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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 Terri-Anne

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  1. My gluten-free son also started to complain of tingling/almost-pain in his feet when he was old enough to describe the feeling. At first I suspected they were falling asleep from his position on the chair. But when the problem persisted, and occurred on and off, regardless of position I assumed it had something to do with diet. I contacted my dietician who advised me that, though it was rare in our society, some people with vitamin B deficiencies experienced this tingling feet sensation. The reason a person on a gluten-free diet would be vitamin deficient, is that they are not ingesting the same "vitamin-enriched" wheat foods that the mainstream diet offers. ie, "enriched" white bread, "enriched" cereals, etc. She suggested I put him on a daily gluten-free multi-vitamin, ensuring it contained the vitamin B that he was missing. I followed her professional advice, and as long as I ensured he took the vitamin daily, his tingly feet stayed away, regardless of accidental glutenings. His severe "cradle-cap" and resulting bald patches also resolved themselves, too! Please take your daughter's complaint of tingly legs seriously, not as a symptom of her "dramatic-nature." I would recomend you try giving your daughter a gluten-free multi-vitamin to see if this resolves the problem. I'm willing to bet it will!
  2. Thank you for your responses so far. The one thing that really puzzles me about Logan is that the main real symptom that remains is this crazy-insatiable-hunger. He does pass considerable pungent-smelling gas after supper most nights but that's pretty minor to put up with. What happened to all that roll-on-the-floor tummy pain? The diarrhea? The head-to-toe rash? He is back on a regular diet, FULL of wheat. How can those mentioned symptoms have all disappeared, IF this is celiac?
  3. Hi Everyone. Let me give you a tiny background on our situation. My son (almost seven years old) began having reactions to wheat as soon as it was introduced to his diet at about 9 months old. He had a severely itchy rash that he scratched until he bled and continued scratching, loose very smelly stool, stomach pains that would leave him writhing on the floor and crying, and he could somehow detect wheat content by merely licking a food item. (It must have "burned" his tongue?) After much trial and error, we determined wheat was the problem and did our best to remove ALL traces of wheat from his diet. About 4 months after removing the majority of wheat from his diet (we were still learning what that included and made mistakes here and there) he was tested with blood tests for celiac which came back negative. However I knew he still had very real, violent reactions from wheat ingestion, so assumed it must be a histamine type allergy as opposed to celiac. He remained wheat free until he was 5 1/2 years old. At this time, Allergist did RAST blood test for wheat as well as 2 scratch tests on different dates, all came out negative. So we did a wheat challenge in allergist office, by feeding my son bread. I fully expected him to writhe around on floor crying in agony, soon to have to run to bathroom with diarrhea, and to be almost immediately covered in the itchy red red rash. Surprise, surprise, absolutely NONE of his typical symptoms showed up. NOTHING. So, Shocked, we took him home and put him back on a regular diet. Fast forward to about 6 1/2 years old. Logan has small breakfast, I pack him a sandwich, and about 5 snacks in his lunch for school. He gets home from school and either has a snack with permission, or raids the fridge/pantry for whatever he can get his hands on........he needs to eat. Supper, he eats a decent portion, easily as much as his 8 year old sister, often as much as myself, sometimes even more! ( I often try to fill him up with loads of mashed potatoes!) About an hour after supper (ie 7 pm ish) he asks for a sandwich. I generally let him have one. As I am ushering him up to bed at 8pm, he begs for something to eat, anything! I usually give in and give him another peanut butter sandwich. In addition to all of this food we often snack on potatoe chips or ice-cream in the evenings. One would expect him to be on the chunky side, a little fat, over weight. But it's the exact opposite. He is tall for his age, but he doesn't have an ounce of extra fat on him. He still looks healthy, but when he sits on the floor and plays with his dinky cars I can see his spine through his tee shirt. He doesn't have a big bloated stomach. He doesn't typically have diarrhea anymore, that I am aware of, but he has had about 3 significant episodes of constipation since going back onto wheat. When he was wheat-free, if he accidentally ingested even a trace of wheat, ie contaminated peanutbutter or something, he would get that hollow-leg hunger, where he could eat and eat and not be satisfied. I can't help but wonder if this huge appetite he now has is related to eating wheat on a regular basis. Do you think it could be? Do you think it might be someting else? like diabetes? thyroid? I dunno? I am tempted to have him re-tested for celiac, but know from experience that our doctors are completely clueless about celiac. I need you to tell me EXACTLY what tests to tell my doctor to order, and EXACTLY what results would indicate "normal" and what would indicate "celiac." If anyone has any other ideas/suggestions, I am more than happy to hear them. Please add your input!
