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    • Frequently Asked Questions About Celiac Disease   09/30/2015

      This 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 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Store. For Additional Information: Subscribe to: Journal of Gluten Sensitivity


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About MarsupialMama

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  1. My daughter ended up in the hospital ER due to a stomach virus and dehydration (very common) which had gotten really bad. While there, they take the history, etc. Wouldn't have mentioned the gluten thing, except I didnt want them giving her any meds with gluten in it (not that they would know if it had it anyway I guess). In any case, some smart-ass nutrtionist comes in, and then turns around and turns the doctors against us, telling the doctors that "Hundreds of people are on this gluten-free diet thing, when they dont need to be, and it's a fad, and its really dangerous, and these people are putting this child on a starvation diet and she's going to die, you can't get enough nutrition on a diet like this." She even had the gall to falsify my child's medical record (they started doing an intake/output (food/liquid) chart to see what she was holding down) so it looks like, yes, it is impossible to get the required food! We are trying to get that corrected to. I am planning on getting a lawyer if she doesn't voluntarily change them because you know what this turns into - "starvation diet"..... Now the "parents" are crazy and horrible, not wanting to feed their child. Call Social Services. She already threatened us with that. Can you imagine? I can't believe that some UNEDUCATED dippy little nutritionist is threatening me with Social Services because of a gluten issue. It was just a horrible chain of events, and the "nutrtionist" was the only one who made all the doctors upset about it, because they rely on her infomation (since they know nothing about nutrition). OH well. Glad at least people on this board understand more than the average Joe out there. It makes me feel a little more normal.
  2. I guess I'm here to rant!! And ask a question. Are there any tests out there for celiac disease where you DONT have to currently be on gluten to have positive results? Our family went gluten free 2 1/2 years ago and we had phenomenal turn around with me and two of my children's health issues. The difference was like night and day, almost immediately. All the typical signs of celiac were there, and they all disappeared. We never had the tests done because it was my understanding that most were unreliable anyway with children under age 6, and we didn't want to keep her on gluten another day if that was the issue. The test is in the diet, so they say. So we started the diet. To make a long story short, now we've moved to a new state and I am having to deal with a group of doctors that are idiots (no, i don't have a choice in the matter, and no, I can't switch doctors. Part of that "long story"). Anyway, we are dairy and gluten free, and these doctors see this as a "very restricted dietary habits" rather than food allergies, and they think it is a "starvation diet". They are wanting to test my daughter for celiac to disprove "mom's theory" that she has gluten issues. I wouldn't care if they test for it, but even if she comes out "negative" I'm not going to put her BACK on it, when I've seen such huge changes in her. I think that is what they want - they don't want to see a "child have to live with these restricted dietary habits unless it is proven that it is 100% necessary". The difference is, I've lived my whole life SICK because of dairy and gluten intolerances. Why should my children have to live the same way - sick all the time? We use gluten free and dairy free alternatives! What is wrong with that? What I DO care about is if they start pressuring me to put her back on gluten FOR the test. That's why I'm wondering if there are any tests they can do while NOT consuming gluten that are actually reliable. I can't believe how stupid doctors can be. Like I really feel like being gluten free myself?? Like I really feel like spending all the extra time, energy, money, and thought to live a gluten free life? For what? For a made-up theory in my head? Aaaaaaugh! I am trying to not feel attacked, but there really isn't any reason they've given me for wanting to test her (except to prove me wrong?? I dont get it) They look at me like I'm crazy when I have explained the gluten-issue (only when they've asked) with her, and yet I have to admit we haven't had the biopsy done. So they wonder why someone would live a gluten-free life without a "diagnosis." I am so angry I want to shred these doctors. I know they are in a system where "diagnosis is everything" but WHERE IS THE COMMON SENSE!??! AAAAAAAACK!
