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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 FREE Celiac.com 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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Birthday Party's Are Hard For Mom
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SofiEmiMom    0

Hi everyone. I wanted to seek some advice. My just turned 5 year old has been invited to several birthday parties lately. I have such a hard time with it. She quietly asks me if she could please have some of the birthday cake, knowing she can't, but wants it so badly. I always bring her a cupcake but went so far recently to make a 'mini' cake decorated and everything. It's just not the same as the wonderful birthday cake at the party. One Mom at one party said to me, "Aw, look at her. I feel so bad for her". Which made me want to cry but I responded, "Don't feel sorry for her. She has her health!" But secretly dying inside. I actually have a celiac bakery near our house and got a wonderful birthday cake made for my daughters own party. A lot of the kids could tell it was a little different and were commenting on it. It makes me feel bad for my daughter. It makes it even more difficult because at moments like that I question the entire diet. My children and myself were diagnosed by Enterolab in Sept 2004 with positive test results. My girls pediatrician supports the diagnosis since she saw how sick my kids were and improvement on the diet. Although the pediatrician has made comments about how we have no proof. However, the pediatric gastroenterologist I took my kids too (a reported 'premier' celiac doctor in our area) will not support the celiac diagnosis. He said that he clinically cannot and will not diagnose a child with celiac unless there is a positive biopsy. Only one of my daughters had the biopsy, and it came back negative. He told me they didn't need to be on a gluten free diet. I guess I just need some opinions of other parents and any adults who were diagnosed as children. I've really been struggling with this lately. Any different ideas for getting through the birthday parties?

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You can only do what you have been doing, taking their own food and having fun. Your children are lucky enough to be diagnosed so early that they won't have to suffer years of pain or miss old ways of life. Luckily, you will only have some wawing moments here and there but it is harder when you're little and can't quite understand it all.

Also, if the diet works I can't see why any doctor would say to get off of it because of a negitive test. Ridiculous.

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anerissara    2

We're in the same boat...I took my kids off gluten because both have symptoms of celiac's although they are not dx'd officially. I do not want them to have to go through tests and spend all that time trying to pinpoint what I am almost certain is related to the wheat, and it certainly can't hurt them to be gluten-free. Plus, having wheat around my house just isn't good for *me*, I don't want to handle all that wheat and I also don't want to cook 2 meals every time we eat. It makes sense to me to try a gluten-free diet for them and if it helps, then they'll be able to avoid the years that I had of not knowing what was wrong and being sick...and not even realizing that they *could* feel better.

Birthday parties are the hardest, though...I agree. That and pizza parties. And, sack lunches are a pain for me to pack (they get way better food this way, though, so they haven't been complaining!) I do the same thing with the gluten-free cupcakes when other kids have birthdays, although the kids usually perfer to just avoid the cake rather than have a different dessert from everyone else. Most of the time the other kids really don't notice, or if they do they just note that "Oh, that's too bad" and move on to more interesting topics. We will often go to ice cream afterwards so they feel like they've had their quota of junk food (Baskin Robins, bless them, lists allergins that each flavor contains on ever container...and many of the flavors are gluten-free!).

As far as their own birthdays go, there are a couple of other options that do taste like "real cake". I posted a carrot cake recipe reciently that really does taste normal, I know that for birthdays carrot cake is kind of wierd but it's yummy and you can do things with the frosting to make it festive (gluten-free grahmn cracker crumbs make good "dirt", we made a moon cake baked in a glass bowl, frosted, and covered with the crumbs--topped with some plastic astranaughts.) Ice cream cakes are another good option (with gluten-free icecream, made in one of those pans that releases with a latch once it's frozen). You can do interesting layers with this, and choose either to bake a thin layer of gluten-free cake on the bottem (people don't notice the difference if it's topped with lots of icecream and if it's frozen) or not. The ice cream part is so easy...just let the ice cream get very soft, pack it on top of the cake (or directly into the pan) and then freeze! You can also top it with melted chocolate, which makes a candy coat, and then decorate with frosting or other cake decorations. They're really good!

Anyway, you're not alone and I feel the same way sometimes too. But if your kids seem to be doing better on the gluten-free diet and you need to be on it too, there's no reason I can see to second guess yourself! Usually, a gluten-free diet is actually much *healthier* than a regular kids diet. Think of all the fast and processed foods they are skipping (have you seen what's in a chicken nugget? And mac-and-cheese in a box isn't much better...my kids used to live on that stuff!), instead they are getting home-made, whole and healthy foods. They are actually getting better nutrition then most of their peers, which will help them in all sorts of ways. A few odd moments at birthday parties is a small price to pay for being healthy and happy! :P

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SofiEmiMom    0

We're casein free too, so that makes it all the more difficult. At a typical birthday party there is pizza, ice cream and cake. My children can't eat one single thing. Sigh. I feel like a catering service coming to these parties with my big 'ol bag of food. Lol.

