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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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About amicamom

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  1. Hi! It has been a little over two years since we took our little baby off gluten. I just wanted to check back in and update this post. Everything is going great! She is doing well off of gluten. She is still "thin" but tall for her age and thriving!! Since then we have found out that two more family members have the same issues. I've written a couple of posts about our experience and tips on gluten-free cooking at my Gluten-Free Blog Best wishes to everyone dealing with celiac disease!! Here are some tips I've learned in feeding a family of 6 a gluten-free diet on $300 a month: 1. Plan meals and make a grocery list. 2. Do 90% of grocery shopping at Aldi (Wal-Mart if you don't have an Aldi). Aldi is cheap and very careful in their labeling of ingredients. They even have a website listing gluten-free foods and recipes here Aldi Gluten-Free Meals 3. Do not purchase a lot of gourmet gluten-free items that you find at places like Whole Foods (tempting as they may be). 4. Make a list of everything you currently eat that does not contain wheat (gluten). 5. Portion Food!! I find this to be extrememely important when staying on a budget. This means to take a box of gluten free cereal and divide it into as many "breakfasts" as you think before the kids get a hold of it and have three bowls for breakfast just because they can. When I use brown rice pasta to make spaghetti pie, I freeze half of it so it can be used for two meals. If you just set the entire pan on the table, everyone will finish it just because they can. I portion everything out as soon as I bring it home from the grocery store. My girls help with this. I purchased a bunch of tiny plastic containers from the dollar store and we portion everything from peanuts and raisins to little boxes with two slices of cheddar cheese and two pieces of pepperoni for a lunch snack. 6. Limit snacking. A designated mid-afternoon snack of an apple or a banana is fine, but just grazing through the cabinets every time someone is bored, IS NOT ALLOWED. 7. We drink water. Period. No sodas. No juice. No milk. God intended for us to drink water and our bodies NEED it. I give orange juice when we are fighting winter colds, otherwise it just makes the kids hyper. They need the entire orange,not just the juice. They have milk on their cereal but we don't just drink it by the glassful because I don't think it is very healthy and I can't afford to buy the healthier varieties. 8. Nurse your babies. 9. My girls attend a Christian school so they pack a lunch each day. I purchased them nice thermal insulated lunch bags (from a consignment store) and they pack their lunch for the next day each afternoon when they get home from school. I have given a list of typical foods in the blog post. Usually it includes some of the following: cheese and pepperoni, a fruit, carrots and ranch, peanuts and raisins, yogurt or applesauce, a peanut butter rice cake or a piece of ham or turkey by itself. It could also include leftover from dinner the night before. 10. Focus on eating foods that are "normal" that you can have instead of trying to make all kinds of exotic gluten-free things. Gluten-free bread and bakery items just don't taste very good. Bob's Red Mill mixes are the exception but they are expensive so they are used for special occasions. This means that we don't eat bread. There are many other foods that we can it so we try to focus on them. 11. For dinner, try to focus on making a meal that consists of a meat (canned salmon, chicken, ground turkey, ham, pork chops, etc) and add veggies (salad, veggies tray, roasted veggies, slaw, peas, etc), add starchy veggies (potatoes, corn, beans, etc) and then add something like applesauce or canned pears for something sweet and tasty. 12. Skip desserts. 13. Use cornbread. We purchase stoneground cornbread from a local mill for $5 for a 10 lb bag. We eat a lot of cornbread. I have a recipe that does not use wheat. We like it with butter and honey on it. It can also be used as a topping on casseroles such as Mexican Sheppard's Pie. 14. You can still make casseroles!! Use sour cream and Velveta cheese (or something similar) instead of using wheat thickened "cream of mushroom soup," cream of chicken soup," or white sauce. One meal that I make regularly is to purchase a whole chicken from Aldi (usually costs around $3.50). I put it in the crock pot and cook it until it is falling off the bones. I debone the chicken and add cooked brown rice, chopped broccoli, sour cream, and Velveeta cheese to make a delicious chicken, brocolli and rice casserole. I divide the "mixture" into two casserole dishes and I have TWO meals. We eat one that night and I freeze the other one. The entire meal costs less than $5. If you have boys and are worried about having enough - just add corn bread and roasted veggies!! We have a rule that you can not have seconds until you eat your veggies. I do a similar thing with spaghetti pie. 15. Corn tortillas with melted cheese on them are cheap and great for lunches or snacks. 16. Don't eat out. It costs too much and it is very difficult to find gluten-free food at the cheaper restaurants. 17. Basically you just have to change your mindset. Focus on all the wonderful things God created that we CAN eat. Instead of whining about how we can't have french toast or muffins for breakfast, fix a delicous breakfast of bacon and omelets or gluten-free blueberry pancakes.