  4. Is this home test, or another like it available in Canada, or can one be shipped TO Canada? Also, does anyone know how valid/accurate the results are? I'd love to have my children tested inexpensively, without having to jump through hoops to convince my doctor to order the testing.
  5. My son outgrew his "allergy to wheat" a year ago, but we used to buy him Mi-Del brand "oreos" that he liked just fine. And if another child was at the house playing with him, I'd often just hand them BOTH a Mi-Del oreo, and the non-allergic child who is used to eating REAL oreos would never balk or leave their cookie uneaten, so I would predict that your son would enjoy them as much as the real oreos too! Also, even though he's been back on a regular wheat-filled diet for a year, he still asks me to bake him the "Wheat-FREE" banana chocolate chip muffins that he LOVED when he was wheat-free/allergic. My whole family would get into those, and the brownies too. For birthday parties I either sent a gluten-free cupcake that I'd made, with whatever coloured icing that my son chose, or I'd send him a wheat-free brownie. The choice was up to him. I think that made him feel like he had some control over the issue. HE got to choose whether it was a brownie or cupcake, AND he got to choose the frosting colour. You could even add a gluten free treat to the top of the cupcake, like M&Ms. I would speak with the host-mom ahead of time to find out what her menu plan was and tried to send along something parallel. If they were having hot dogs, I'd send along 2 wheat free buns, and 2 wheat free wieners, and ask the mom to microwave the wieners for him, explaining cross contamination and they were always happy to comply. If they were having pizza, I'd make up a wheat-free pizza, on a wheat free hot dog bun (for pizza fingers!) or on a wheat free English Muffin, or occasionally on an actual wheat free pizza crust. But my son preferred the hot dog bun/ English muffin texture to the Pizza crust texture. Beyond that, there are plenty of gluten free chips, etc listed in the Dana Korn book, Raising Our Celiac Kids. Most Moms are GREAT when they realize the burden of complying is nothing more than serving your child the food YOU've provided. And as long as the foods you are providing your child coincide with what the rest of the gang is eating, he won't really feel left out. I hope this helps. This Message board was my life line for the four years my son WAS unable to eat wheat. Come here often and ask all the questions you need to! You'll surely find the answers here.
  6. My son is 6 years old, tall for his age, and a healthy looking lean, not skinny looking and not chunky looking. He used to have considerable symptoms with wheat ingestion, and was taken off wheat for 3 full years, from around his second birthday until last summer. Celiac tests came back negative, and allergists tests also came back negative. Re-introduced a piece of bread in allergist office expecting a multitude of symptoms within 30 minutes. When none appeared, we all concluded that he must have outgrown an allergy to wheat, so I excitedly put him back on a regular wheat filled diet. One of his symptoms was insatiable hunger when he was accidentally slipped some wheat. While he currently has NONE of the symptoms he used to have with wheat-accidents, he does seem to have an excessive appetite for a six year old. Please tell me whether you would consider this excessive hunger: Breakfast at about 9 am-peanut butter and jam sandwich Snack at about 11:30-bag of chips Lunch at around 12:30-Kolbossa Sandwich -Meat pie 3:30 pm-Kolbossa Sandwich 6:30 pm-FOUR pieces of pizza 10 pm- Yes I know this is terribly late for a six year old to be up, but his cousins were here and it IS the summertime-Crying because I won't let him eat before going to bed, insisiting he is HUNGRY! My spidey-senses are just a wee bit alerted, as the amount he eats just doesn't seem reasonable to me. What do you think?
