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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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  2. JMG got it down pretty much, the painful and gluten effects from eating it should clear up in a month, damage symptoms you might notice some differences as early as 2-4months but most do not noticed major improvements til about 6 months to a year. I have been gluten-free for over 3 years all my villi have healed according to the doctor on my last scope. It is very important to not cheat and avoid any kind of CC as it can set you back weeks or months. I would suggest a whole foods only diet for the first month or two, no dairy, simple stews, soups, etc. make for easy to digest and simple meals. Check out the 101 thread for some good information. PS a new combo crockpot, steamer, rice cooker combo and liners for a crock pot will be a life saver for making simple meals and easy clean ups. Quick cook microwave ware will also be handy making sure you have gluten-free cooked meals if you can not get new cookware immediately. I normally suggest cleaning out the entire house, scrubbing down knobs, handles, on the drawers, sink, fridge, cubbards etc. throw out condiment jars, checking ingredients on everything in the house including your hygiene and makeup. Putting in drawer organizers for new utensils, throwing out scratched glass, teflon, plastic, and steel cookware. Throwing out any Tupperware, and cutting boards, some utensils that can not be cleaned well. Some times you can save cast iron and stainless steel cook ware if you can run it in your ovens cleaning cycle over 600F. Gluten is a protein like blood if you can not clean a item where a CSI team will not find it give it up, it is not a germ that can be killed with disinfectant. I use freezer paper for clean prep surfaces, also makes clean up a breeze, I tend to use gloves alot also when fixing foods,
  3. Today
  4. Hi Allie and welcome First off, I know 3 years was a long wait, but at 17 you've figured out celiac way before many people do. That should make a big impact on minimising its effects and helping you with the diet, so, bizarrely enough, congratulations! A lot of good advice has been brought together in this thread: Don't worry that your symptoms are bad now. As you follow the diet your body will begin healing itself and you're still very young so hopefully this will go really smoothly. Think in terms of the next 6 months rather than weeks however, recovery will likely take a little time. Eat as healthily as you can, lots of whole foods and try to avoid the gluten free processed substitutes as your digestive system needs all the help it can get at this moment. You may want to avoid dairy as well for now and think about reintroducing it later. This site has been really helpful to me and others. I hope you find it just as useful. Best of luck! ps, your increased reaction to gluten during the challenge phase was perfectly normal. Many find that reintroducing it much worse than the initial affects and take some time to get over the challenge. That's why you'll see lots of posts here urging folks to 'stay on gluten' till their testing is complete!
  5. Hi! My daughter is 19 was diagnosed at age 16. It took about 12-18 month s for her to fully heal from the damage and feel "normal" again. Also because of the damage done she had reactions to dairy, so you may want to try no or minimum dairy until youre fully healed. Just a suggestion. Hope you start feeling well soon!
  6. Hi yall! New to this blog, but really glad it exists because I have lots of questions. First off, I'm Allie! I'm 17 and newly diagnosed Celiac after about 3 years of searching for answers. I initially went gluten-free on the recommendation of a friend, I felt better in about a month and then my pediatric gastroenterologist had me do the gluten challenge, and my symptoms were the worst they have ever been, and ones I barely noticed before became very present. I did the biopsy and was diagnosed, it's been about 2 weeks and my symptoms are still pretty bad, although my diet has no known sources of gluten or cross contamination. Wondering if anyone has any input on healing post gluten challenge, any tips or how long it took for you would be quite helpful! Thanks
  7. Might want to look into a keto diet, I have UC on top of celiacs and keto is working great Yeah I have major nerve and brain issues with gluten, gluten ataxia with nerve issues and brain issues. Seems to cause my body to attack my brain and nerve system. My brain stumbles fogs, and starts looping, the confusion causes me to become really irritable, I call it going Mr Hyde. Like my mind will start looping constantly on thoughts and not move driving me literally mad, or it used to. Now days it is primary the numbness anger but the gut issues and sometimes random motor loss limit me motionless to the floor now days for the duration of the major anger effects. Used to be a lot more mental then painful gut. I did a mental trauma post on it on while back where I came out about all my mental issues with gluten.
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  9. ^^^^^^ good info, tips and tricks^^^^^^^^^ yes, crumbs will make you sick. also, breathing flour/pancake mix, etc that is in the air because eventually, you're going to swallow some.
  10. Hello I was diagnosed Dec 15 of last year and went totally gluten-free the next day. I actually got worse before I got better - it's a steep learning curve - but now, 4 1/2 months later I'm finally seeing improvement. Hang in there.