  3. We all went gluten free for my one daughter (age 4) who showed signs, and ended up finding out that my second daughter's big belly (age 6) and my own 24 years of digestive/health problems disappeared in going gluten free (24 years of suffering, GONE!). In having "gluten" and "non-gluten" food in the house, my daughter kept getting glutened. Containing crumbs is a nightmare. Older sister wanted to share her food. In some way, shape, or form, she would end up getting ahold of it accidently, and then would go "down" for about 3 weeks until her intestines healed up. Just wasnt worth it. Now I make and buy things that everyone can enjoy the best we can. The frustration with playing the "both worlds" game in our house just made me crazier than a bed-bug, and wasn't worth the nervous energy and devastation when accidents happened. We have just accepted it as our lot and decided to make/find the yummiest things possible. More expensive yes, worth the nerves? Definitely.
  4. Most people i have found have a quick growth catch up time of a few months up to about a year. We have been gluten free for a year, minus 6 months in there where we had accidents that set us back for those months. So no accidents for 6 months. We had an initial growth spurtand my daughter (who is almost 3) at the beginning and went from 16 pounds to 20 pounds in this past year. So she has gained 4 pounds. Butshe has stayed at that 20 pounds for 6 months. I realize children get spurts and have growth lulls, but know how stressing this can be. She is not growing much in height though her brain and abilities are perfectly fine, and she is bright and imho beautiful. I was like this when I was little (i'm celiac too) but she is just SO tiny. She is also dairy and egg free and pretty m uch soy free because we can't find uncontaminated soybeans. Trying to get some nuts and protein into her, but she doesnt digest them well. Trying digestive enaymes too. My question: any experiences of children with slow weight gain (success stories!) , tiny children, etc would be soo appreciated. I stress over this a lot. I dont want to be a stress mess or neglectful either, but i have never had much support from doctors. They have always been ignorant and condescending, unfortunately. Where are the TINY kids???
  5. Hi, We had the same problem - weight loss staring at 9 months, and 18 pounds at 20 months. We didn't do any testing before putting her on the gluten free diet because I didn't even know much about it when I took her off gluten. And I didn't want to wait one more day before working on a possible solution. We could see major changes in 3 weeks that I never bothered with testing after the results in diet alone were so conclusive. She has not gained too much weight, but she has been glutened several times in the last 6 months and every time it has set her back for a whole month! She will shrivel up and lose all the fat and weight she gained in between glutening. It was very disheartening. However, just recently she is going "up" again and getting a layer of fat back on her body and her face is filling out again. She is not tipping the scales too much, but I can see improvements in so many other things, that I believe if she is getting healthy, eventually she will pack the weight on. We are dairy free so we don't have a high fatty diet that might pack weight on her like it would other children. Some children, I have heard, gain several pounds in a month. Others take up to a year before they see any change in weight. Weight can depend on bowel movements, water intake, activity level (sweating on a hot day can make you lose a pound or two!), etc. so weight (even for a little one) can fluctuate several times during the day! I would have done blood testing maybe, but I'm just not into biopsies unless absolutely neccessary. If I were you, if it is not a life-and-death emergency, give the gluten-free diet a try for at least a month. Also, something that REALLY helped our daughter was fresh papaya. I have heard it digests wheat gluten. When we gave it to my daugheter (even in spite of cross contamination issues), she had very positive results in healing, gaining the fat layer back, and filling out.
  6. Offers Of Food

    Oh wow - be glad she asked! I had a friend hand over a bread roll to my child WITHOUT asking. This will put us back for a month! I think I've said something along the lines of "Thank you, but unfortunately she is VERY sensitive to certain food ingredients and we have to be sooooo careful with her." Most people won't sit and argue with you if they think your child will get sick because of them handing over food - especially in front of you. If they inquire further, and I feel like it, sometimes I will elaborate on more of our story, but that will usually suffice. If I add anything, it is gently but definitely "this is the deal, these are the facts". We've had too much at stake and too much heartache over this for her to be intentionally glutened or allowed to cheat.
