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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 Pattymom

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  1. I have three gluten free kids, one who tolerates it fine, though she gets it so rarely out of the house only, so who knows. All three have had negative blood tests, but I finally did it anyway with much resitance from the MD. DD was/is very tiny and had stopped growing, huge tantrums, anxiety, etc. Gluten made a huge difference in the moods, though we found she also needs to be off dairy. She is still tiny however, and it's been a few years at this point. The boys get sick very quickly from gluten if they get some accidently, and they realize that it makes them sick, so they dont' want it, not longer a battle to want to eat it. I think they needed to be off long enough to really better before the reaction to eating a little gluten and feeling awful was obvious enough for them, but we did get there. Also, at this point, I just started writing celiac disease, no gluten on all the health forms I fill out, for scouts, camps etc, and no one has ever asked for proof or blood tests. Frequently there is a space on forms for food issues, allergies, etc. that is seperate from what the MD signs, so I just write it in myself. I know that it's true, and I think since I say it so clearly, the kids believe it too.
  2. Haven't been on the board in a while, but we are going on out Girl Scout camporee this weekend, and the event planner was not nice or helpful regarding the menu. Unwilling to either work with me, or refund part of the food money. Meals are french toast, mac and cheese, and pizza--argh. So we are taking all our own food. I am actually a Leader of two troops-one older girls with my non-celiace daughter, and a daisy troop with my celiac daughter. Even with our older girl troop we have a dairy free, a vegan, a dye free, a beef free, and a kosher, so meal planning is tough, but we do it-think make your own tacos with bean dip and dairy-free choices, turkey dogs, etc. My daisy troop is gluten free b/c I run it that way,last year we had another gluten free family involved, and it was nice for the girls to share that. Only once did a mom send in a treat for the group that my daughter couldn't have. I think the fact that I am used to helping others and our troop life is set up to work for us, that this even got me so frustrated. it's not that I expected them to totally meet our needs, but they wouldn't even discuss it or try. It's not like she's just picky and I was saying she doesn't like orange juice, you need to get apple. It's a health problem, and it's tough enough to deal with being different without the adults making hard. Boy scouts for my son has been much better, they are both gluten free as well, and the resident camp program made seperate meals for them, covered in plastic prepared seperately. Plus, they got to go through the normal line, and just ask for the gluten free tray when they were up there, so it felt normal. My older son's troop is also great on regular camp outs-they evn bought him his own pancake mix. He also went to a 3 week chamber music camp that was amazingly good. Even got him gluten free lasagna when that was being served. It's only 32 kids or so a session, but they really went the extra mile. Of course, that is paid staff, not volunteers like girl scouts. Still I feel your pain, and I would totally send along jelly beans ( wrap them like a present so it is a surprise for goodness sake). It's not a child's "choice" not to eat jelly beans if they have gluten in them, it's a medical necessity. They used the "it's your choice" line with me about the camporee too. It's not a choice, or believe me, I would totally choose to eat the donuts. Patty
  3. Sounds a lot like my DD, now 6. She weighs 33 lbs and wears a 4T. She has been totally gluten free since 3.5 year, yet still doesn't gain or grow very much. Seh has been evaluated by an endocrinologist as well, who thinks it's a GI issue. We did have the colonoscopy/enod, even after a year off gluten. My brother has Crohns disease, and I wanted to rule out other things. The test wasn't actually very traumatic, nor was the prep. She took miralx all day, and lots of juice, jello and water ice-which was a great treat for her. her older brothers and sister were suitably impressed when "poop shot out of her bottom" which made it a great game. The actual event was fine. We went to Hershey Med, but she was in my arms until she was asleep, and in my arms again before she woke up. They wheeled us into the room on the gurney together. had a little chocolate in the mask, so she could smell it--first let her give it to her suffed animal. It was traumatic for me, but not really her. the bad news was they found nothing at all, so it's good news in that there was nothing else bad going on, but still no explanation for her slow gain. She is following her own curve on the growth chart now, after a year or more of not gaining and growing, but it is under all the regular curves. Since her growth velocity is normal, it's not be thought of as a medical problem. I still feel torn about embracing her smallness and looking for a reasonable cause. She is also off dairy, which gives her awful eczema. We have tried various other things: zinc, enzymes, probiotics. Nothing really changed her growth rate much. I don't regret the scope, it was good to rule out the scary stuff. Patty
  4. My eldest, now 14 had terrible awful teeth, canines that came in with holes basically, and most of his baby teeth as well-He was just diagnosed last year, though he had GI symptoms since aroudn 5 or 6. My youngest, 5 also has lots of dental issues, she's been gluten free since around 3.5ish, had two teeth extracted, and I just ofund two more cavities this week, sigh. Non-celiac dd, 11, great teeth, no issues. Patty
