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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.

Feeneyja

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  1. One of my daughters is milk intolerant. She had a history of mucus and phlegm and I didn't connect it right away. One day while drinking kefir she got a weird sensation in her throat and almost threw up. That happened twice. We cut milk and it has never happened again. The mucus is gone as well as an eye twitch/tick she developed. So, it may be the casein in milk.
  2. This paper from 2015 suggests the opposite is true: High Proportions of People With Nonceliac Wheat Sensitivity Have Autoimmune Disease or Antinuclear Antibodies. https://www.ncbi.nlm.nih.gov/m/pubmed/26026392/ Of course correlation does not equal causation, but it is compelling and something worth watching.
  3. I hhad been gluten free for several years for my daughter (who also is NCGS). It turns out that I am also gluten intolerant. I went on a gluten challenge for testing. Only lasted 1 month (supposed to be 3 months long). I did not test positive so am technically also NCGS. I haven't pursued genetic testing for either of us yet. But I can tell you that NCGS is no laughing matter. I do not buy that it is "only a sensitivity" and doesn't cause damage. It affected my nervous system, it felt like my teeth were going to fall out, I could barely stand up and function. The reality is that celiac testing is really good at picking up those with the intestinal damage. It is not good at diagnosing those who have already gone gluten free. It is not good at diagnosing those with neurological symptoms. There is no good definition of NCGS and no way to test for it. Strict gluten free is the only treatment. The same as celiac disease.
  4. These kinds of articles are a joke. The processed food diet is dangerous.
  5. Also, this site has some great ideas (paleo is inherently gluten free so that's a good place to look): http://nomnompaleo.com/post/59118514268/paleo-lunchbox-roundup
  6. My kids eat any of the following cold for lunches: Pepperoni Pizza Muffins: https://elanaspantry.com/pizza-muffins/ Left Over Pizza (using this Crust: https://www.americastestkitchen.com/recipes/7853-the-best-gluten-free-pizza Meat and Cheese role ups (just roll up lunch meat with a cheese slice) Hard Salami slices and cheese slices Hot Dog Bites: https://deliciouslyorganic.net/corn-dog-muffins-grain-free/ Hamburg Bites (really just little meatballs) Peanut Butter and Jelly Roll Ups using Grain Free Crepes :https://againstallgrain.com/2013/01/26/crepes-grainfree-paleo/ Left over Pancakes or Waffles (pack with cinnamon butter) and sausages Serve with any combination of the following: (make little baggies of these at the beginning of the week) sliced veggies (pack with guacamole or ranch dressing), chips (corn, veggie potato), fresh fruit, apple sauce, yogurt (you can freeze yogurt tubes and they will thaw partially by lunch), trail mix, brownie bites, mini chocolate chip cookies, mini granola cookies.
  7. Just want to chime in that I too was negative (8 week gluten challenge, I had bee gluten free for two years for my daughter who is also gluten intolerant) and it took at least a month to feel better. Some symptoms resolved quicker than others. The bloat was the first to go. But the dizziness and problems with eye focus took longest. The constipation and mucus took several weeks too. Also sores in my mouth took a while. Celiac or not, an immune system reaction to gluten takes time to recover from.
  8. Well, high GI foods are TERRIBLE for someone with SIBO. I know first hand. My daughter had a confirmed SIBO diagnosis. Anything with fermentable carbs (low GI foods, fiber, complex starches) made her blow up like a balloon. From a dietary standpoint, she needed to cut all starches and high fiber foods. Red potatoes and Jasmine rice were actually OK because they are high glycemic index. They hit the bloodstream before they reached the bacteria in the small intestines. The dietary approach to SIBO treatment is a low carb diet. No starches, no fiber. No grains at all. Limit nuts (they are high in fiber). It's no fun, but it works. So, if the problem you are having is SIBO related, you need to make some changes. Here's the diet for SIBO: http://www.siboinfo.com/diet.html You really should follow up with testing. Check your celiac antibodies. Have a SIBO breath test done. It could be SIBO. It may not be SIBO. Following the SIBO diet won't hurt you (and is an easy to digest diet so good for celiac healing anyway). Taking antibiotics if not necessary is no good.
  9. My daughter's doctor had to provide documentation as to why it was needed for two weeks (it's typically prescribed for three days for travelers diarrhea). Once the additional paperwork was put in, it was covered. Alternatively, you can use Flagyl. But some don't tolerate it as well. Or you can use herbal antibiotics (oregano oil, garlic extract, berberine worked for my daughter, alternating over 2 months or so). Also the supplement Atrantil is designed to work for SIBO. Plus adding a supplement to improve gut motility. Ultimately, you also need to cut the fermentable carbs so you are not feeding the bacteria. It can take months to get SIBO under control and it often requires long term diet changes. See http://www.siboinfo.com/ for lots of good information.