  7. well we have a super super sensitive child and if we could just keep her from getting glutened, she might gain a little! i've played the weight game constantly - on the scale - to give myself peace of mind but it did the opposite, since one day she would be 19 pounds and other times 17. Weight can greatly fluctuate depending on bowel movements, fluid intake, activity level etc. On a hot day, if he is sweating, it is normal to lose a pound in sweat! So i would suggest you look at other things - more body fat growing, inches, clothing sizes, shoes, etc. Much more reliable as they don't fluctuate from day to day. My 2 year old can easily lose 1 1/2 to 3 pounds in a single gluten incident. Since her intestines shut down and absorb nothing (for about 3-4 weeks until they heal enough!!) her muscles and fat will literally wither off of her in a few days, as her body is living off her fat and muscle stores (since she can't absorb anything through food). Considering she is only 18-19 pounds, 3 pounds is significant! Unfortunately there is nothing you can do to force the pounds on and MAKE them STICK, but I keep a loose log to jot down notes of the victories we have (one more shoe size, etc) to remind and encourage me when she gets glutened, that, yes, this will pass, and yes she will improve again. If you work towards healthy foods and lots of exercise in the sunshine and fresh air, you will make him healthy to where his body will put the fat on in the amount it needs. Remember that "healthy" is what you are striving for, and not necessarily weight. Weight depends on genetics, body mass (muscle vs. fat), etc, so take it with a little grain of salt as well. (Having said that, I know the panic of the weight issue!) We do baked or sweet potatoes with lots of olive oil and nut milk mashed in, and banana/nut/date/avocado smoothies to get some high calorie carbs and fats into her.
  8. "Super Sensitive" Celiacs.....

    Well I would have been one of those people who would think "There's no way it can be that serious" if I hadn't gone through it with my daughter. It is INSANELY ridiculous. And to find out where she has got glutened is really hard since we are so careful It's like....there is some invisible boogey-man out there that attacks and we never know it - how, when, or where ......all we see are the symptoms and think "OH NO!!! NOT AGAIN!!!" HOW DO YOU LIVE IN THIS WORLD? I'm getting more and more nuts over this, realizing she is more sensitive than I ever dreamed, and like, NOTHING is safe! Forget grains.....NOTHING is safe. Sorry. just venting. In this by myself.
  9. Okay, so i know that certain spices (onion, garlic, etc) are are mixed with flour to keep them from sticking together, but do they do this with tumeric too? Or would it have gluten from c/c? I feel like there is nothing left for us to eat, simply because she is SO sensitive to the slightest thing. Like, how do people even live like this? Thank you for the website - that's awesome. I think I will get a few to test some grains so we can get something. We are off dairy and soy too, so like the only thing she eats that can put weight on her is baked potatoes with lots of olive oil and nuts, which, who knows! Could be c/c'd. By the way, I've heard that papaya can help digest the gluten. Not that I would feed my child gluten and then papaya with it to "cancel out" the gluten, but it has seemed to help her a lot. When we took her off gluten we started feeding her lots of papaya at that time (just for digestion...didn't know that it may help the gluten issue). Come to find out, she was still being glutened form Rice Dream and Quaker Rice Cakes, which will give her terrible reactions now, but I'm thinking the papaya may have helped neutralize it back then because we were seeing improvements in spite of the gluten. Wow, what a life.
  10. Thanks for all the posts. I am having a hard time finding out how my daughter keeps getting glutened, and this was the only possible thing I could think of when I came across it. The whole gluten issue for us has been a total nightmare of ups and downs. I've dealt with chronic health problems my whole life (most likely related to celiac from malnutrition) but this whole "avoid gluten" issue has totally floored me because of my daughter's sensitivity level and her age (2). I've felt like it is trying to live in this world and avoid plastic....totally impossible. Glad to know we don't have to live COMPLETELY isolated in our own bubble! :-)
  11. WOW!! This is awesome information! I feel like we have some kind of hope now! I have not been able to find the source of my daughter's glutenings, but I just read a post about the playground where goldfish-contaminated hands get all over the playground equipment. Sheesh.......How do you even LIVE in this world and let kids be kids with celiac issues? It's like trying to live in this world without plastic! Good luck! It is nice to know that somehow, even though my Little has to avoid so many "normal" things, that she can at least eat at home in peace without getting sick. Where do you get the at home testers? That would be a lifesaver around here!