  2. Bethany had her visit with the pediatric gastroenterologist yesterday. He was a great doctor and actually took the time to explain everything very careflully. He said he gives lectures on celiac to other doctors and he seemed to be very up-to-date on the information he gave me. I had done so much web research that I think I would have known if he was a joke or not. As expected, he can't do any more tests on her as she has been gluten-free for three weeks now. He says she is presenting as a CLASSIC CELIAC and that with the family history, he thinks she has it. However, he is going to work with us to find out for sure. He said the most important thing was to get some weight back on her so he sent me to their dietician and she spent over two hours going over the gluten-free diet with me. VERY HELPFUL!! I would recommend this for any newly diagnosed celiac. We are going to wait until she is two and then reintroduce gluten for a trial period and see what happens. In the mean time, they had me fax over my blood test results and they are going to look at them and see what the next step should be. I think it may be the gene testing. I am still on gluten so I may also have the biopsy if they think I should. We will just have to wait and see. Bethany is doing great. My daughter Charity seems to be getting more and more sensitive to gluten after being off of it for three weeks. She snuck a piece of grahm cracker at my Mom's house yesterday and was literally on the floor rolling back and forth crying that her stomach hurt. YIKES!! I told my husband this all or nothing thing with gluten is for real. I explained to her that we have to be really careful about eating gluten or she will get another tummy ache. She is only three but I think she understands.
  3. Yes, I've read the book "Dangerous Grains" and enjoyed it. My husband and I have decided to put our entire family on a gluten-free diet for now. However, I really want to know what is wrong with Bethany and WHY. No one ever figured out what I had as a child and we haven't been able to figure out what is wrong with Bethany or Charity. I would like to know and it is frustrating that no one can give us any answers.
  4. Celiac Disease Comprehensive Panel tests are back...I AM FLABBERGASTED TO SAY THE LEAST...Charity, Bethany and I all tested NEGATIVE for Celiac Disease. Bethany - TTG Antibody IGA <3 (negative is anything <5) Bethany - Gliadin Antibody (IGA <3 (negative is anything <11) Charity - TTG Angibody IGA <3 (negative is anything <5) Charity - Gliadin Antibody <3 (negative is anything <11) The lab did not perform the rest of the panel based on this information. Me - TTG Antibody, IGA <3 Me - Gliadin Antibody (IGA) 8 IGA, Serum 212 The lab did not perform the rest of the panel based on this information. I don't know what to think now. Of course, I am thankful we do not have celiac disease. However, I was certain this was the answer to my babies problems. What do I do now? Bethany is obviously thriving on a gluten free diet so I know there must be some kind of sensitivity. She is still scheduled to see a GI doctor next week. The above tests did not even show a SENSITIVITY to gluten, right? What should I do now? You can read more about my situation in "11 Month Old Starving To Death" in the parents of kids with celiac forum here at glutenfreeforum.com.
  5. Celiac Disease Comprehensive Panel tests are back...I AM FLABBERGASTED TO SAY THE LEAST...Charity, Bethany and I all tested NEGATIVE for Celiac Disease. Bethany - TTG Antibody IGA <3 (negative is anything <5) Bethany - Gliadin Antibody (IGA <3 (negative is anything <11) Charity - TTG Angibody IGA <3 (negative is anything <5) Charity - Gliadin Antibody <3 (negative is anything <11) The lab did not perform the rest of the panel based on this information. Me - TTG Antibody, IGA <3 Me - Gliadin Antibody (IGA) 8 IGA, Serum 212 The lab did not perform the rest of the panel based on this information. I don't know what to think now. Of course, I am thankful we do not have celiac disease. However, I was certain this was the answer to my babies problems. What do I do now? Bethany is obviously thriving on a gluten free diet so I know there must be some kind of sensitivity. She is still scheduled to see a GI doctor next week. The above tests did not even show a SENSITIVITY to gluten, right? What should I do now?
