluten challenge. Getting tested later would require her to do that gluten challenge, which could be very unpleasant for her if she does have celiac disease or NCGS (non celiac gluten intolerance). Gluten ataxia is a condition that some people with celiac disease get. Gluten ataxia affects the brain and can cause difficulty walking and coordinating muscles, and possibly many other symptoms as Ravenwood said. Gluten ataxia could explain what is happening to your daughter. The effects should be reversible with a gluten free diet. But recovery can take months or years, depending on the individual immune system and their ability to stay completely gluten-free. The treatment for NCGS and celiac disease is the same, following a strict gluten-free diet for life. There are probably about 6% to 10% of the population that have NCGS, while only about 1% have celiac disease. There are no test for NCGS yet. But someone who has symptoms relief from going on the gluten-free diet, but tests negative on the celiac disease tests, may be NCGS.
  2. Hi Patrick, Welcome to the forum! What you are describing is not unusual for celiacs new to the gluten-free diet IMHO. The problem with celiac disease is it is an immune response by the body. The immune system does not stop making antibodies instantly when we stop eating gluten. That would be nice, but it doesn't work that way. Instead the immune system slowly winds down and tapers off the immune response, as long we are not consuming any gluten. That tapering off process could take weeks, months, or more. Generally it seems like people have a rough time for the first couple months and tend to slowly get better after that. But, during this recovery, even a small amount of gluten kicks off a renewed autoimmune attack. So it's very important to remove any possible gluten to heal the gut. The best way to recover quickly IMHO is to eat mostly whole foods for 6 months. That means meats, veggies, nuts, and eggs. Also it can help to avoid all dairy for a month or two. If you have bloating that is often a sign of poor digestion. Poor digestion can happen for many reasons, but for newly gluten-free celiacs it is often due to damage to the gut and a bad mix of bacteria in the gut. Those bad bacteria can multiply because the gut environment is not healthy. They (bacteria) love poorly digested carbs and sugar, and produce lots of gas (bacteria farts?). Avoiding sugar and carbs like starches (plain white rice, white potatoes etc) can help starve the bad bacteria and prevent the over multiplying and causing symptoms. People often call this initial gluten-free period of symptoms gluten withdrawal. While it can take a year or more to to get fully recovered, many people make slow steady progress over that time.
  3. I eat at Texas Roadhouse sometimes. So far no problems. At our local one you can ask what is gluten-free and they will tell you what is safe. I can't vouch for any other location since I've only been to our local one in Athens, Ohio.
  4. Hi, If the whole family is going gluten-free, then it will be simpler. If not, then you will have a shared kitchen with gluten eaters. You'll have to watch out for cross contamination in condiments like peanut butter, mayo, jam etc. You'll need separate containers of these foods just for her. Any shared foods with gluten eaters is risky due to potential contamination. She'll need a separate gluten-free toaster. And gluten-free collander. You can't stir a pot of regular gluten pasta and then use the same spoon to stir gluten-free pasta. A shared kitchen is possible, and I use one myself. But I have a separate small refrigerator for my food. I rinse silverware and dishes before using them. I also cook my own food and don't trust others to make gluten-free food usually. You can get Mission brand corn tortillas pretty cheap and they are gluten-free. Udi's gluten-free bread is available in some stores. You can also make gluten-free corn muffins etc fairy easy. The immune system attacks and destroys germs that are too small for us to see without a microscope. So it doesn't take much to start a reaction.
  5. Hi TS, Anxiety, depression, insomnia and anger are fairly frequent issues for people. Did you know that celiac can directly affect the brain? There is a condition called gluten ataxia associated with celiac disease that can cause difficulty walking and other symptoms. It can cause UBOs (unidentified bright objects) that show up on an MRI scan. You are definitely not alone in having mental symptoms. Time is a great help to overcoming those kind of symptoms. Time and a clean diet of mostly whole foods can do a great deal to heal our bodies. It may not feel like you are healing day by day, but as your body shifts from self destructing to healing and recovery things should start to improve. The immune system is very powerful and it takes time for it to stop attacking. Building replacement tissue in the gut takes energy and vitamins. The less stress we put on our bodies the more energy there is to heal. I don't know if you are a caffeine addict but it might be worth slowing down on coffee etc for awhile. Also check your vitamins to see of they have selenium in them. Selenium is a trace mineral we need for good health. You can get selenium naturally from Brazil nuts. There is an herb called Rhodiola Rosea that may help some symptoms. I get the Vitacost brand, but there are others that sell it too. It could be something to try. sleep depression&
  6. Welcome to the forum Mary Ann! You are in a great place to get good advice and counseling. The University of Chicago celiac center is world renowned for their research and programs. You could contact them and probably get the help you need for a diagnosis of DH. DH is a condition that only people with celiac disease get. So if you have DH you have celiac disease. Also, people with DH can tend to not test well on the blood antibodies tests. The IgA antibodies are in the skin instead of hanging around the gut like they are supposed to. Your rash sounds like DH To me, but I am just going on what I've read about it.
  7. I am sorry to hear about your new diagnosis Ennis. I've had mucus and blood before but for me it was related to dairy. As long as I stay away from dairy, no problem. Or not any like that anyway. I know they have some drugs treatment for UC but am not sure what they are called. Hopefully they have something that will help a lot.