  12. Looking for a place to buy gluten-free grains in bulk that are 100% NOT cross contaminated. Does anybody know of a place? I can't even trust the expensive little bags in the health food store that say gluten free because of the deceptive labeling. Besides the fact that we will go broke.... But my daughter is so sensitive to cross contamination that the slightest speck of dust will give her reactions for a month, and it takes a few months for her to gain her weight back. She is only 2 and we can take NO chances. Where do dedicated gluten-free facilities buy THEIR grains? 4 out of 5 people in our family have gluten issues, so we need to order in large amounts, but my daughter is on her death bed practically with CC so there is no sense in buying bulk that is "potentially CC'd". Any help would be a lifesaver right now!
  13. My first child showed no symptoms. My second child was devastated by celiac (failure to thrive type thing) and was REALLY bad off. We discovered the gluten connection and went gluten-free. She got better. We put the first child on gluten free as well (we all are gluten-free now) to make meal prep easier. Surprisingly, her belly slimmed down. We had not thought that she had any problem - she was a child who LOVES food, and we just thought she ate a lot so her belly would look large. Not so. It was big because of a gluten reaction. I would never have guessed. Now I have a 2 month old son, who I will raise gluten free so we don't have to go through "the same hell" that we have with daughter #2. Our reasons are: There is a high chance he will be sensitive in some way,shape,or form, and its not worth chancing his health if he is. He is not going to be unhealthy by having a gluten-free diet. My second daughter is SO sensitive to gluten (it DEVASTATES her to NOTHING and a million other symptoms) that I don't want gluten in the house at all. A bread CRUMB or speck of flour dust will shut her intestines down for about 3 weeks, and during that time she becomes a skeleton, living off her own fat and muscle stores. It is pitiful. It's not worth having a gluten accident in the house. We have three people already gluten free (my husband eats gluten out sometimes, or will grab a slice of bread from the freezer to put in his lunchbox) so it is a matter of making "special food" for my new son to EAT gluten! Why go to THAT trouble? loL!
  14. I just found out that wheat gluten is used to coat fruits and vegetables. We are vegetarian and blow through boxes and boxes of produce. Does this mean my child can never eat strawberries or cherries (or the like) because I can't peel them?? Has anyone heard of sensitivities to eating fruits and veggies without peeling them? I know its a good idea and all, but with the way we go through produce, it's not even feasible. I have 5 people to cook for, and can't peel everything that passes through the house! On the other hand, my child is EXTREMELY sensitive to even flour dust or a crumb of bread and her gluten reactions are taking her DOWN.
  15. Let me ask this: If the biopsy turns out positive, what will you do differently? If the biopsy turns out negative, what will you do differently? Common sense has to play its part in any decision. To counteract an above poster, to blindly trust somebody else, dr or otherwise, without factoring in anything else, is always DANGEROUS. We turned down a biospsy for our daughter, who had responded AMAZINGLY to the diet change. The difference was night and day. I do not see a reason to take the risks associated with a biopsy (and there always are) just so I can give her problem a "name" and have the "Dr.'s blessing" with it, unless there is a real reason to do so. Especially for a little child. Hospitals, tubes, etc are very scary for children, and to put them through something uncomfortable, scary, traumatic in some cases, without having a very good reason is irresponsible in my eyes. Hope not to offend anyone who has had a biopsy. The main point here is that there is no good reason is being given. The brutality of the medical system is relentless, and as was stated before, it comes down to one more thing: SOMEBODY gets paid big bucks for it.