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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 Kait, You'll probably get more responses in the forum than a blog. Post diagnosis or the Coping With Celiac forum sections would be good to post in.
  2. The US Army experimented with using casein to keep soldiers alert. So it may have that affect. The thing to remember is that your gut is damaged by celiac disease. So foods that should be digested fully may not be broken down completely. So with the leaky gut effect, it is possible some casein protein fragments might get through the gut / blood barrier. I think this is what happened to me once after going gluten-free when I ate some dairy. I was wide awake for 3 and a half days before being able to get a couple hours sleep. Then was able to sleep more each following day. That never happened again but I also gave up eating dairy. What I am suggesting is that things that might affect you now while you are healing may not be a problem alter after your gut is in better shape. So giving up dairy for a few months may help your insomnia now but when healed dairy may not affect it. We are all different so YMMV as they say.
  3. Also consider that wheat, rye and barley, while the common problem foods for celiacs are not the only foods that can cause the autoimmune reaction. Some of us also react to oats the same way. So it is wise to eliminate oats also for a while in case you are one of those that react to them. Many "gluten-free" foods do contain oats, but if you are an oat reactor you aren't really eating gluten-free if you consume those products.
  4. Thanks Karen. I like the videos by Tricia Thompson that are linked in the comments on the article. She explains some issues about the testing process and correctly preparing samples for testing. Very informative. If they come out with a sensor that detects wheat, rye, barley, oats, peppers, tomatoes, potatoes, eggplant, soy, celery, and dairy I might even consider trying it.
  5. Hi Jherm, Has the doctor tested your thyroid levels? Hashimoto's Thyroiditis is an autoimmune condition that is more frequent in people with celiac disease. Hashi's attacks the thyroid and damages it via an autoimmune attack. There is a blood test that can be done to identify TPO antibodies that are present in Hashimoto's. The attack on the thyroid can cause swelling in the throat and pain, and at some point low thyroid levels. Although it is possible to have both high and low thyroid hormone levels at different times with Hashimoto's. It might be something to consider having tested.
  6. 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.
  7. 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.
  8. 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.
  9. 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.
  10. 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&
  11. 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.
  12. 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.
  13. 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.
  14. 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!