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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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Guest dlf1021

I am 18 and just received my diagnosis yesterday. I found it rather disheartening that the doctor didn't know what celiac disease was when I mentioned it to him and had to go and look it up (I find my self wondering if he ordered the correct test or not). Very obviously, I've got about a million and three questions about celiac disease and all the fun stuff that comes along with being gluten free (especially with the prospect of college and living in the dorms looming in the not too distant future).

Still, with all of the questions and apprehension of having this whole thing looming over my head for the rest of my life, I find myself getting excited about the idea that after being plagued with stomach and intestinal problems for as long as I can remember (we're talking as far back as kindergarten), there may finally be an answer...I might have the chance to be "normal" and be able to go out with friends and go on family vacation without having to worry the entire time about whether or not today is the day that I get violently ill again.

Now that I've told the story, on with the questions...any help on this stuff would be awesome

When you were diagnosed, did you end up having a biopsy as well? I'm trying to figure if it would be worthwhile to have it done just so that I can have some form of 'second opinion'

Has anyone else had problems with their parents understanding celiac disease? Neither of mine have done any research, yet when I tell them that gluten free means gluten free, they argue that I can cheat and be fine. Yeah, they aren't the ones who will be sick tomorrow.

For those of you in college that lived in dorms/ate on campus, was your school cooperative with meal planning and providing gluten-free food?

I could go on for days with the questions, but I'll stop the bombardment with that.

Thank you! :D

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Hello. I too am 18. I found out about my celiac disease a few weeks before graduating high school in 2003. I am in college now but am still living at home because that was the best thing for me now and the school I wanted to go to is luckily 11 miles away. I know there are people on here who have helped me with all their advice and suggestions about living on campus (in this secion you can find what they siad and it's so helpful). I did not have a biopsy done. The gluten free diet works for me and I had been suffering since kindergarten, too. My Mom s very understanding and is always doing research for me about my disease and some good friends, too. My Dad doesn't seem to really think about it or anything. Sometimes he forgets and slips up by offering me a cookie or asking if he should make me a sandwich when he is eating one. It hurts me a lot when he forgets but that's just the way he is. The only really bad thing I have had happen to me is anxiety. After being sick 17 years everyday and the it "suddenlY" stop freaked me out.

Damn, I have to go so I will probably respond back to you. I am going to the health food stores and meeting people just after I drop my brother off somewhere and it's past time to go! I'm sorry. Feel free to IM me sometime MySuicidalTurtle on AIM. KMC3050@hotmail.com on MSN.

Kristina

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Hi! I am 20 and I was just diagnosed with celiac disease in September. I just had a blood test to see if I had celiac disease and have been on the gluten free diet for about 4 months and all seems to be going well! (of course there are still really bad days, but that's to be expected I guess!) Anyway, to answer some of your questions... first about the parents! In the beginning I was extremely frustrated because I felt like no one understood what I was going through. And worse than that, I felt like they didn't want to do anything to educate themselves about celiac disease either. That's probably the stage that you are at right now! But, as the months go on I have found that my parents are starting to help me out with the diet and are thoroughly interested in celiac disease in general. Of course, there are little things here and there that happen... like asking if I want pizza or something, but overall I feel that they are understanding that this is something that is chronic and the best way to deal with it is to face it head on! My parents used to tell me that it was alright if I "cheated" a little, but I just made sure to tell them that even if I don't get a reaction it is still hurting my intestines! Maybe if you explain that your body needs to heal from the inside out and that even if for some reason you don't react to a food with gluten in it, it doesn't mean that it is not hurting you, they will understand? In the very beginning I thought that I would be alright if I ate something I wasn't supposed to here and there, but then I found out that if you don't stay true to the gluten-free diet that celiac disease can turn into cancer... that freaked me out and I haven't cheated since!

