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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 Electra375

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  1. When Does This Get Better?

    It sounds like you need to heal your gut. It takes time. I didn't see, are you dairy free? A good portion of Celiacs go Dairy free in the beginning (both short term and long term). Sugar can irritate the gut. I hear good things about the Specific Carbohydrate Diet. I've never had a negative feeling about Celiac. I could not allow my children to experience a negative thought about it. We must eat to live and they must accept with open arms their limitations (2 are Celiac). I was so happy just to know why the first was sick and that the cure was so easy. Now, I eat GFDF, I've been most impressed by the choices in the HFS. Our grocery budget is quite large to accomidate special gluten-free items, like cookies, bagels, donuts, etc. Whole Foods Gluten Free Bake House is awesome -scones are available too. I do drive about an hour to WF and stock up on freezer items, I bring a cooler with me. Other than a CC issue, I find the desire to cheat is not worth it. I've picked up a chicken nugget from the non-Celiac kids when we've gone out. And I thought about and put it down. My 5yr old loves Chic-fil-a Chargrilled Garden Salads, he gets excited about them! Yeah, I'm serious, 'mama, it's got broccoli?' yes 'oh goodie'. I think if we as adults had this attitude our entire demeanor would be of a healing nature. The mind is a powerful tool, harnass that energy and focus it on healing. I think adults need to buy themselves gluten-free treats. I love choclate, I can eat some dark varieties, so I do. People always seem to ask me "what do you eat?" I find this a very strange question, really I do. Is American so stuck on processed junk that we've forgotten what real food is? I get the feeling sometimes that b/c I cook, I'm a rare gem, what are people eating out 7 days a week? We eat out 1X per month, maybe. I actually took a poll on a really 'crunchy' sort of mommy website and the results astounded me. I had no idea people ate out so much. I don't like eating out, I don't like the atmosphere, I can't talk or hear myself think, I don't like crowds, I don't like sitting and eating at tables were other's have (germ thing, I might be a little OC on that). My dh and I have on many occassions taken out the best steak cuts from our butchered cow in the freezer and cooked ourselves a romantic meal while our kids were at a friend's house so we could have our anniversary together. We stayed in and had a wonderful time. I was not raised in the US. SO, here is what I like to eat... gluten-free Bagel w/ PB, other nut butter, butter, jelly, cream cheese. Coffee w/ non-dairy creamer Kinninniki... Donuts Amy's entrees (lots of choices all vegetarian, but also a lot of GFDF) Pamela's cookies Meat, veggies, potatos V8 fushion dark chocolate (somewhat expensive kind) What my kids love... Pamela's gluten-free Pancakes or Waffles made from the baking mix Chocolate chip cookies (toll house recipe) made from the baking mix above Cookies (mi-del, Kinniki toos oreos, glutino waffers w chocolate) Fresh fruits - raspberries, strawberries, cherries, apples, bananas, grapes, baby oranges (clementines) I do buy these without too much cost consideration, it's okay that raspberries cost $4/ pint, it's not like we're going to McD everyday at $24 a visit or more. My mom is visiting, she is diabetic on a strick low carb diet to control it w/ meds. She views her limitations w a very negative attitude, like she is deprived on a "diet". Celiacs (who are not diabetic) have very little to feel deprived about IMO. There is gluten-free bread completely safe in some grocery stores now and some of it is good. A diabetic can't just go out and buy bread and eat it without limitations, my mom can have 1 slice of a low carb bread -- just 1. If I wanted to, I could eat the entire loaf of gluten-free bread. When mine comes out of the oven, I dare say we eat half while fresh and hot with lots of butter... Anyway, I think a positive mind set helps tremendously. Someday you will be better, I'm truly sorry 4mo has not made you better. 4mo is a long time to stay positive. Words from my 5 yr old -- Yeah, I love salads! And the biggest smile when I can say No to "it's got wheats?". He had to have a cut up fruit container at the WF market we were at on Friday, expensive yes, but he eats it all and loves every bite, worth the $4! That was our eating out.
