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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.


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TexasJen last won the day on July 11

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  1. I had my endoscopy first - I was anemic and having Restless leg syndrome and palpitations. The doc came out and said "You've got this scalloping of the intestines that we sometimes see in celiac. I took biopsies. I'll order some blood tests" My antibodies were off the charts high. I had no GI symptoms. Pathologically, celiac is divided into 3 stages: Grade A/Type 1: increased intraepithelial lymphocytes but no villous atrophy Grade B1/Type 2: villi still present but shortened Grade B2/Type 3: complete villous atrophy Most people that have untreated, symptomatic celiac have some degree of villous atrophy/blunting. But your biopsy still could be celiac. But, I agree with ironictruth. If the labs are positive and you get better with a gluten free diet, I think you have your answer. When I had a repeat endoscopy 15 months later, I still had IELs on the biopsy (but no villous atrophy) which apparently can take several years to heal. So I have no idea or I'm getting a little cross contamination or this is normal healing. Or it could be from the NSAIDs I take for my aches and pains......Frustrating to say the least. Let us know what the labs say....
  2. I agree with the Betty Crocker Brownie mix. You can barely tell the difference. It is available in a lot of grocery stores which is nice. Immaculate cookies makes pre-made dough that you buy in the refrigerator section of stores. They are really good (although I have only made 2-3 of the cookies because I usually just eat the dough raw. ) They do make gluten containing cookie mixes too so make sure to get the ones labeled gluten free - it's pretty obvious on the package. I read recently that the King Arthur yellow cake mix is quite good. I'm just waiting for an excuse to make a cake now. Make sure to buy yourself a mixing bowl, large spoon and your own cake pan. Don't use your roommates. Those pans never really get all the crumbs out of the corners and probably hold on to a bit of gluten. For cookies, make sure to keep a roll of aluminum foil and you can just cook the cookies on that.
  3. This is from Stanford Medical school on the criteria for diagnosing celiac. The Modified Marsh Classification of histologic findings has been used to grade celiac disease Simplified systems (Corazza, Roberts, Ensari) may be more reproducible Grade A/Type 1: increased intraepithelial lymphocytes but no villous atrophy Grade B1/Type 2: villi still present but shortened Grade B2/Type 3: complete villous atrophy Anyway, you can see from this, that she could still be categorized as Marsh Stage 1. I've read that people with longstanding symptoms usually have some degree of villous blunting. Maybe if her symptoms were really triggered by being ill recently and she was sick for so short of a time, that could explain the lack of villous changes?
  4. I'm curious if you contacted the company on this one? I always assumed that if it was certified gluten-free then it was probably OK..... If they are certified, isn't an outside agency coming in and doing the testing?
  5. Actually, I learned recently that there is a website that teaches people how to do it on their own at home. I was so de-cust-ed! I can't even imagine doing something that we know so little about (and is sort of gross) on your own. But I am very curious about this and hope there is some research on it in the future. Oh how I would love to eat a real hamburger again! Thanks!
