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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.

Newcomer In Michigan, Diagnosed Today

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Ahorsesoul    53


Welcome to the gluten free world. You will find out how good you can feel. It will take some work and you might go into a withdrawal phase from gluten. Take it as it comes.

Since you've been ill for so long you will welcome the relief from eating gluten free. Slowly go over everything that comes into contact with you. You sound like you may be very sensitive to gluten. Start checking personal care products, replace the obvious gluten items and then learn the un-obvious products (medications, vitamins, soda, beer, blue cheese, soy sauce, spices......).

You will also learn about cross contamination. French fries cooked in oil that has cooked breaded fish will knock you for a set back. Plastic and wooden kitchen utensils/cutting boards, along with coated pans may need to be replaced. A toaster used for poisoned bread should not be used for your bread.

Many people find they need to give up dairy (and sometimes soy) for a few months for their intestines to heal. You will be frustrated and confused at times. It's ok. It will get better.

Remember it is not all in your head!! You now know what has caused the problems in your life. (ok, maybe not all of them!)

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seven    0

Thanks for the words of encouragement! It has been a bit overwhelming trying to wrap my head around all of this... it seems like gluten is everywhere! I even found it in my shampoo.

You brought up some interesting points that I had not considered. I would have never thought to replace wooden spoons or to get a new toaster. Looks like I have some shopping to do.

While I think I'm starting to understand the scope of change that this will require, my biggest concern is accidental contact or ingestion because of how much I eat out. Not just at restaurants, but visiting with parents, or my girlfriend's parents... I would never expect people to change their eating habits for me so I'm trying to figure this out how this will work...

Anyway, thanks again for your insight! Can't wait to go gluten-free and finally start feeling better!


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Hi Andrew,

You've definitely come to the right place! The positives that you have on your bloodwork would be enough for most docs to conclude that you have Celiac Disease. The endoscopy is the gold standard for diagnosis, and you're a positive there too. Welcome to your new gluten-free existence! I've been gluten-free since October of 2009 and within 24 hours many of my symptoms were gone....like yours, my stomach gurgled after meals, along with gas and bloating and (thankfully only occasional) diarrhea. I had no idea how ill I had been feeling until I felt well. I had no idea how 'at peace' my gut could be. I had no idea how fatigued I was. So despite the fact that my test results are negative for celiac disease, I will remain gluten-free. Yes, THAT's how good I feel. I hope you'll feel well soon too!

If you're just starting out at this, I'd recommend you start small...pick up some gluten-free staples at your local grocery store like bread, cereal, crackers, granola bars etc. to accompany the foods you already have on hand that you know are safe - fruits, vegetables, meats, etc. These staples will hold you over so you don't starve while you figure out what you currently love to eat that will need to be altered to be gluten-free, and what you can learn to live without completely. Eating out can be very tricky, but most restaurants are aware of what Celiac Disease is and can help you figure out what they serve that's safe for you. As for sharing meals with family and friends, it's all about education, for you and for them. I hate being a high-maintenance diner, who can't eat x & y & z. But you'll probably find that lots of homecooking is already gluten-free, and only a couple of modification are necessary. There are few things safer than meat and potatoes as long as you're careful about sauces. I gave up gluten just before Canadian Thanksgiving; I skipped the stuffing, brought my own gravy and was good to go, especially since my mom baked me my own crust-free pumpkin "pie". Like most of us, you'll get tripped up from time to time on things that seem unlikely to have gluten in them (so far my biggest surprise - Twizzlers. Seriously?) but you'll figure it out and it'll be worth the effort because of how much better you'll feel.