Addressing the whole school and food issue... I go to the University of Iowa and I live in an apartment. I was not diagnosed with celiac disease when I was a freshman so I never had to deal with the dorm food situation. But, I am sure that the school that you choose will be willing to work with you to devise a meal plan! If there is a problem, there is always the salad bar! It actually might be easier to look into getting an apartment so that you could cook your own food? (even though I understand that living in the dorms is a memorable experience!) I don't know if you have any other complications that go along with celiac disease, but I am also lactose intollerant and hypoglycemic along with being allergic to a million other foods, so it would have been pretty hard for me to live in the doorms while having celiac disease. But, hopefully you just have celiac disease! I don't know what schools you are looking at, but I would suggest finding out if a natural foods market in near by! I unfortunately have to go home to Chicago to get most of my food, but I have to go home almost every other weekend for doctor's appointments anyways, so I am used to the drive! Although, you could always order online and some grocery stores are starting to stock some essential gluten-free foods! (My favorite little snack is the Envirokidz granola bars!) Well, I have to run, but I hope that this helped you a little bit!

-Laur-

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My older brother was diagnosed about 5 years ago when he was in college. He was so sick that he had to drop out. The doctors didn't know what was wrong with him. The thought he had cancer, Rheumatoid Arthritis, IBS, everything BUT celiac disease. He ended up being hospitalized because his celiac disease was so bad. While he was in college he did everything he could do to "bulk up". He was always skinny and so he tried eating more pasta and stuff to gain weight. He was doing everything he shouldn't have been doing basically. Once he was dignosed, my mom got really depressed. She blamed herself for him being sick.

The really funny thing about it is that both he and I have celiac disease and our grandmother had it too....I mean really, you'd think doctors would look for family connections first!

Anyway, when I was a junior in college, I dropped 30 pounds in one semester. I was living at home and commuting to school as well as working nights as a bartender. I can't tell you how many times my mom freaked out at me thinking I was either bulimic or on drugs. I couldn't figure out why I was losing weight but I wasn't making the connection between that and the other symptoms I was having. It was my brother who finally put two and two together and told me to go see someone about it. Sure enough, I have Sprue also.

The point I want to make is that while you don't see it all the time, your parents go through a lot with you being diagnosed too. Its a lifestyle change for everyone and a lot of people are in denial at first. Just remember that they're people too. Deep down they want you to be happy and healthy but to get there they first have to admit that as your parent, they missed something big that was going on with your life. They might feel like they failed as parents and so they're denying that anything is wrong with you. They'll get over it.

As cheesy as it sounds, get them involved. Have baking days on the weekend and make gluten-free stuff with your mom. Get her involved in a way that makes her think she's getting involved in your life. Be sneaky about it. You can educate them and they won't even realize it!

-Steph

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Im 15 and to tell you the truth i dont know if i have celiac disease. I have never gone to the doctor to get it diognosed. When i was really little my parents would feed me things with like flour and wheat in it and i would instantly break out on my stomach. So they just didnt stoped feeding me grains and dariy products. When i got older it was hard at lunch because i would have to ask the lunch lady for a chicken patty with out the bun and i was kinda embarrassing. That is when i said just screw it im going to eat the bun 'n all. But at home i wouldnt eat flours and stuff like that. After eating the buns at school i would get rashes on my arms. A few years ago i stopped getting rashes on my arms and i thought that i finally out grew my "what ever i had" and i was so excited but that was at the same time that my knees started to hurt. I was/am at an age where i am still growing and i thought it was growing pains. I was also playing basketball and i thought it was from that. But i still stayed on my flour/wheat/ect. diet cuz of my mom but at school i would totally cheat and at home when no one was home. What they dont know wont hurt them right? Well, a week ago my mom was reading the readers digest and it had the 10 most missed diseases and it had celiac disease in it. My mom had heard bout it before but when she went to go look into it she forgot the name. So this time she remembered the name and we looked it up on line. When i read the symtoms it said rashes, and PAINS IN THE JOINTS! i was like thats just great. i was sorta disapointed but i guess it didnt really change me. But after reading the artical i went on this site and it said i could get cancer and that really freaked me out and now i am kinda afraid to eat flour ect now. Like i said earlyer i dont know if i have celiac disease but i really think i do. The one thing that i read that really got me wondering was that on the home page of celiac.com it says that it is genetic. How did i get it when my parents dont have it or any of my relitives? Do you think i should go to the doctor and get it dignosed? Or can i just live my life like i have but alot more carfully? Well if you could someone help! This is really cool having a message board where all the peeps in it have some kinda experiance with some of the stuff that i have gone through. Thanks for reading my story!