  7. Vomiting

    Have you removed the milk, or more specifically the lactose from your child's diet? I recall my daughter having an average of 10 mucous bm's by noon each day, before we figured out what was causing the diarrhea. Once we removed the milk from her diet, the diarrhea stopped too. We later switched her to the lactose reduced milk which she is able to tolerate well. I too am lactose intolerant, and I know that when I ingest more than a tiny amount of lactose, I feel nauseated, cramps etc. Lactose intolerance is also very common in celiac disease until the gut has a chance to heal. Talk about possibility this with your doctor. You may test this theory by removing the lactose from your childs diet to see if things improve. Either way, be sure to discuss this problem with your doctor ASAP as this is definitely not normal, and could signify a serious problem that needs medical attention. Good luck in your search for answers. I wish your child a rapid return to good health!
  8. Does this book have a recipe for light/fluffy hot dog buns, hamburger buns? Some of the ones I buy for Logan, are so heavy and dense, that he usually just leaves them on his plate, eating the meat only. The only thing these heavier buns are decent for is "English-muffin" home made pizzas. I've found one fellow in a tiny local bakery who bakes the best gluten-free hot dog buns, but his recipe is a closely guarded secret, and I'm worried because he has got to be well beyond retirement age already! It would be a shame to no longer have access to great hotdog/hamburger buns, when this local guy finally gives up baking for a living. Also, do you have hotdog bun pans? Where did you get them and what can I expect to pay for them?
  9. Brown Rice Flour

    Lorrie, I don't know a certain "brand" of brown rice flour that is less gritty. But I can tell you that I don't use just one lone flour in my baking. I use a mixture of 2 cups rice flour, 2/3 cup potatoe starch(make sure it's potatoe STARCH not flour), and 1/3 cup tapioca flour, which I believe is Bette Hagman's suggested mixture. For each cup of flour mixture called for in a recipe, I add one teaspoon of guar gum (or could use more expensive xantham gum) to replace the stickiness of the missing sticky-gluten. I find that the finished product is usually as good as any baked goods made with regular wheat flour. The baking is actually light and fluffy and one can barely notice the gritty-difference at all! My entire family is eager to devour the muffins, brownies, cupcakes, and birthday cake I make with this mixture, and only my five year old needs to stick to the wheat free diet. I am assuming you want to use the brown rice flour to increase the fibre content of your baked goods. I am also slightly cognizant of that need but aware that the brown makes a little more gritty product which may not be as palatable to some. So what I personally do is mix white rice flour HALF and HALF with the brown rice flour. 1 cup brown, 1 cup white, with the 2/3 potatoe starch, 1/3 tapioca flour. So, Lorrie, even though I didn't answer your question directly, I hope this suggestion helps you out some.