  6. Thank you all so much for your help! We took little Bethany in to be weighed this morning (they are monitoring it very carefully) and she had gone from 14 lbs last Thursday to 16.5 lbs this morning!! The nurse and I could hardly believe our eyes! She has followed a gluten-free diet since Sunday and her diarrhea has stopped completely and her appetite has picked up. She still has diaper rash but I think it is going to take a while for it to heal. I told her doctor that he would give me and two of my daughters the Complete Celiac Panel or we would find another doctor. They drew my blood this morning and we are awaiting the results. I have to take Charity and Bethany to the hospital to have theirs drawn because the doctor's office doesn't have small enough needles. Personally, I am 100% sure it is celiac. However, I have a husband and two sets of grandparents who want to know for sure. I am a little unsure of what to do. I have read online that the blood tests are not very accurate (especially in children under 5). Everyone is afraid of EnteroLab because it is expensive and is not a "doctor" in a "hospital." They are afraid it is some kind of quack method or something. I appreciate any and all experiences with testing if you would be so kind to share. Part of me is terrified my blood will come back negative and the girls will be negative and no one will believe me. They can't argue with the weight gain in Bethany and I am putting the girls on a gluten-free diet NO MATTER WHAT. I will be honest, I don't really want to go gluten-free. I did when I was a child from age 5 to 10 and I got so SICK of ricecakes and corn tortillas and not being able to have pizza or toast or mac and cheese. I dread giving up my bread and crackers. Thankfully, it looks like there are a lot more options with foods available now. They are building a Whole Foods Market in our town right now. We don't have a lot of money and I dread trying to find cost effective gluten-free foods. I know it is my job as a mother but I am just sharing my fears. Thanks for listening. This board has helped more than anything else! If anyone is interested, I have a Gluten-Free diet in PDF format from my sister-in-law who is a nurse and it seems more detailed and informative than most things I have found on the web. It is more "medical" but I found it helpful. I will be happy to email it to you if you send me an email. Rachel
  7. I am considering being tested for Celiac Disease using EnteroLab. Please share your experiences with this method. How useful was it? How accurate is it? Will insurance pay for it? Thanks!
  8. Thank you all so much for your support and advice! We have put Charity (our 3-year-old) and Bethany (our starving 11-month-old) on a gluten-free diet since Sunday. Bethany's diarrhea has stopped already! I am so excited. I am in the process of trying to be tested myself. I think Charity and I are going to get the blood test and depending on what they say, consider the small bowel biopsy. Would someone be so kind as to send me a link or tell me about Enthrolab? What are your favorite lists of mainstreem gluten-free foods. My Mom wants a list because she wants to start my 16-year-old sister on the diet but my sister is complaining that she won't be able to eat anything. Thank you again for replying to this topic and helping me! -Rachel
  9. Hi. This website has been a gift from God. I am excited and very thankful to find a place to ask questions about celiac disease in children. Please help me!! Let me start with a few questions... 1. Has anyone ever had a very young baby present with celiac disease? 2. Has anyone ever noticed a reaction to baby rice cereal or formula? 3. How do you go about being tested for celiac if you are an adult and having no symptoms? 4. What is the best type of doctor to go to? 5. Please share your stories of infants or small children with celiac. Let me share my situation... I am a 28-year-old mother of four little girls. When I was around age six, I was having major problems with diarrhea, vomiting, and weight loss. I was skinny with a bloated stomach and looked like a starving child from Ethiopia. My parents took my brother and I to doctor after doctor without any relief. They tried everything and I was slowly starving to death. Finally, they visited a health food store and an Indian doctor who was in there suggested celiac disease and to take my brothers and I completely off of wheat and gluten. Within a few days, I had stopped vomiting and in just a few months I began to put weight back on. For the next four years, I stayed completely off of wheat and was fine. I was never tested for celiac disease by a doctor