Welcome to the fold and happy (gluten-free) eating!



gluten-free since October 6, 2009

New Brunswick, Canada

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mushroom    1,205

Just a word of warning about cross-contamination, Andrew. If the previous poster's stuffing had been cooked in the bird, the turkey would be contaminated and unsafe for you to eat. This is the kind of way your family can help accommodate you--by cooking the stuffing separately, and not using any gluten-containing bouillon to baste with, for example, would render the turkey safe. It's going to be a learning curve for you and your family, but it's easy for them to help you if they are willing. Having the official diagnosis will help you as some families are disbelieving that you have to be so strict about all gluten, the "just a little bit won't hurt you" brigade. Well, just a little bit will hurt you, especially after you have done some healing.

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    • well, we're in sort of similar positions but can l ask what made you go gluten-free 3 years ago?   You've kept the diet for quite some time so where the health problems serious? at the time was seeking testing not an option? For myself, l absolutely tried everything to gain weight after losing January 2017. By April/May l started wondering how on earth l could be eating : regular meals, Boost shakes, fast food and sodas and candy all day, pretty much daily and still be losing. Some of these meals at home were pasta packed which, at the time l really thought goulash and cans of chef Boyardeee would help me gain     And years of headaches, brain fog that l didnt know what to attribute to but never suspected celiac until the weight loss, and legs and feet that hurt constantly (l didnt really know this could be due to gluten but it relived after being gluten free).   l am only about 2 months in, l did take a really basic TTG ia test after getting a response that my GI would test ''at some point'' and not being clear when that was, and very tired of being 97 pounds and scared of losing more!   so l now also have to wait to be tested more extensively, but l have gained some weight  and gave noticed some changes.    Did you have any improvements after going gluten free? If the test l did take had just been a clear ''no'', l dont  know how motivated l would have been to do this. It wasn't a clear yes, either, but designed like a drug or pregnancy test so the weak red line  does signify at least some sensitivity.   Typically the longer you wait, if in fact you are sensitive or even have celiac disease, the harder the challenge may be so l can understand the anxiety. l am planning for about 6 months. l could not handle going back on a gluten containing diet with my current job as well, and especially not during holiday retail season!   l would start very slowly. Is your new job going to be stressful? You might want to get a feel for the environment first and how you're going to deal with it on days when you might be feeling like utter crap >.> A headache that feels like a band around the back of my head and eye pressure was something l dealt with on my bad days before being gluten-free. It's not easy to function and when l did, l wasnt a nice person or very efficient.   You can start slowly, and please font be too concerned about fitting all of your challenge into six weeks, IMO. l wouldnt think of it as just a short term binge. Yes, you want to get it over with, but if you really fall apart and dont think you can even consume gluten daily, maybe try to do what you are able to do and if the time period gets stretched to 8 weeks or maybe more don't panic.   it should be difficult at first and even a shock to your system, but  even though you will likely not feel well the entire time you're challenging to retest, maybe by a few weeks in the symptoms will be slightly less severe and you can find ways to ease them. Any meds that you have taken like nsaids, a steroid, even Flonase helped me but l really dislike the side effects.   If the process in general with doctors and asking about this also gives you anxiety l would really recommend the walkinlabs recommended here. After 6-8 weeks, order (around 300 so plan for it financially). That will be your answer, make sure you have truly waited enough time to be properly tested and order the most extensive tests.    It's not something you want to have to repeat but l know l am not looking forward to it either! You will have your answer though, which, even if negative will be satisfying.
    • I can not add anything else, but I hope you feel better fast!    
    • Welcome!  I am so sorry that you are dealing with this.  With all your testing was active celiac disease ruled out?  Did they check for UC or Crohn's?  Flies?  I am on the West Coast.  The wind is usually too steady for any insect to hang around at the beach, but I recall getting attacked by them while visiting Mt.  Vernon.   Thank you for taking the time to share with us.  I am sure you can help someone else with PG.  You might enjoy hanging around with a group of people who have celiac disease like you!  😊 I wish you well!  
    • Peppermint tea can help with a gassy stomach.  Some people take activated charcoal tablets.  There's also aspirin and wine to consider.  Pepto can help (it has aspirin in it), and may soothe the the gut irritation.  But it is not a long lasting affect, take it every couple hours.  
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