  10. My daughter's burping what terrible! We saw a pediatric GI at the University of Chicago. Insurance covered the breath test. We tried flagyl first but my daughter had a bad reaction to it and so the doctor ordered Xifaxin. She had to submit additional information to get it covered, but ultimately it was covered by insurance. But honestly, the SIBO returned several months later. I couldn't get an appointment with the same GI doctor because insurance changed who they would refer us to. It would take months to change insurance to get to see the doctor. So, I did a bunch of research and basically treated her myself. I really recommend finding a doc that tests for SIBO. I found that just the SCD was not enough. If it's SIBO (or candida overgrowth,) you need to reduce the fermentable carbs. There is a book and app called the Fast Tract Diet that worked the best for us. It allows you to calculate the fermentable carbs you are consuming. If you reduce them far enough, you start to have bacteria die off. That diet, with a combination of herbal antibiotics helped tremendously. The addition of Atrantil (developed specifically to treat SIBO) and Iberogast (to increase motility) has finally allowed her to start to increase her fermentable carbs. It took about 6 months to get there. By the time we were able to see her GI doc again, she was basically on the mend. I was told to increase her fermentable carbs slowly as tolerated, and if symptoms start to return, start her on another herbal antibiotic. We were also told that we could periodically put her on an herbal antibiotic for a week or so to keep the SIBO at bay. But the Atrantil she takes daily has really done the trick and so we haven't had to do another round of herbal antibiotics. But she still cannot have gluten. It clearly affects her gut and nervous system. I suspect that it slows transit down allowing for the conditions for bacteria overgrowth. Something else to note, when you start to have bacteria die off due to treatment, you feel worse. So sometimes people think the treatment is not working. It's usually within the first three days that the die off reaction starts and can last up to a week. It is difficult finding the right doctor. You might want to peruse the website http://www.siboinfo.com/ I know how you are feeling because I went through it with my own daughter.
  11. My daughter has had SIBO. The gas and belching and bloating were terrible. Probiotics DID NOT help. They made her worse. The standard antibiotics only temporarily helped. Diet change (SIBO Specific Diet - really reduced fermentable carbs), two months of different herbal antibiotics, daily Atrantil (a supliment created to help treat SIBO), daily Iberogast to increase motility...and now she seems to be clear of it. She is still gluten intolerant, but can eat other starchy or high fiber foods now. It took 7 months of the above treatment to clear the SIBO and her GI at University of Chicago said for a lot of folks it's a chronic thing you need to stay on top of. Was she tested for SIBO?
  12. Absolutely! I have a history of weight loss, headache, fatigue, bone breaks, various GI issues, dizziness, sores in mouth, hair loss. I went gluten free for my daughter, who was biopsy and blood work negative (so NCGS) and belatedly realized I had all of these problems resolve on the gluten-free diet. I underwent a gluten challenge and was super sick, tested negative myself (so that makes me NCGS also). It has been about a month since the challenge and some things are not quite resolved (the dizziness primarily, hair loss and mouth sores are slowly getting better). The reality is that you cannot tell the difference between celiac and NCGS by symptoms only. And they don't really know what NCGS is yet or how to test for it.
  13. I have Non Celiac Gluten Sensitivity (as does my daughter), and both of us have a history of migraines when glutened. I have had them my whole life until we went gluten free. I could never figure out my trigger. Now, if I am glutened, that is one of the early symptoms (first it is stomachache, then headache, then sores in mouth, then dizziness and fatigue...lasts several days with some symptoms hanging on longer than others). if you have just been diagnosed, you might want to give your gut some time to heal before trying chocolate again. Folks with intestinal damage often develop additional food sensitivities due to the damage done to the gut.
  14. My daughter did not test positive for celiac (6 week gluten challenge after being gluten free for 2 months). So she is technically NCGS. One of her worst symptoms is leg pain. It was a chronic problem when she was 7, to the point where she could no longer play soccer. At 8 we went gluten free because of GI issues and the leg pain went away. It came back with the gluten challenge and again went away when we went off gluten for good after testing. If she gets glutened, that is one of the tell-tale symptoms. She has had to use crutches because the pain is so bad. And when glutened, the pain usually lasts about 3 days.
  15. A lot of celiacs who don't feel well after adopting the gluten free diet test positive for SIBO (small intestine bacterial overgrowth). It can seem like you are having issues with all kinds of other foods. Namely, foods that are easily fermentable feed the bacteria in your small intestines that don't belong (they belong in your large intestines). Those with SIBO often have trouble with probiotics because you are adding bacteria to the wrong part of you digestive system. Your doctor can test for it by ordering a hydrogen breath test. Something to investigate as you try to regain your health. Here is a site with tons of resources: http://www.siboinfo.com/