Julianne

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Guest rejacobs

I am 20 years old and I am a sophomore in college. I was diagnosed with celiac disease when I was 18 months old, so I have lived with this my whole life. Let me tell you, its not the end of the world. I am able to go out in college and have a good time, I still drink (just not beer). My friends are very understanding and usually when they think its cool. So many people now are trying to eat less bread anyways because of diets. I have been able to live the normal teenage life. When I was a senior in highschool I still went on a spring break trip with all of my friends, I still go out to restaurants.

I really dont know what else to say, but I just wanted to let anyone know that if they have questions to please ask away. Especially to the people who are nervous about going to college and not being able to eat.

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Only 13 years old, but I, too have had stomach problems for quite a while. I can relate to being worried about when I would be sick again. Eventually, I found that it came in a pattern, about once every two weeks. That made it worse, knowing that as the 14 days came around I'd probably be sick soon. Don't have much advice to offer; I'm new to Celiac -- just diagnosed.

My doctor strongly recommended a biopsy. I had the scope. It's not too big a deal, once they put you out. Once you wake up, you won't even have too bad a sore throat. The next day it's a little worse, but again, not too bad. If you eventually have one, I would recommend being put out entirely so you don't know what's going on. Good luck.

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A biopsy is not a "second opinion"

In fact, it is the only accurate way to diagnose celiac! Just because the blood tests are positive, does not mean that you have it (although it is unlikely that you do not)

I wouldn't want to go through life on this diet and not know for sure if I had celiac!

With a proper diagnosis, you are also more likely to take the diet seriously, and not "cheat", which can be extremely harmful.

The biopsy isn't really a big deal, you will be asleep during the procedure and it only takes about 10 minutes. You can usually leave the hospital in about an hour or so! I was able to have a big lunch after it! The only thing was I was a little groggy from the anesthesia and my chest was a little sore. I highly recommend you have the biopsy to find our for sure! Good Luck!

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I'm almost twenty-two and have been on this diet since I was seventeen. But When I was a little kid I had an allergy to wheat, which my mom thought I had outgrown. I never really needed any of the tests because this is the only possiblity, even my doctor said that because I only react with all my digestive splendor when I've gotten a hidden gluten. To be honest, I've become a quasi-commuter in college because I have to go home every couple of weeks to get more food. Without a kitchen in the dorms and a food service staff who just doesn't get it, my microwave has become my best friend(ha). Okay, so I absolutely hate it and I can't wait to graduate, but I've made it through college. If it makes you feel any better, everybody is scared with this at first. To be honest, I wouldn't have made it through college or high school without my mom. I try not to cheat because I hate the way I feel when I even get a hidden gluten. In the long run you'll feel ten times better than when you weren't gluten-free. But my relatives still are sometimes clueless when I'm visiting. Oh well, that's family. Good luck with college.

Ravyn

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I'm a mother and found out last year I have celiac disease. My stomach problems only started two years ago in my late 40's. I have had my two teenagers tested (they have no symptoms) and they both came up positive.

As this is genetic, and some people do not have symptoms but damage is being done, I would highly recommend your parents get tested or try out the gluten free diet for a few weeks and see if they notice any difference. Not everyone gets the stomach symptoms, or any obvious symptoms.

If you check out the www.enterolab.com site, "testimonials" you can see the wide range of symptoms for those that get them.

I've read that many people are being diagnosed in their 50,60 and 70's and unfortunately by then you often have developed other auto immune disease.

Good luck with your healthy new diets, it will become second nature to you and your young enough to avoid all the other things that people get who stay on the gluten diet. Do point out to your parents that one or both may have this, it is genetic. :D

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I'm 19 and was diagnosed wiith celiac disease almost 2 years ago. I'm heading into my sophmore year of college. I chose to go away to college in Idaho (i'm from kansas) and found a cooking dorm to live in. That was the best solution for me, because then I didn't have to worry about counting on the Food Service on campus to provide me with gluten-free items. Over all, I don't even bother trying to get ahold of gluten-free flour, breads, the like; i simply just eat the things that I can have, and avoid the rest. Now whether that is the best solution, I don't know, but I've found that it is a lot easier for me, and it allows me to be independent .

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