  11. Called my GI doctor today to make sure he is going to look at my small intestine and do biopsy for Celiac for my EGD and he is. Thanks for the tip everyone about have to start eating gluten again. The office told me to break my gluten free diet and start eating gluten everyday until my EGD. Here's to being miserable again for a few weeks 🍻🍞😩
  12. I can completely relate! The horrible mental effects that I have been living with for years is the absolute worst side effect of eating gluten, HANDS DOWN. Worse than the endless tummy aches, worse than the constant diarrhea, worse than the week long migraines, worse than the daily fatigue and body pain.... I honestly though there was something seriously wrong with me and hated my life because of how I felt mentally. I always felt like I was drowning, not in control of my thoughts, trapped in some unexplained misery. My head was always so cloudy, and I was mad because I always felt so slow and stupid. I would feel so lethargic and sad and empty while at the same time be raging inside, wanting to rip out of my own skin. I was mean, terrible, would snap at the people closest to me for no good reason and just felt like I hated everyone and everything. Think of how crappy you feel when you have a terrible cold and flu - I felt that crappy, but mentally. Some days were really bad, some were mild. I always thought it was because I was getting a migraine, or because I had a migraine, or because I had just overcome a migraine, because I didn't sleep well, because....always a random reason to justify why we have all these weird unrelated symptoms before we get diagnosed. I'm happy to say that I have been gluten-free for about 2 months now and though I am not symptom free, the first thing that improved was my mood. I no longer feel foggy and miserable. For the first time in years, my head is clear, I can actually think, and I feel positive and like I am in control of what's going on in my head. I don't hate the world. I don't spend every day bawled up on the corner of the couch depressed and angry. The release of these horrible symptoms is enough to never make me want to cheat, no matter what I have to miss out on. So insane how a little minuscule amount of a stupid protein can wreck such havoc.
  13. I wanted to collect some of the info on NCGI in one place so that visitors who test negative but may still have an issue with gluten can be directed there. I'll add to this post as I find new links, but feel free to add or contribute anything you think may be of use! Matt --- Useful links: An overview from Alessio Fasano, one of the world's leading researchers on celiac and gluten sensitivity: https://www.youtube.com/watch?v=VvfTV57iPUY Umberto Volta, another leading researcher in the field gives some of the latest findings about NCGI: Presentation slides from Dr Volta's visit to Coeliac UK - NCGS about halfway through A scholarly overview from celiac disease magazine: https://www.researchgate.net/profile/Knut_Lundin/publication/232528784_Non-celiac_Gluten_Sensitivity/links/09e415098bbe37c05b000000.pdf A good overview from a sceptical but fair perspective: https://sciencebasedmedicine.org/a-balanced-look-at-gluten-sensitivity/ Another overview: https://celiac.org/celiac-disease/understanding-celiac-disease-2/non-celiac-gluten-sensitivity-2/ University of Chicago's excellent celiac site's take: http://www.cureceliacdisease.org/category/faq-non-celiac-gluten-sensitivity/ A compelling account in the British Medical Journal from an NCGI patient: http://www.bmj.com/content/345/bmj.e7982 Here's some positive news about a potential new test: http://www.medicaldaily.com/non-celiac-gluten-insensitivity-blood-test-392850 NCGI in children: NCGI and auto immune study: https://www.ncbi.nlm.nih.gov/pubmed/26026392 Also consider: Fodmaps: http://www.kcl.ac.uk/lsm/research/divisions/dns/projects/fodmaps/faq.aspx This Monash study: http://fodmapmonash.blogspot.co.uk/2015/03/the-truth-behind-non-celiac-gluten.html suggested some who think they're reacting to gluten should actually be reducing fodmaps Sibo: http://www.webmd.boots.com/digestive-disorders/small-intestinal-bacteria-sibo
  14. I was just diagnosed in March and I totally feel you. I'm having a hard enough time with determining which lip glosses are safe, let alone all my face products etc. I feel like this 'grey area' is the biggest annoyance with Celiac. So many foods/cosmetics I thought were safe after reading the ingredient list are actually not safe at all! One website says it's safe, one says its not. All these unfamiliar ingredients and even after googling term after term still so many grey areas!! I'm sure in time it gets easier and second nature and you learn by trial and error but holy this constant uncertainty is super annoying haha.
  15. This place is great. Learning a lot. Honestly, I've known people with celiacs in the past, but it never occurred to me that that's what could be wrong with me. But the more I learn, the more it fits. One more thought, the articles I'm reading seem to say that we need to avoid gluten meticulously. I'm certain that I didn't accidentally eat gluten, because I've basically only eaten meat and veggies. But, my family has continued eating as normal. My kids making pancakes and it getting in the air, toast with all the crumbs everywhere, etc. Could that exposure be enough to keep my blood antibodies high? Or does it need to be ingested?
  16. Hey, I had Hashi's some 15 years prior to my celiac disease diagnosis. My doc put me on a very lose dose of Armour. It did bring down my antibodies (by half), but they were extremely high to begin with (anything over 30 was positive and mine initially were close to 4,000). My nodules and enlargement stayed constant. Both actually went away since I have been gluten free! Like Gemini, I am on Armour for life! But that's okay. Just had my TPO checked yesterday, in fact, and now the number is 360. So, better, but that lab range is anything over 15 is positive. No reappearance of the nodules or enlargement. I am also on a low carb high fat diet to treat my diabetes too.
  17. Yes! Call University of Chicago! Switching you from one medication that's not working to another and back again isn't helping you. It's definitely time to look at something else. I'm so sorry that you're not feeling better.