  10. Let me start by describing my 5 year old son's "reactions" to wheat ingestion. Within an hour or so his cheeks, chin and ears flush a scarlet red and are hot to the touch. This happens EVERY time he ingests wheat, no matter how tiny the amount. Sometimes he gets a rash on inner thighs, underside of arms, and on abdomen, depending on the amount of wheat he ingests, more than a trace amount of wheat = more chance of a rash. He has been known to get hives, but these are not a consistent reaction symptom. He gets stomach cramps, sometimes so bad he rolls on floor, writhing in pain and crying inconsolably. Before long he gets a couple of bouts of diarrhea. Often out of control hyperactivity accompany all of these things. When he was just over 2 years old, he would "test" potential food before eating it, by cautiously licking it and waiting to see how his tongue felt. These reactions to wheat are more suggestive of an allergy than of celiac. (Do you celiacs agree with this opinion?) Pediatrician ran one single blood test to see if it was celiac. (I am unaware of which test he did. He told me he did the only one covered by our health insurance, as the other one would be expensive and according to him, the one he did came back "negative" for celiac.) So for the past 3 years we have become better and better at keeping the wheat out of Logan's diet. Now and again a mistake is made and a molecular amount of wheat is ingested, like in trace non-visible amounts, and Logan pays for it with a "reaction." One of the very few wheat-free mainstream cereals he can eat is regular Rice Krispies, which contain barley malt. Because he is not diagnosed celiac, and his reactions suggest wheat allergy, versus celiac, he eats the barley containing Rice Krispies probably 2 or 3 times a week or more, for breakfast, or for snacks sometime through the day. He has never seemed to have any reaction whatsoever to Rice Krispies and their malt. For about a month, he has told me EVERY day, several times each day, "I don't feel well.", acted genuinely like he was somewhat under the weather, and eaten less than a bird does. I believe he has lost weight, though I don't own scales to verify that suspicion. We become even more diligent than before, if that is even possible! determined to find out what's making him feel ill. Thursday, after getting up at 12:35am with him, severe explosive liquid diarrhea, and complaining of cramps, it occurred to me that he might be reacting to milk, as he hasn't ingested ANYTHING that could possibly be contaminated with wheat, and I became lactose intolerant when he was 6 months old, and his older sister has been lactose intolerant, right since I first introduced cow's milk to her. Friday, I don't let him have ANY milk what so ever, and ask him several times through the day, "How does your tummy feel?" to which he responds, all day, "Fine." Ditto that for Saturday! I think I may be onto something! Hurray! However, my question is this. Would it be normal for him to become lactose intolerant after being able to drink milk for 4 years ( I nursed him exclusively until almost a year)? I guess I know that answer because I drank milk no problem until I was almost 31 years old!Would the small amounts of barley he consumes here and there, such as in his five year old portions Rice Krispies a couple of times a week, be enough to cause enough damage to the villi to flatten them, enough to cause Lactose Intolerance, IF he DOES have celiac disease? I've read that he'd need to be eating the huge (no joke intended! )amount of a full slice of bread a day for weeks to be "gluten-loaded." I think he'd nearly die from eating all that wheat!, his reactions would be systemic and severe! Could the odd dose of such a small amount of barley cause significant villus atrophy?Remember he has been totally wheat-free, as much as is humanly possible, and NEVER reacts unless to wheat specifically. This detective work is SOOOOOOO tough, and the stakes seem so high, especially when your child tells you several times a day, I don't feel well, refuses to eat, but also says he's hungry! If this is lactose intolerance , which I have really no idea whether it is or not at this point, does that point toward celiac for him, even though he's been 99.95% wheat free for the past 3 years? Or is it probably a coincidental lactase deficiency, that developed, unrelated to his wheat problems, like I did? I would be very interested in hearing what you who are experienced with and knowledgeable about celiac think about this situation. P.S. He never eats anything that contains rye, as it's just not a common ingredient in my opinion. And we had to switch him over to the Mc Cann's Irish Oatmeal about a year ago, when we realized he was reacting to "regular" Quaker Oats, and to the oatmeal content in Granola Bars that listed zero wheat in the ingredients. So you see, even the trace amount of wheat present in "contaminated Canadian oats" is enough to set his system off.
  11. Hershey's Chocolate

    Campcour, I am surprised by the response you received from the Hershey company. I called the Hershey company myself because my son had an allergic reaction one afternoon, and I could not pin down what had caused it. I supspected perhaps the Reese's pieces I had purchased in their box, out of a cafeteria vending machine. The lady on the phone assured me it would NOT have been the Reese's pieces that caused the reaction, as they are definitely gluten free. She took my personal information in order to contact me if she discovered anything contrary to that information. A couple of weeks later, my son received a package in the mail from the Hershey company. The package contained a letter that restated that their Hershey's products (specifically the Reese's Pieces) are gluten free, and expressed sympathy for his allergic episode, a denim baseball cap that said Hershey's on it, a nice Tee-shirt that had an animated Hershey Kiss character on it, and a bag of Hershey's kisses. I was quite impressed with Hershey. I've called plenty of other companies, some of whom have said, something to the effect of, "While that product doesn't have wheat in it specifically, it IS run through lines which have previously had wheat in them, although they are washed between products" with no apology, no sympathy, no concern what-so-ever. Just an emotionally flat, dry statement of the facts, in a "cover-my-butt" sort of manner. I am in Ontario. Does this help answer your question at all?