  2. Well, gluten causes nerological problems and I dare say you are one of the ones affected by gluten in that way. Being gluten-free and learning to live comfortably without feeling gross is well worth it IMO. Feeling better 99% of the time or 99.9% of the time should entice anyone to move over and accept the risk of CC. If you are careful, CC is less of an issue. What happens if someone gets glutened, depends on the person and the quantity and type of glutening. My son (the diarhea type Celiac) gets stomach cramps, lack of appetite, leg cramps, headaches at the worse end and simply disagreeable, mood on the lower end. These reactions happen within hours to as many as 18 hours later and last 1 day to 3 days. I should say he is just 5. In the nearly 3 years gluten-free, he has had 3 glutenings, all b/c of my dh's carelessness. 1) dh left cookies in a camp box accessible to child, 3) dh bought soft tacos and fed child w.o my knowlegde, I was napping from a long day and pregnant 3) son found dh's crackers and decided on his own to eat what he knows he should not, this was most recent and he is 5 now, but I doubt he will do it again. My other son, a baby, had no outward signs, he just lost weight. Not good, I have no "signs" to watch for and thus have a baby scale for weekly weigh ins. Although right now that is to get his weight back up and his access to gluten is extremely limited and the entire house will be more strictly limited once he is up and moving around able to pick stuff up off the floor (ie other kids, crumbs in the kitchen and dinningroom etc.) If you are really scared of getting a gluten reaction, then be careful. Contact the food manufactures of things not specially labeled gluten-free. Don't eat out, it is a risk. Don't have other gluten in your home. My son's glutening came from having gluten in our home and my dh not thinking. For example when eating out - McD fries have been certified gluten-free, however they are made with wheat and dairy derivatives in the par frying before they are flash frozen. Some people react, my son is one of them, some do not as GIG stated they are okay. I knew before the fiasco that my son reacted to them and they are just a no no, well McD in and of itself is a no no -- wheat starch even in their grilled chicken breast... Some say the oil might be CC, but who's to know, I just know my son did react and now will not eat FF of any kind. If you must eat out, call ahead and find out about the restaurant. Our chic-fil-a is safe for us, I called and asked questions about the kitchen, the preparation, etc. We can eat the Char-grilled Garden Chicken Salad and the fries if we want. That does not mean every Chic fil a on the road is safe though, probably, but not definite. Eating out is never 100% unless it is a 100% gluten-free restaurant which I have yet to see. I do take risk with foods not specifically labeled gluten-free for my older son - now. I did not early on. I will not with the baby. Fortunately, some companies are more than willing to say whether or not their products are produced in a plant with wheat ingredients and if CC is an issue. Many gluten-free eaters go years without a CC or glutening. Some are more sensitve than others, there really is no way to tell if you will be ultrasensitive or not. There is no way to say 100% that you can never get CC or glutened. But I can say if you are careful and don't cheat, your chances are low and feeling yuck 1X per year for a few days is probably better than 365 days of yuck. In the early days, avoid dairy and oats. If you are DQ2 consider never having Oats safe or not, DQ2ers have the potential of a reaction similar to gluten from the oat protein, not a CC issue.
  3. A Lady Thing

    Maybe your thyroid has decided to give out on you??? Or your pitutitary glands??? I haven't noticed any of those kinds of changes, but I'm 6 mo PP. Have had very HEAVY bleeding (as in can't leave the house with a super plus tampon and pad on). I have hypothyroidism, but when I say that I have to clarify the endo turned me away, my GYN gave me a script for Synthroid just 3 weeks ago. My TSH levels are normal, my T4 is a hair line within range on the low end. Celiac is easy compared to thryoid and endocrine system problems.
  4. I supply my child's food, end of discussion. This child is not permitted to eat anything unless I bring it for the child. My ILs are so stupid, I would not trust them. My MIL is not capable of understanding. My ds has been df since birth and he would get 'worse' diarhea and I'd ask what he ate with them. Answer "mashed potatos" Did you make those with milk "yes". He Can't have milk. "oh, I forgot" My mother makes comments about my dd eating too much. A disorder in the making. We don't see them often enough for me to make a huge deal out of it. For that ILs moved far far away and we have not seen them in several years THANK GOD!
  5. Dr Fasano (Univ of MD Celiac Center) said this to me - The biopsy is what we show teens so they will understand they CAN NOT eat gluten. If they do, they will likely be Type I diabetic in their late 20s early 30s. Type I - insulin dependent, non-reversible, limb threatening, life threatening Having known a few type Is who either could not get a handle on their levels or chose to cheat, they lost toes, go blind, and have organ failure. Enlisting a docs help, might help, it might not. A firm dx is about the only way a doc will sit there and lay the line down on a teen. 14 is tough. He is going to do what he wants to do. Remember 14, invinsible? You could get stomach or intestinal cancer and die, does not mean much. My dad just had 1/3 of his colon removed for cancer, likely undx Celiac.