  8. Hi Hopeful, Most of the time a doctor in the USA won't give a celiac disease diagnosis without the endoscopic proof. The gluten challenge is 2 to 4 weeks for the endoscopy and 12 weeks for the blood antibodies. How worthwhile it is to be tested via an endoscopy is up to each individual. Some people need the full diagnosis to convince them to stay off gluten, others don't. Since you have antibodies there is a real good chance it is celiac disease IMHO, but I am not a doctor. Heck I don't even play golf! I never had the endoscopy myself as I'd been gluten-free four months before getting into the doctor. Doing a gluten challenge wasn't workable for me as I was struggling with work already. Plus I knew I was never going to eat gluten again on purpose after starting to feel better on the gluten-free diet. Life without gluten is much better IMHO. At least for me it is.
  9. Hi AshMarBorr, It's a good idea to review everything you are eating to see if any gluten could be slipping into your diet. The first thing though would be a new blood antibodies test to verify if your gliaden antibodies are raised. Being cold could be a symptom of low thyroid hormone. Welcome to the forum!
  10. Hi Jess8989, Welcome to the forum! If you have been diagnosed with DH, then you have celiac disease. Only people with celiac disease get DH. To test for DH they take a small skin biopsy sample from the area next to a bump/lesion. Then they test it for IgA antibodies. The sample has to be from skin adjacent to but not directly on the lesion.
  11. Hello hopeful, Welcome to the forum! I don't know about URI's and celiac disease myself. But I do know celiac disease can affect any part of the body, if not directly then by nutrient deficiencies. Did you get tested for celiac disease before going gluten-free? If not you should consider doing that right away to find out for sure. Celiac disease is a lifelong condition and it's good to know for sure if you have it. If you are going to be tested you need to keep eating gluten until all testing is done. The testing is a blood check for antibodies to gliaden, a protein in wheat, and then an endoscopy to check for villi damage in the gut. It's much easier to be tested before going gluten-free than it is after being gluten-free for a few months. You would have to do a gluten challenge of 12 weeks before testing later. That can be very unpleasant if you do have celiac disease.
  12. Hi Gillian, Welcome to the forum! Four months is pretty early in the recovery process IMHO. That doesn't mean you can't do better and have improved digestion though. In celiac disease, what we eat is our medicine. Or our poison in some cases. So it is very important to choose foods that are good for our body and also easy to digest. Generally, whole foods like meats, veggies, nuts, and eggs are good choices. Having gut damage can cause our guts bacterial flora (microbiome) to get all out of whack and nasty. That can cause lots of symptoms by itself. Improving our gut biome requires healing first, and that means staying away from foods that cause upset. Sugar and carbs are bad for us when healing, as they feed bad bacteria that aren't good for us. So it's helpful to avoid sugar and carbs for a few months. That usually means avoiding processed foods which are loaded with starches and carbs. Dairy is often a problem at the beginning too, and some celiacs also react to oats. So it's a good idea to avoid both of those for a few months too. Digestive enzymes may help, Plain, simple foods are good.
  13. Dairy is known to cause C for some people. So it makes sense to cut it out for a while to see if that helps. A lot of these issues are things we can only learn about by trying it ourselves. We all have our own individual guts, and have our own individual reactions. So we have to test for those reactions ourselves. There is little help from the medical community that can identify food intolerances for us. For new people with celiac, it is generally better to err on the side of caution than not. The goal (IMHO) is to help people heal the fastest they can. While dairy is not a problem for all people, it is a significant problem that affects many of us. You don't know how it will affect you if you never cut it out. It may not help anything, then again it might help a lot.
  14. The edit icon functions are correctly showing now Scott. Thanks for the quick fix!
  15. Welcome to the fun house PO'd ! Or the forum I should say. Maybe we should call you "squirrel" from now on? It may seem impossible to live gluten-free at the moment, but there are a lot of us here who are doing it, and have for years. Quite a few of us have additional food intolerances beyond gluten. We may have to be a little creative in the kitchen to make things work. But there really are a lot of food options available. It might take a while to figure them out and get used to the change though. I hope this doesn't raise your dander, but I think I read some where that people who have gastric bypass surgery are at a higher risk of developing celiac disease. One of those side benefits they gloss over perhaps. Your celiac is probably contributing to your symptoms. Celiac can cause a multitude of symptoms, and they can be spread all over the body, not just in the gut. So going gluten-free may alleviate symptoms you don't expect. You'll find it does get easier in time. I am not saying it gets easier in a few days, but over months or years you can adjust and adapt. And feel better too. Withdrawal is something we just have to go through. There are some things that might help. Pepto Bismol can help soothe the gut and reduce pain. Plain aspirin can also help. Peppermint tea can help get gas out if you are bloated. Digestive enzymes can help process foods. I had gut spasms about 6 weeks after going gluten-free. Then they stopped. It's good to read a lot on the forum while you are starting the gluten-free diet. There is a lot to learn about celiac disease and the more you know the better you can take care of your body. Celiac can definitely affect mood IMHO. I used to have anger issues myself. That went away after going gluten-free. Simple, well cooked foods are a good idea for you. Think hamburger instead of steak. Cooked veggies instead of raw. Dairy probably is not your friend to start out. I am not suggesting cutting it out forever, but maybe a few months. There are dairy subs you can use in the meantime. Rice or almond milk, (not soy), Daiya cheese, etc, It's good to go gluten-free, as we can end up eating a much healthier diet than many people do. And the payback is not years away, but right now.