  12. Hi Brandi, To answer your question, yes, I do give my son a daily multi-vitamin. The wheat free diet can be low on B vitamins, and Logan was having adverse symptoms of a vitamin B deficiency, so we definitely needed to do something about it. In my opinion, washing the gravy off did NOT help. While the intentions were good, the reality is that she washed off all the gravy (and therefore wheat starch) that she could see! Tiny, invisible, trace amount molecules, would have remained, and is enough to make the intolerant body react. My son can have a reaction to a food that has been manufactured on factory equipment that has previously had a wheat product through it, even though the company assures me the equipment is washed thoroughly before changing to the wheat-free product. At home, we use two separate collanders. One that only potatoes, vegetables and gluten free pasta are drained in, and the other that only regular wheat pasta is drained in. Before we started this, we found that, despite being washed between uses, the plastic collander must have been porous enough to hold onto enough wheat molecules to make Logan sick. You don't have to be able to see the wheat particles for them to be there, and capable of upsetting your son's system! Keep up the good effort! You are only a week into this, and everything will get easier. Just remember you MUST be very, very diligent, and sort of extreme in your caution in order to avoid gluten. Wheat lurks EVERYWHERE in our culture!
  13. Help!

    Welcome Yitz! When we first deduced that my young son could no longer eat foods with wheat in them, I was totally overwhelmed! When you start reading labels, as your wife will be doing for the rest of her life, it seems wheat is slipped in almost everywhere! I think the best 3 things I did to get a handle on what foods are safe to feed my son are: 1. Made an appointment with a Nutritionist/Dietician. We were very fortunate that she has a keen interest and knowledge about Celiac disease, and was able to give me so much information to look over and learn from, as well as answering my questions face to face. I think our first meeting was over an hour long, while my husband and I fired question after question at her, that she was able to answer fully and sympathetically. At our second meeting, she even brought a box of cereal as a little gift for our son! She was also able to give me a list of specific stores in our city that carry various gluten free products, as well as sample gluten free menu plans to get us started. She has made herself available via email any time for what ever questions pop up, and this is almost 3 years later!(We love you Ellie!) 2. Get in touch with a Celiac Support Group in your area if one exists. Ellie invited us to a Celiac Support Group meeting in our city, and offered us membership etc. Part of their membership package listed stores and which products you can buy where, ie store A may be best for buying soups at, where as store B is better for GlutenFree Flours. They discussed alerts over products that were once gluten-free but have changed ingredients, discussed travel experiences being gluten-free etc. Very informative and understanding of what your wife and yourself are going through.........they've ALL been there! They also have "meetings" where they get together and learn to cook/bake several gluten free recipes. When you try these things in a group, you pick up ideas you may not come up with on your own, and trying new ways/ingredients in your cooking is not as un-nerving! SO you might want to investigate to see if there is a Celiac Support Group in your area. 3. Visit Celiac.Com regularly!These folks are FULL of information and knowledge surrounding living a gluten free life. They are also a sympathetic ear when you need one, and celebrate your "little" triumphs, when they occur, with you! Come here often and ask as many questions as pop into your mind! Vent about how frustrating it is. Anything you say will be met with kindness and caring!I know this from experience! So Welcome Yitz and may GOD BLESS YOU for being a caring and supportive husband. Remember this new way of eating is absolutely essential for your wife to maintain good health. Without it she is taunting cancer, thyroid disease, diabetes, and an almost endless list of ailments! Be her anchor when she feels like throwing in the towel! She'll need you!
  14. Newby, Could you please tell me the source for your information? I'd like to print it and take it to doctor, but from original source if possible. Perhaps that will help convince him to test my son for allergies. Thanks.