  5. I have 4 kids, 3 need to be off gluten, our house is gluten free. My youngest was gluten free her first two years after being a screaming infant for the 6 weeks until we worked it out. anyway, we do make cookies, and crackers, and lots of gluten free foods- I try not to think of them as substitutes, but just as food. Doesn't everyone deserve a cookie now and then? You are right that it easier in that my youngest likes all the gluten free stuff b/c she doesnt' know what she is missing. My 12 year old and I do know, and thus miss donuts and real oreos. My youngest is 5, and is used to asking if things are gluten free when when we are out, and knows not to eat something without checking, it's just how it always has been. I do tend to take gluten free offering along when go out where I knwo there will be gluten snacks. Yes, when she was a toddler she wanted what everyone had, but I always gave her, her own kind, and it worked out well. Lots of people don't understand, some people do. What gets me is when people who are eating the cake, look at me/us and apologize, especially if they say, "sorry, this is so good, sorry you can't have any" Yeah, OK, that makes me feel better, when in reality I don't feel bad anymore, in fact I feel much better than when I ate gluten and no cake is worth feeling lousy again. Just keep trusting your Mommy instincts and providing for your children. If you they want cookies, go for it. Patty
  6. We gave up on the bread-I use corn tortillas at home--make and excellent grilled sandwich, and rice cakes when we are out-pb&j. or we just make roll-ups--meat and/or cheese rolled up. chex cereal is gluten-free, though we had trouble with the flavors, we tolerate the plain. they make good muddy buddies and other mixes too. Learn to bake-carol Fenster's cookbooks are my favorite, but that's how I make cookies, and muffins are a breakfast staple. We also make a lot of smoothies for breakfast-fruit and soy milk ( some of mine are also dairy free) I freeze the fruit to make the smoothie thicker. We also do well gluten free shopping at a "scratch and dent" store-Amelia's in one such chain, but there are 2 other within driving distance of our house. Little stores that sell dented and overstocks from other places. It's hit or miss, but I have gotten Pamela's cookies for .75, and enviro kids cereal for $1 a box, I always buy it all when it's there--also these excellent slice and bake type cookies called gluten Freida's so great-unfortunately never saw them again, adn I 'm sure I couldn't pay full price. got Ian's past kits for $1 each too--I bought 20. anyway, usually the gluten free stuff goes really cheap and sits their waiting for you b/c no one else knows what it is. See if there is a store like this near you. It does get easier once you learn and your child adjusts to eating different things. health is priceless. Patty
  7. My dd is now 5, and it has gotten easier in that she knows waht she can anc can't have, and we have very supportive friends, for the most part, but I do remember one playdate event that I spent diving on the floor after a trail of goldfish before she picked them up. It was kind of a nightmare. I think I did limit some groups contacts. I always took our own food, and if it was at our house, I provided the snacks or kept it gluten free--encouraging fruit and stuff. while no one really understands, especially in the beginning, most people I have met, when it is explained to them are really great. My son's cub scout den has agreed to stick to gluten free snacks, and we take turns bringing them--it really makes him happy to be able to eat snack there. I wouldn't give up on people until you have a chance to explain it to them. Try talking about how hard it is for you to take care of him, rather than how they dont' understand. usually feelings can be understood. As kids get older, more kids will have more different health issues, and more parents will understand this better. out of the play group arena, my 3 gluten free kids are all well accomodated. Even in a snack line situation are orchestra rehearsal break, the gluten free food are at the beginning, and my son gets to go through first before it gets contaminated. As far as a gluten free home, it was easier for us with so many off, and my kids ( even my youngest by age 3-4) knew what she couldn't eat outside, and always asked. Issue was for trick-or-treating teaching them not to tell each person that they couldn't eat that because it had gluten, but just take the candy, say thank you, and we'll trade out later. Hope it works out quickly, hang in there Patty
  8. When my dd,now 5, was born, and was fussy, gassy, exczema covered, etc. I started by taking dairy, then wheat, and then gluten out of my diet, and she got better. At the time I figured it was something she would outgrow, and never thought to consult the MD for something I could fix myself. Seh was very healthy and grew well until aroudn 2 when the MD thought we should try gluten and watch for results--she showed no obvious symptoms at this time, and blood tests after a few months were negative, though low and behold she stopped growing. And since age 3 when this was clearly charted it has been an odyssey of tests and trials, and attempt to get her to grow. She is now off gluten and dairy again, and exczema free-except when she cheats for a little ice cream, and growing again--though alas no cath up growth for the year and a half she lost, so still very very small for her age. I have no regrets for taking her off as a baby--it made the