  6. Rice Intolerant?

    I find the rice and tapioc products shoot my glycemic index up too quickly and I feel blah yuck. It may just be a sugar thing and not a rice thing. I can eat a product like this w a protein, but not butter, jelly, or plain.
  7. Very nice. BTW - whatever happened to character lunch boxes that came with a thermos??? I was in a store that had all the school stuffs out and they wanted $9 for a zippered tote for a "lunch box", it didn't come with a drink thing at all!!! I guess I'm going on the internet to look for lunch totes that are large enough to fit the stainless steal thermos soup carrier and thermos and fruit carrier.
  8. http://www.cafepress.com/sansgluten http://www.cafepress.com/SillyYaks http://www.cafepress.com/glutenfreekids I like Sansgluten b/c they have shirts that have the Definition of Celiac. My older child likes SillyYaks b/c the purple Yak is cute. I found glutenfreekids b/c for my baby it is simple, straight forward and list out what gluten is. I have for my older child a button "don't poison me" and a medical ID braclet that he never liked to wear that is now too small, I ended up putting it on the velcos of his shoe. The baby is new territory for me. My other was 3 at dx. It is somewhat different in that the baby can't even ask "its gots wheats?" There are also some allergy type ts and things available on the net. Since I've been dealing with people in preschool and church nursery for a few years, I've found that people understand the word "allergy" more than they do "autoimmune genetic disorder". But you have people in general who will dismiss food allergies and even medically dx Celiac Disease as hog wash and not give a beep (mostly I find that is with my dh's family and a few of my own extended family members). A medical ID bracelet clearly identifies a serious medical problem and I find most people respect those.
  9. I thought I'd share how I plan on alerting care givers at our church's nursery. I'm going to make a diaper bag and embroider a Med Alert that states in bright bold Red and Black FOOD ALLERGY (Might get an embroidery Medical Alert Symbol $8 to by the design) NO GLUTEN NO WHEAT NO BARLEY NO RYE NO OATS I never leave any message on my children with just the word gluten, you don't know how many times someone has said "oh, poor thing is diabetic" or "I try not to eat too much sugar either it makes me sick". We can't afford mistakes. I also order things from cafepress.com. My older child is out growing his first set of Silly Yak Ts, so I just ordered him new ones. I ordered one for the baby that is just like above, nothing cute or fancy. The baby may not stay in the nursery once he begins to crawl, I can't isolate him away from other crawler, after speaking to the director, the don't get that a child with wheat or oat proteins on their hands transfering it to a toy that my child then touches and then puts his fingers in his mouth is enough to make him sick. Unfortunately, my baby is a 4 finger sucker and will not take to a pacifier. A paci would make it a bit easier b/c he would not likely put anything in his mouth w the paci in it. And the nursery serves Cheerios and Goldfish.
  10. New With Empty Pantry

    Please take your kids to a Pedi GI knowledgable in Celiacs if possible. The more dx kids the more celiac disease gets IT on the radar of regular pedis and docs. I was unfortunate enough to have my 2nd child go undx for his first 3 1/2 years of his life, he lived in stomach pain. I knew something was wrong, I went to a lot of doctors, I have his records, I was labeled a difficult parent and crazy on one chart!!! I knew he was in pain and NO ONE listened to me. Finally, a doctor with a Celiac patient happened to see us by chance and we got the necessary tests run. He now is gluten-free, but the neurological problems persist, he is possibly SID or some austim spectrum disorder - we're working on a dx w a psychologist. He's 5 and still emotionally 3. The sooner kids are gluten-free, the less time there is for damage as well as developing taste buds to desire wheat. My 3 1/2 yr old after he got hungry again, really had no trouble taking gluten-free foods, even some I find totally horrible - he likes. I run a household of 6, 3 must by gluten-free, 3 don't have to be. I have 2 kitchens (I'm lucky, well maybe until you have to clean 2). My upstairs kitchen is gluten-free only baking, the counters on 1/2 are gluten-free, the area between stove and sink is "double" and there is one tiny section with the old bread box and a jar of PB that is Gluten and labeled! I didn't want to have to go downstairs to make PB&J for my 2 non-Celiac kids or my dh. All dinners are gluten-free, it just makes my life easier. All holiday baking like cookies, cakes, meals are all gluten-free. I will make glutenous cakes downstairs for the kids to take to school, it's too expensive not to. I do currently have gluten-free and Gluten Cereals in the house for breakfast, separate shelves and labeled. And at lunch I will occassionally make 2 batches of Mac and Cheese. Lunch is probably the most difficult meal for me personally. I did not replace my stainless steel pots and pans. I did buy new baking sheets and pans though. Since I love Cast Iron all my Cast Iron is gluten-free. It's really a personal decision on the cookware, can gluten get stuck into a place I can't see on this item was my decision maker. best wishes
  11. I think some do go through detox, it depends on your level of gluten eating before combined with level of sugar, I found a lot of the gluten products I ate were far higher in sugar than they should ever have been. I get headaches from sugar withdrawl more than gluten withdrawl. I crave chocolate like crazy the first few weeks into gluten-free (I've gone on and off and on again for a gluten challenge). When one of my children was dx, he slept the first month gluten free. I was worried he was going into a diabetic coma or something from lack of eating. I now think it was his body healing and catching up on deep restful sleep he had missed from the pain he lived in. Now he gets headaches and leg aches if he eats gluten in addition to gastro symptoms.