  18. The global market for new drugs to treat celiac disease is set to surge strongly by 2021, according to the latest market report from Persistence Market Research. The company's Celiac Drugs Market report offers in-depth analysis of overall market trends, macro-economic indicators, and governing factors, along with the projected strength of individual market segments. The report also offers geographical breakdowns of the various market factors and the specific market segments they influence. View the full article
  19. Thanks all. I took you advice and I just went for a walk instead of doing intense cardio. I'm feeling quite a bit better today but since it's friday I'm gonna rest it up also
  20. I've posted about this before, but I'm about 14 weeks in and have seen very little improvement. Did any of you take a long time to feel better, and do you think I should cast my doubts aside?
  21. Here is a link to a good explanation below. Some people go a bit overboard with the " what ifs". Even , on the rare occasion the stuff is made from wheat oil, and it has a stray molecule of protein.... then it is .05% ( maybe less?) of a whole 4 oz bottle of lotion- even if you drank the whole bottle- it isn't enough to gluten you. http://www.glutenfreedietitian.com/vitamin-e-from-wheat-germ-oil/ the author of of this article is well respected in the Celiac medical/ research community and has spoken at International Celiac Research symposiums
  22. http://www.gluten-free-glutenfree.com/nepal-traveling-as-a-celiac
  23. I was in the hospital once for six days and had nothing except the glucose in the iv solution- and I survived. Since it is only for two weeks I wouldn't worry about a balanced diet, or getting every nutrient every day. Some celiacs react to oats, but lots of steamed rice would be good for getting calories. If you took nuts that would add both fat and protein in a relatively small space per calorie. Then just add a gluten free multivitamin/mineral. Sounds like a great trip - hope you have a good and healthy time.
  24. If you can get plain rice, go for it. Plain fish, meat, too. Maybe beef jerky and protein bars ? I wouldn't bother with the Nima- it is giving a lot of false positives
  25. They are very highly refined and should not contain gluten. If you aren't ingesting it, it is safe. You could roll in wheat flour - if you could keep it out of your mouth. i stay away from stuff with obvious wheat -usually wheat germ oil. But I know Celiacs that very carefully use hair products with wheat germ oil for thier curly hair. I just tend to get shampoo in my mouth .
  26. That's a very normal reaction believe it or not. I would always tell someone to stay on gluten before testing is done because it's a lot easier staying on it than it is reintroducing it. I felt worse on my challenge than I had before giving it up the first time. Whilst a definite diagnosis is the aim of many (I tried myself) and has benefits in terms of health monitoring etc there is no treatment other than the gluten-free diet so if you get negative or inconclusive results and can't face the further challenge you could choose to forgo it and just go gluten free. Either way there will be plenty of support for you here. all the best.
  27. Thank you so much. 8-12 weeks! Oh my goodness, I don't think I can do that. I think going gluten-free made my body's defenses go down or something. I felt bad before, but reintroducing it was completely awful! I still feel queezy a few days later. Let's pray it just comes back positive. lol
  28. Thanks for the feedback! Gemini you're very right - surgery was a totally weird recommendation. My current doctor treated me without hormones because my TSH levels are normal. The doctor found that my Vitamin D levels were severely low and put me on a high dose. They climbed just out of the deficient range. I am very active and frequently outdoors, and they still only climb out of deficient If i'm on intensive VIitamin D supplementation. - In addition, She also suggested I a modified lower carb diet (I'm at a healthy weight, there was no reduction in calories, just an increase in protein and fat and a reduction in carbs, a low reduction, slightly above the recommendations for a diabetic), which the doctor recommended for PCOS. Both of these coincided correlated with a slight reduction in the anti-thyroid antibodies and a slight reduction in nodule size. My TSH levels have remained stable, so it was incorrect to say function, really just a reduction in the level of attack (but the thyroid levels are still high). The doctor that recommended surgery did so because "you're about to start college and you won't have time for monitoring, it will eventually fail. If we remove it now, you can just go on Synthroid and you'll never have to deal with the levels being out of whack." Yeah.... I was 18 then.... I'm now 27, but my Mom just went "NOPE!" and got a second opinion. This person was fine, but all he did was monitor to make sure the TSH levels stayed ok. They did, I just have a goiter and several nodules. The most recent endo. I've seen, who put me on intensive Vitamin D therapy and worked with me on the diet, felt like she was thorough (again minus completely dismissing the first celiac results. I think the D supplementation and diet were associated with a decrease (but obviously didn't and really couldn't reverse the outcome of the disease) in antibodies and nodule size because my TSH levels have yet to get out of whack. I also wonder if with fewer carbs, I ate less (thought still too much If I'm celiac) gluten, and that could have been more a factor in the correlation. Gemini- I'm glad that you have found a good treatment that keeps your levels where they need to be! I also really appreciate the welcome. Update: I have a referral to a GI specialist! I don't want to have Celiac... I love to travel, and I'm very social. I live in the US but my family is from Uruguay, South America, so I carry this Latin Cultural thing about loving to share food and seeing it as such a huge part of hospitality and community. I know that food in social settings gets hard to navigate...But I feel a sense of relief to think that I might have an answer to other health questions and that there is a way that I can stop or at least slow damage.
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