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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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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
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CarolinaKip

Questions For You All? Leaky Gut?

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Hello everyone! I've been gluten-free, nut free, soy free and tomato free. I still have bloating in the evenings. Sometimes more than others. It seems I cannot eat raw veggies or anything raw, it is worse then. I love fresh veggies and fruit, but can only do berries. My bloat seems to come on at the same time of night with mild cramping. Am I totally crazy or does this sound familiar. Any ideas or suggestions welcomed!

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Two years in, I was in much the same place as you, minus a few more foods. It was suggested I still had a leaky gut and I dismissed the idea after all I had done and all the foods I had eliminated and all the supplements I had taken. Nevertheless, on expert advice, I went on a fairly involved supplementation program, the most important of which I believe was the probiotic VSL#3. Since that time I have not "lost" any more foods, can tolerate corn starch and potato starch (just keep me away from the lectins) and soy lecithin, which has simplified my life a lot. And funnily enough, since this past summer when I was on a nasogastric feeding tube being fed something my husband approved as safe for me (some kind of non-corn, non-gluten slurry :P ) my residual bloating and belching seems to have gone away :ph34r: Touching wood whilst keying that in. VSL#3 is expensive, but for me I believe it is what worked to finally heal me up.

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After 18 months on a strict gluten-free diet and still having problems, a doctor recommended that I put one scoop of Metagenics UltraClear Sustain Medical Food into my smoothie every day. After two weeks, I felt as though I'd never had celiac. Life was good...and my digestion was great.

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Rosetapper, what is in your product and where do we get it? Where do we get VSL #3 as well?

VSL#3 can be ordered online. Just google it.

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    • Celiac disease can be dormant for years til a strain/stress to the immune system makes it come out. Many of us have had this issues, your infection run in might have triggered the dormant genes for the disease if you had them. I would follow up with the testing, see about getting a full celiac blood panel if you can, you have to be eating gluten for 12 weeks daily prior to testing. http://www.cureceliacdisease.org/screening/

        If not celiac it could be another food intolerance/sensitivity I suggest keeping a food diary and tracking what you eat, seasonings, how it is cooked etc. And how you feel later. Change up our diet more and look for patterns.  Here is stuff to read up on. https://www.mindbodygreen.com/articles/are-food-sensitivities-for-life
    • Yeah , i will look into getting tested - like you say there is no harm in it . What I found very interesting is the part where you say "Later I got pains in the stomach, usually a dull ache although I could get a fierce stabbing pain there too. When I went gluten free those pains stopped. as did my chronic sciatic backache which Ive subsequently realised was probably due to inflamed tissues pressing on nerves." - I also started to get chronic sciatic nerve pain on the right side over a similar time period and am wondering if its the same kind of thing. If I could solve both those things it would be life changing for me
    • Hi ,  i was thinking that an intolerance and allergy were about the same thing really but sorry if im wrong. I know celiac is an autoimmune disease but was thinking that is different again, more serious and was erring on the side of my possible issue not being that but more of the intolerance type. Clearly im just guessing though and dont know about this stuff , hence the posting for advice, The problem with trying to get tested is that in bolivia there are very limited tests and doctors are unreliable so you have to rely on yourself to certain degree. I have heard of a test here and was planning on looking into that but it made sense to try to get some opinions and advice online first so Im in a better position to understand if any tests here are actually reliable enough. I dont think there is an issue with travel parasites etc as I have already taken the medications thats would kill them like a course of albendazol and praziquantel and that was after a 2 week anti parasite cleanse. That did feel like it got rid of anything and the only issue I have been left with is this pain as described.
    • Karen's point about parasites etc is a good one. They can cause a lot of symptoms similar to celiac /ncgs as you probably know.  At 11 I had my appendix removed following pain in the lower right side of my torso. On waking up the surgeon told me that it was actually ok, when I asked what caused the pain I think they said it was probably glandular - they didn't know. Later I got pains in the stomach, usually a dull ache although I could get a fierce stabbing pain there too. When I went gluten free those pains stopped. as did my chronic sciatic backache which Ive subsequently realised was probably due to inflammed tissues pressing on nerves. I would ask the Bolivian doctors if they can get any celiac blood testing done. The standard ttg may not be beyond their labs. can't hurt to ask? Give your diet my guess is you've had a lot of gluten for a long time. If its an issue for you expect a bumpy ride when removing it.  Best of luck!  
    • You can supplement if you want to.  IF you are low on iron or vitamin D - then some vitamins might be helpful.   The treatment for Celiac disease is a strict gluten free diet.  Some people need to cut out lactose for a few months, too.  The villi that are damaged in Celiac are the part that helps you digest lactose.  So, until they are healed, it might help to skip milk , cream, etc.     http://www.cureceliacdisease.org/faq/are-there-vitamins-created-specifically-for-nutrient-deficiencies-in-celiac-patients-2/  
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