but my parents assumed that is what I had. My father became a pastor and our family moved across the country to take a small church in the south. "Miraculously" we began eating wheat again without any of the previous symptoms. We thought either we had outgrown celiac disease or the LORD had miraculously healed us as a blessing for my father becoming a pastor. Two of my brothers (who had similar symptoms to me) were also able to eat wheat again. None of us have ever had any problems again and we all eat a lot of wheat and gluten on a daily basis. If anything, we are overweight! We had all but forgotten our earlier years. Fast forward 16 years...I have given birth to a beautiful little girl (third child for my husband and I) weighing 8 lbs 8oz at birth. I breast-fed her and began supplementing with a little formula since she didn't seem to be "getting enough". Around four months old, she is only weighing 10 lbs and looks incredibly skinny. She wasn't even registering on the growth charts! She had diarrhea and terrible diaper rash. The doctors scared us with cystic fibrosis but she tested negative. They didn't have any answers for us but suggested we start her on Nutramigen formula. We did and she began to gain weight slowly. She did not hit the bottom of the growth chart until she was 18 months old!! We started her on all the normal infant foods and she would occasionally have "blow-outs" with terrible diarrhea. We thought it was a milk allergy since she gained weight on the milk-free formula. She is almost four years old and has stomach aches after eating on an almost daily basis. I keep figuring it is just a little dairy slipping into her diet here and there. She is at the 50th percentile in growth now so I just figured she had lactose intolerance or something. Every time we take her to the doctor, they just check to make sure she has gained weight and that seems to be all they care about. Two years ago, I read an article about celiac disease in a magazine and it suggested that you never outgrow celiac which shocked me! I realized that I might still have it and went to the doctor and requested a test. Since I was having no symptoms, my doctor would not perfom any tests for me! Even with the problems my two year old was having. I just let it go and continued eating wheat. Now for my problem... Last year I gave birth to my fourth daugther, Bethany. She was born at 7lbs, 11oz and 21" long (and completely healthy although she did seem a little flabby). I breast-fed her exclusively from the start because I did not want to repeat history. Around four months of age, she starts dropping off the charts. I am thinking, how can this be???? She is doing the exact same thing as her sister. I am thinking it must be that I do not have enough fat in my milk so I tried everything and nursed for hours and hours but it did not help. I thought maybe it was a milk allergy and some of the dairy was coming through my milk. When I got off milk, it did not help. She was getting worse and worse and having diarrhea so I stopped breast feeding and started the Nutramigen and rice cereal around 6 months. After a few weeks, she could not tolerate it. She was projectile vomiting and had awful diarrhea. I stopped the Nutramigen and just gave her rice cereal, baby food and apple juice. After a couple of months like this (with diahrrhea all the time and constant irritability) I have her down to just rice cereal with baby bananas and apple juice. At 10 months old this is a very limited diet. She is 11 months old right now and weighs 13.9 lbs. Her blood panel is showing low B vitamins, low potassium, and low iron. She is starving to death before our very eyes!! For some reason, the celiac disease came into my mind and I had a brain flash! What if it is celiac diease? I am thinking, but she didn't have any wheat! She has had cherrios and they have wheat flour in them but she has only had them very rarely. Could the baby rice cereal or Nutramigen have something like gluten in them? Just to test the theory, we took her off everything except baby food meats, veggies, fruits, and whole milk. Her diarrhea has stopped and she has had normal BMs for the past two days!! Her diaper rash is even going away. I have called my doctor and asked for a referral to a gastroenterologist. We do not have an appointment until Sept 15th. What should I do now?? Please send any helpful stories, information, or links. This may be the answer for my other daugther who has stomach pains often as well as my sister who has had stomach problems for the last couple of years (and is very skinny as well). Thank you for bearing with me and reading all this. Sincerely, Rachel