  6. Hi- I have pondered those recommendations as well and here are my thoughts. Yes, your cast iron skillet, the little crevices in wooden spoons and plastics knife handles all have traces of gluten currently. However, that is a finite quantity right now. As you cook and use these items with gluten free foods, the little traces that are there will cook into the food and eventually if you stop adding more into the crevices (i.e. cooking with gluten/flour), there will not be any more there! Therefore, you do not need to throw these items away. Clean them well now and stop using gluten in the house and you will be fine. It is difficult to clean the crevices of a cast iron skillet though. SO, clean it well once and re-season it. Then cook with it several times. Don't let your daughter eat that food - it will probably still contain a bit of gluten (but trace amounts). After 2-3 uses, there will be no measurable gluten in the food. Biochemically, gluten can only be destroyed at 900 degrees F or higher. Bleach and soap will not destroy it just remove it. So there is no way to "kill" it, you have to clean things well to get rid of it. Even the self-cleaning oven cycle does not get that hot in most residential ovens, so using that will not really help. Just scrubbing and soap and water! I have a biochemistry degree and it is consistent with the teaching at the UCLA Celiac center (I ran this by them to make sure they agreed!) As for dish towels, I just wash them often. I didn't buy all new ones. And I do use paper towels to clean the small part of the kitchen where I allow gluten in (to make the kids sandwiches for school)
  7. Newly diagnosed

    I wasn't sick either and was diagnosed at 42. I have 2 kids. It is overwhelming at the beginning but it is doable. Every family is different so you have to find a system that works for you. Start with yourself and focus on eating whole foods at the beginning. Don't go out and buy a ton of gluten free crackers, cookies cakes etc. Eat meats, veggies and fruits. I love dairy so I ate gluten-free ice cream to get my sweet "fix" and yogurt. Avoid eating out in restaurants at the beginning. That is the most challenging part (along with traveling) so just abstain at the beginning because there is a high chance of cross contamination there (unless you have a gluten free restaurant nearby). You'll eventually find a couple of restaurants that you vet and can feel safe eating at. Buy a new toaster, colander that will remain gluten free. Clean your pots and pans really well. Cook only gluten free food in them (or if your kids cook, buy separate pots for the gluten free food) What I did was make our dinners all gluten free for the most part. For breakfast and lunch, we usually don't sit down to a formal prepared meal - we might all do something different, so I do my own thing. Some people choose to have a "shared" kitchen and some people make their entire house gluten free. I chose to have a shared kitchen since no one else in my house has celiac. We have a certain cabinet that has all the gluten containing foods - bread, cereal, granola, English muffins etc. There is a nearby counter that we use for preparing those foods. We don't really cook any gluten containing foods except in the toaster or in closed containers in the microwave. Label your foods in the fridge that you don't want the kids to use with a special sticker (i.e. jelly, butter, etc) After every meal, I wipe down the kitchen table and countertops with paper towels to remove any leftover crumbs. Having a shared kitchen is very difficult and nerve wracking at times. It is tough to avoid cross contamination without rules and careful attention. Your teens may not be up for the task. You'll have to gauge that on your own. They get plenty of gluten out of the house and you can always take them out to a restaurant to get a burger, sandwich with real bread, or pizza. Every Saturday is Pancake day in our house and we always make them gluten free. Good luck! We are here to help!
  8. I saw this post today and thought of this thread.... https://celiac.org/live-gluten-free/resources/7-day-pediatric-gluten-free-meal-plan/ or this one http://mygluten-freekitchen.com/three-gluten-free-top-8-free-school-lunches/
  9. I think the heart scan will be very telling. A lot of it (lung fluid, swollen feet) could be his heart but I agree with the other posters that it sounds like he is malnourished too. What was his diet like before he got sick? Does he have any dementia or Parkinson's? Was he an active healthy guy up until a year or two ago? Does he stick to a gluten free diet?
  10. Cooking in other people's kitchens

    I agree with cyclinglady. I don't have the same plan for every place we visit. Every place presents it's own challenges, so I spend a lot of time planning meals everywhere we go. My mom is not really a cook and when she does cook, it's rarely with flour. So I use her pots and pans and clean them well. I buy my own sponge, dish towel, cutting board there. Use butcher paper on the counter and a lot of paper towels to wipe off the counters. My in-laws live in the mid-west. I'm pretty sure everything there is made with flour. My sister in law uses her wood block kitchen table to roll out her pie crusts. So, the whole thing is literally covered in flour. I barely eat in her house when I am there. When she's baking, I go outside. I eat frozen meals, beans and rice out of a can, Chex cereal out of paper bowls, and a lot of bananas. I did travel to the East this summer and thought of one easy thing (it may not be practical for every trip though). DC had a completely gluten-free restaurant and it would have been so nice to have our hotel on that block. Then it would be convenient for me to just walk down the block for one hot meal a day. The rest of the family could still go out to a variety of food. I wouldn't have to eat out of a can for the whole trip! I do have a plastic travel box for car trips. It has paper bowls/plates, paper, towels, a set of silver ware, a paring knife, spatula, spices, single use packets of mayo and mustard, cutting board, can opener, measuring cups and a skillet. I take it with me camping, hoteling, to cabins. Then I buy some food depending on my needs/type of trip we are taking. Traveling and socializing is definitely the hardest thing about having celiac. Remember that life is about the relationships we have and not as much about what we eat - it is very important to keep reminding your kids.