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anerissara    2
:wacko: Oh, man! That must really be tough. Can you have Mocha Mix ice cream? I used to be lacotse intolerent (can have it now as long as I'm gluten-free) but I don't remember if it had casin in it. Ugh, my heart goes out to you. gluten-free is hard enough, I'm sure it must be really difficult to come up with gluten-free, casin free meals. Still (and especially in light of the casin), I hope you'll take a moment to congratulate yourself on how hard you work for the health of your kiddos. They are lucky to have a mommy who takes such good care of them!

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Merika    0

Hi,

well, my ds is just 3 yrs old, so it's not quite the same, but have you thought of doing something entirely different than cake? For his birthday last week we had rice crispie treats (made with gluten-free rice crispies). They taste the same as regular rice crispie treats and everyone at the party was thrilled with them.

We also bring these to others' parties, though I've been known to add food coloring to tapioca pudding to make something "blue" just like the cake. Ds can eat ice cream, but usually has instead rice dream (which may be casein free?) "ice cream".

And my last thought as for why your girls may be longing for the food at parties - are they picking up your feelings? Do you feel bad for them? Do you wish they could eat it? (I'm sure at some level, yes, any parent does.) But I think if you have a very practical, no-drama, this-is-how-we-do-things-for-us attitude your girls may instead just be confident of who they are and what they can eat. Try not to let them feel they're missing out, just we-only-eat-gluten-free, yk? And with you doing it too, it will be easier because they'll have a roll model.

Also, if your doc has made you feel ambivalent about whether they really need to stay off gluten, they could be picking up on that too. Kids are very perceptive :)

Good luck. I've got it easy still with a 3 yr old, so all my advice may be useless to you :)

Merika

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ianm    6

My son (age 9) has a friend with a very severe case of celiac disease and he has to bring his own cake and food to parties. The kids don't give it a second thought and are suprisingly supportive of this boy's condition. It is the occaisional idiot parent that causes the problem. The kids will yell at the doofus adult that this boy can't eat wheat and it will make him very sick. One time I had to intervene and explained to the imbecile adult that I have the same problem only to be met with a blank stare of stupidity. It's not the kids you need to worry about, it is the ones with ignorant parents.

Ianm

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SofiEmiMom    0

Thank you everyone. And yes, Merika, you are right on all accounts and I appreciate your advice. I do long for my children to be 'normal' and I've realized that I need to change my way of thinking. I just don't know how to do that. I never talk negatively at all around my children, it's just how I feel inside and I realize that children pick up on that. But as mentioned, I don't know how to change those feelings. Your post made me laugh Ianm! You are so right about the idiot parents. I have many stories about that. It is always the parents and not the kids that say the worst things. Thanks again everyone: ).

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anerissara    2

:D LOL about the "Imbecile Adults". I know what you mean! My favorite is the adult who tries to tell you "Oh, but you can eat (fill in the blank with a gluten-containing substitute for whatever gluten-containing snack the kid is having to turn down at the moment) because it's not wheat" or "Surely whatever small amount of wheat that could be in that food starch won't cause a problem, can't he have it just this once?" People will actually sometimes do that in front of you, right there with the offending snack in hand. UGH! :angry:

Your kids *are* normal, they just can't eat wheat! I should talk, though, I have the same issues feeling guilty about the gluten-free diet with my kids. I think if they'd have been so sick when we started this that it was apparent that the diet saved their lives, it would be a different story...but (luckily) they were just skinny kids with lots of rashes, both of which were not at the time serious looking problems. (((hugs))) to you, I know how you feel! :unsure:

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ianm    6

I know someone with a fatal allergy to peanuts and people are always saying "Oh just a little won't hurt." He will respond "No it won't hurt because I can't feel pain if I'm dead." Even after that some people still just don't get it.

It is better that your kids find out they have celiac disease at 3 and 6 instead of 36 like I did. This disease does have a silver lining. Your kids will be forced to take better care of themselves right from the start. How is that a bad thing? If they don

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cdford    2

gluten-free brownies and ice cream are a good substitute for cake. I take them even to church functions since there are several of us at ours. My daughter had a tough time transitioning to the gluten-free diet when she was eleven. She just did not want to deal with it at all. Once she took a gluten-free pizza to a pizza party and the other kids wanted to try it. To her shock and surprise, it was a hit. Most of them had never had a homemade pizza of any kind, gluten-free or not.

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Guest Zmom   
Guest Zmom

My son is 4 and gets invites to his pre-school friends birthday parties but I don't think either one of us is ready for this minefield. -Mostly me. He is actually very good with saying no to gluten.Even asks his granparents to wash their hands after eating.(they won't).

For his birthday I gave up on the idea of a cake and got some guten -free cookies (enjoylife foods) and took the focus away from food...and on to the most important thing -presents. :D

Most MDs don't know about the lastest swab tests for the celiac gene only a few labs offer it. www.enterolab.com is the only lab that does a stool test for celiacs and can identify damage to the small intestine. its actually more sensitve than blood tests and some studies indicate more than surgury.

My son's blood work came back negative. But I took him off gluten last august anyway. Finally got the gene /stool test done this month.Both were positive.I think the gene test is $129. maybe start with that and then if it comes back positve you have something to show your Dr.

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