first two years of her and my life so much better then they would have been if I waited on testing and such. She has no developmental issues, other than being short, After readign all the health issues and such we could have faced, I feel good that her infancy was safe. My regret is not trusting my instinct and keeping her off gluten forever. It was so hard at 2 to let her eat what I had spent 2 years of her life avoiding. Never felt good about it, but felt " I had to give her a chance at a normal life," her life is fairly normal, LOL< she takes dance, likes princesses, plays with her friends and siblings and dolls, etc. she just doesn't eat gluten. Note that when I stopped gluten for her, I felt great and I didn't know I was really sick before--just often bloated and gassy. I had the blood tests done, and mine were positive when she was 4 months old, and that was 3 months off gluten ( well, I know now I was still getting some) Trust you instincts and take care of your baby. Patty
  9. I have 4- 3 are gluten free, only one has other food issues. all are wonderful ( except when they aren't) Having children is a wonderful amazing thing, and there are no guarentees that they will or wont' have any given issue, if you are already gluten free that would actually be an problem to handle. what I think I wanted to say, if you want children, have children-it is so worth it, however they come. Patty
  10. my dd takes a day or so to react to dairy in the form of eczema, I don't remember exactly how fast as it was as an infant, but I think some reactions took hours, and some took days. I remember being told to watch for at least 2 days before I considered something clear. As an infant, she reacted if I ate gluten, dairy, corn, soy, and nuts--now it's just dairy and gluten, so it got easir. Patty
  11. I also have a tiny one whose weight gain stayed slow even after going gluten and diary free-she just hit 30lbs at 5 years. She is free of painful symptoms now, and is growing along her own curve (about the -1% or so) but her growth is parallel to the curve rather than dropping or a straight line as it was before. So her growth rate velocity is fixed, but she didn't really have catch up growth. The endocrinologist is happy with the normal rate and is only following her every 6 months or so now. Hopefully catch up growth will come later. How is your son's growth rate? The MD are good with this now b/c she is symptom free and growing at a healty rate--it is hard sometimes that she is so tiny, but tiny and healthy is better than tiny and sick. The vitamin supplements do seem important, also extra zinc. Good luck, and know that you aren't alone. Patty
  12. I'm a gluten free Leader ( cadettes and now daisies this year for my younger daughter) it seems unlikely they could sell enough to make it profitable. We did buy and donate soe to a battered women's shelter last year-and the food pantry idea is great too. I made a gluten-free carmel delight like cookie last year-I got plain shortbread glutino cookies--covered them with melted carmel mixed with toasted coconut-drizzled with melted choc. chips--yummy. Our daisy troop is going to be gluten free, since my dd and I are gluten free and I think two other families in it also have at least one child with gluten issues. I think we will sell the cookies, but not serve them-I"ll have to work on my substitutes. All the other mom's were very positive when I asked for gluten free last week. My older troop had gluten free Thinking Day sleepover last year-didn't announce it, just did it and all the food was yummy ( myself and one gluten intolerant girl in that troop ( not my DD)) But alas, we do sell and not sample. Patty
  13. My dd was tested and i being followed by a endocrinologist, everything was normal. The Endo seems to think that she isn't growing b/c of the lack of weight gain and sent us back to GI, who cleared here again fo other GI issues. She hits the minium 2.5 inches a year, though not a fraction of an inch more. She is off the charts in size and weight, but her curve is parallelling the line at this point ( 38inches, 29.5 lbs at 5 years) Seh was on the 15% line until she turned 2. We don't know what else to test for, so are just trying to adjust to her being small. Seh is developmentally fine and has no significant symptoms if she is off gluten and dairy. I was also hopign for a great growth spurt, btu 1.5 years later it hasnt' come. Patty
  14. Been there, I like Earth Balance for butter, we use soy milk for smoothies-Silk, chocolate is great. I use rice milk for cooking-West Soy plain. Soy milk seems to stop baked goods from browning right, weird looking pancakes, so we use rice milk in stuff that needs to brown. Also coconut milk is yummy in baked goods and smoothies. Ice Cream we like Simply Decadent--turtle flavor is so yummy. Yogurt we like So Delicious, they also make good cie cream. I haven't found a cheese that is worth the extra money yet. Alas, that is what I missed the most when I was nursing DD. She is 5,so I can have cheese again, though she still can't. We also eat a lot of sorbet-yummy. Frozen peaches or bananas in the food procesor, yummy frozen treats. We have a super potato soup recipe from a friend that uses purreed cashews-so cream As much as I missed cheese, I am so glad I was able to do what I did for my baby. Especially now, hearing about how sick some kids were I, I know made her early years safe and healthy. good Job Mom! Patty
  15. We had a coconut phase too. It was yummy. alas, calorie pushing doesn't seem to help dd much. and Ds eats voraciously and continuously. that said, we also fry a lot of their food, eat bacon more than we should. I would love to hear more ideas to try. Patty