  12. When our then 3 1/2 yr old son was dx w celiac disease he was not eating much, his stomach hurt, his legs hurt, lets face it he just plain hurt all over. His favorite foods were fruits and veggies, still are. I went and bought raspberries for him (dh said not to think twice about the money). He did not like the gluten-free substitutes for some time, not b/c they were not tastey, but b/c he associated that type of food with pain. We had to work a VERY long time on food associations. A mother whom I met at a local support group said her doctor gave her a script for Periactin to make her child hungry. I called our pedi and asked what she thought and she immediately prescribed it for me. The directions were to take it everyday, but I'm not that kind of medicine taker, so we would give it to him for a few days and he would start to eat, then we would slack off and when he stopped eating we would give it to him again. Later our Pedi stated that was the way the new recommendations said to take it!!! I made a lot of gluten-free food which was thrown away in those early months. It was a full year before he was "hungry" and it was a night in October he came into our bedroom, I was nursing his sister to sleep, it was 10:20pm and he said he was HUNGRY. I about cried for joy, really. He ate at that time every night for 2 weeks straight. I also had made the decision earlier if he never at a gluten-free processed product he would be fine. He likes eggs, meats, poultry, broccoli, carrots, green beans, peas, fruits, etc. He does not like potatos that much or rice. It's okay if he eats a very healthy diet of fresh foods. He has learned over time that gluten-free banana bread is good, but there are a lot of things he will never eat again even if they are gluten-free. He's 5 now, he is small, but he is pretty healthy. celiac disease really messed him up mentally he isn't really 5, he missed his first 3 years of life due to pain. He was glutened this weekend and violently threw up, had intense stomach pain and his legs hurt. He obviously lived like that until Mommy stopped feeding him Gluten, which he turned away most of it anyway. My kid didn't like bread, sandwiches, cereal, chicken nuggets, cookies, donuts, cupcakes -- he'd rather have strawberries... I just wanted to let you know what you are experiencing is normal from my experience. Give her time to heal and time to accept gluten-free substitutes really are not going to hurt her. Just before my ds stated he was hungry, I was looking into psycho-therapy with a psychologist who specialized in childhood eating disorders, she was not familiar with celiac disease, but she was willing to help us. Fortunately, I didn't have to go that route, she was about 3 hours away in DC metro area.
  13. Foods can aggrevate sinuses, like a seasonal allergy. Dairy is numero uno in that department. Also my littles get sinus and coughs etc when they ingest gluten.
  14. Remain on gluten until the biospy, lots of it, especially in smaller children as they heal quickly and begin healing between meals of gluten. Are they sure your son's IBS is not Celiacs? Or possible Gluten Intolerance? I always wonder about that now that I know about celiac disease.
  15. I need a bit of clarification - your 3 1/2 yr old was on a mostly gluten-free diet when you had him tested? That might be the only reason they came back negative. Are his symptoms only when he eats gluten? If you need a medical dx, then I would suggest having him eat gluten (lots daily) and retesting. Consult the pedi GI first b/c the length of time varies and things can crop up that would cause the end to eating gluten more quickly than originally planned - we had this happen and it was a bit scary. If you are happy w out a med dx, and symptoms are gone gluten-free, you have your answer. Although as a parent of young children, one who is not med dx completely, it is much easier to have the med dx when it comes to schools, camps, etc than not. Untreated celiac disease in a small child can lead to Type I diabetes for that child, all the more reason to get a med dx and try to halt that from occuring in a 2nd child.