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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? - 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

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Hey. I'm Mandy, and I'm almost 15. I need to share what's been bothering me with some people who might understand.

I've been gluten free all my life, I was diagnosed with Celiac when I was 22 months old. I'm the only gluten free person in my family, out of my friends, and there is only a couple of people I really know who are gluten free. It's lonely, and gotten more lonely. My family understands, especially my mom, who's always been there, but they've never really had to deal with it like I have. My friends are understanding sometimes, but other times poke fun at my food for being crumbly, looking or smelling weird, or having a weird taste. Its harsh and they don't understand that it hurts me a lot. I only have one friend who really understands, and so does her family. Its nice having that. I have a lot of problems going out to eat especially with friends because sometimes I have worries about reliability of Gluten Free menus, or cross contamination, or being judged by my friends for over exaggerating, even though I know its necessary.

Also, I started getting a lot more G/I symptoms in the past 3 years. A couple months ago I had a reaction with hives at school to an allergen that we're still currently testing for. I've been dealing with some other emotional stuff that has really increased my worries about accidental Gluten intake, and getting more hives or G/I issues. It scares me that there could be something that I don't know is hurting me, and sometimes G/I issues are unpredictable. They happen when I'm away from home without my family, and I even held up 5 church retreat buses because of G/I issues. Point, I just really feel brought down sometimes by my intolerances, physically and emotionally.

I'm sorry for the long rant! The last thing I want is to complain, but my mom suggested that I get this off of my chest to some people that might know what I'm saying. :)  I wanted to hear stories of how other people have struggled recently, or not recently. I'd love to talk to some people who know what I'm saying.

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Hey! I'm Reba. I'm 20 and I understand everything!! I've been eating gluten for almost 2 years now. Just like you my mom understands the most and then probably my sister. Some of my friends are accepting and they are willing to learn and try it. Eating out is the hardest because it is impossible where I live to find a restaurant to understand our allergy.

My biggest struggle lately. Its been a month now and I helped a friend out and when they picked me I was in the car with a sheet cake, a 3 tier cake, and over 200 rolls. I always couldn't be around it and they didn't think anything of it and I was around it for 2 days and they didn't believe me it was that bad. Like I said its a month later and I'm still struggling with it because I still have a headache, I'm still getting sick, and my stomach still hurts.

I'm always willing to talk and listen. :)

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Hey guys! My name is Casey and I am 17 years old and have been diagnosed with celiacs for two months now but I've been dealing with the symptoms all my life. I totally get how frustrating it is when people don't understand - even with friends who I love and trust, I hate getting the pitiful looks and, "Wow that really sucks!" after I explain my diet.

My biggest challenge right now is preparing for gluten free eating in college. Luckily mine seems to have a pretty accommodating kitchen staff but my dorm doesn't have a kitchen and I will be sharing a minifridge with my Roomate, who eats gluten, and I don't know if the contamination will affect me or not.

I'm definitely scoping for some gluten free buddies so I'd love to talk more. Hang in there :)

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hey! I'm 21, and I've been gluten free for a year now, but still have trouble with it a lot. i get reactions pretty often still (somehow) so I'm still learning! I think as you get older your friends start to understand more, so i usually don't feel too weird having to be pretty particular about what I eat. but, a lot of times, even if I order a gluten free pizza or something, I still get glutened - I think a lot of restaurants suck at changing their gloves/dealing with cross contamination and stuff =\

 

I'm also looking for gluten free buddies, mostly because i still don't know a lot about the disease and why exactly I react sometimes! I don't have gi symptoms, I just get: sore throat, nausea, and wicked fatigue. which doesn't sound that bad, but sometimes I barely have enough energy to walk. which sucks, cause I like to be active/play sports and stuff haha

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I'm 21 and was diagnosed 4 years ago.  It definitely was a struggle at first but here's a few tips that have really helped. 

 

I found the best ways of coping with being around friends and family is being ready. 

 

It's a hassel, but preparing meals ahead of time, or having quick go to snacks ahead of time makes social situations so much easier so you never have to worry about being without food.  I also bring a lunch bag with food ready in it, or sometimes just pack some fruit and protein bars (homemade!) in my purse (having a big purse really helps).  If I know that people are going to be sitting down and having dinner (like at Christmas time) I also bring a full meal with appetizers and a dessert so I don't feel left out.  I've even talked to staff at restaurants and they've been understanding if I eat my own meal there while my friends order. 

 

I've also found that as I got older it was easier socially.  A lot of my friends just can't afford to go out to eat all the time, so instead we go to the grocery store together.  Another thing with getting older is a lot of my friends want to be more health conscious, so instead of them saying "Oh that sucks all the time", now instead I share some really cool super healthy gluten free snacks which taste great and they are really interested.  The hardest thing is explaining it to people who are new to it, but whenever people try to make a gluten free diet sound like a bad thing I usually just jokingly tell them that it doesn't bother me that I'll still have a great body when I'm 50 from eating so well.  It helps to just make light of the situation. 

 

I also tend to host most sleepovers or get togethers to make it easier for me to trust the food I'm eating and if anyone offers I tell people to bring some gluten free snacks, but to make sure they have the gluten free labelling on it.  If people insist on making food I usually ask them to run recipe ideas by me, or I usually just don't eat them because the slightest-cross contamination makes me sick.  It's also fun to have baking parties with friends.  You get to let them in to your world and make some awesome food that everyone can eat. 

 

It is unfortunate to have to deal with celiacs as a teenager when all your friends are so care-free, but honestly, especially for those who are young and new to the diet, it gets way easier socially, mentally and physically.  That's not to say you may not struggle here and there, but to me I've just embraced is as my lifestyle and it's just become second nature to me. 

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