  11. Yay! My kids are negative too. I am going to have them screened every 2 years while they are still growing. I don't want to wait until they are not growing to diagnose it. (By then, they probably would have had it for 2-3 years, esp since 50% don't have typical symptoms). Of course, if they develop symptoms, I'll have them retested sooner. I think the current guidelines say screen first degree relatives every 2-3 years or if symptoms develop. However, I was only diagnosed last year, and there were no guidelines at that time. My pedi called a very well respected pedi GI and he made his "best guess" at the time. I think the recommendations on screening relative will be changing over the next 5-10 years
  12. Hi Luana- I'm sorry to hear that you are feeling poorly. It seems as though, due to the severe pain after eating, your GI doc would have recommended an upper scope as well (looking for an ulcer, gastritis, or some other disease.) It could also find seronegative celiac (meaning celiac disease that you can see under the microscope with a biopsy but the antibody blood tests are negative). Did you have that? Did he/she do biopsies? If not you might want to consider talking to the GI doc and seeing if they think it's reasonable. If thats negative, you could still have Non-celiac gluten sensitivity ( NCGS). This is a disease where people have similar symptoms to celiac - stomach pain, bloating, changes in bowels - that gets better when they avoid gluten but all the tests are negative. So, if you talk to the GI doc again, get the scope, it sounds like it would be worth going gluten free. (that's the treatment, BTW - gluten free diet and fairly strict too) Some people would choose to just go gluten free and not get the scope if they feel so much better avoiding gluten. FYI- Cheerios probably aren't really gluten free enough. Best to avoid all flavors of Cheerios. Try Chex cereals (except wheat). Avoid oats too for a while Also, it would probably be best next time to start your own post rather than adding on to a post that's 7 years old. You'll get more answers that way! Good luck!
  13. I'm fine in Austin. Lots of rain. A bit of wind..... Although for us, most of the more severe weather is coming overnight tonight. They are predicting 5-20 inches of rain here. If it's 20inches, probably we'll see flooding. If it's only 5 inches, yay for the extra rain. They are predicting 27-30 inches of rain in Houston. If you have ever been there, you know that Houston holds on to rain like a wet sponge. Flooding will be a huge problem there. South of us, 200,000 people have lost power. And they are predicting 30 inches of rain there too. I think the worst is yet to come to be honest for most people. This crazy storm is going to keep raining on us until Wednesday! Thanks for asking! Keep praying for those who stayed south and didn't evacuate.
  14. Well, the biopsy came back just plain old reflux/esophagitis. No EoE. This is reassuring in some ways for me. I didn't really want to give up ice cream! I hope that a gluten-free diet clears up your symptoms for you. For me, I guess it's just no evening snacking, less coffee, smaller meals. Good luck!
  15. I'm sorry you are feeling so badly! Muscle and joint aches can be caused by a lot of different things - including vitamin D deficiency. I think most people (doctors included) don't think of celiac as the most likely diagnosis when your complaints are muscle. My point is sometimes you can't do every test at the beginning. If you like your doctor, make sure to go back to him or her and say "I tried taking vitamins and that didn't help my symptoms. I still feel bad. I want to get to the bottom of my health issues because this isn't normal. What are some other diseases this could be? what other tests can we do? " Keep pressing them. My fourth grade teacher told me "there are no dumb questions!" Just keep asking until until you find the right answer. Sometimes you have to do several different tests etc Make sure to keep a record of all of your symptoms and get the testing for celiac like the other posters recommended above. Also, make a face to face appointment with the doctor for f/u appointments. Don't assume that a phone call is enough. A good doctor is only as good as his message taker and/or nurse. And, finally, if you don't think your doctor is listening or doesn't believe you, go see a different doctor who will keep trying to find the answer to your symptoms. Good luck!