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I'm sure some of you are wondering what the heck Celiac Disease is, and many of the sites out there sugar-coat the disease. Well, we're not going to do that. Teens are old enough to get it straight up… and not in all that medical terminology either! We're here to make it simple to understand… and in our language. Hope this is of some help.

If you have any more questions, then please e-mail them to celiacteens@yahoo.com
What is Celiac Disease?
Okay, so see, we have these villi in our intestines. These villi are small hair-like structures that pass food along your intestines (with the help of mucus), and help your intestines to absorb food into your body. Whenever someone with CD eats gluten, it causes the villi to break down… causing your body to be unable to absorb food and nutrients (and even water!). Celiac Disease (abbreviated CD) is also referred to as Celiac Sprue or Gluten Enteropathy. Enteropathy is a medical term for "disease in your intestine." (Hey, that Medical Terminology class I took in college is paying off!) CD is a chronic (forever) auto-immune disease, which means that your body's immune system responds to breaking down your own tissue, which causes diseases. Since your body reacts negatively to gluten, a person with CD has a gluten-intolerance (not allergy). However, it is possible for someone to have a gluten-intolerance, but not have CD.

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What is gluten?
Gluten is a protein that holds together wheat and other grains. It is found in wheat, oats, barley, rye (and some other less-common grains). The word, gluten, is French, coming from the Latin word for 'glue.' (I also am including some 'more-technical' definitions)

Definition of gluten, from CancerWEB's On-line Medical Dictionary:
The protein of wheat and other grains, which gives to the dough its tough elastic character.

Definitions of gluten, from www.dictionary.com:
1. A mixture of plant proteins occurring in cereal grains (chiefly wheat) used as an adhesive and as a flour substitute.
2. The viscid, tenacious substance, which gives adhesiveness to dough. Gluten is a complex and variable mixture of glutin or gliadin, vegetable fibrin, vegetable casein, oily material, etc., and is a very nutritious element of food. It may be separated from the flour of grain by subjecting this to a current of water, the starch and other soluble matters being thus washed out.
3. A protein substance that remains when starch is removed from cereal grains; gives cohesiveness to dough


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What are the symptoms of Celiac Disease?
Okay, there are tons of symptoms! But then again, some people don't have any symptoms. Since people with CD can't absorb nutrients, our body shuts down in lots of ways. The symptoms vary from person to person. Here are the main ones:

Diarrhea
Constipation
Throwing up
Floating poopy (also known as 'stools')
Lots of gas
Stomach pains
Irritability
Headaches
Swelling
Lactose intolerance (problems with dairy products)
Rash and skin irritation (red bumps called Dermatitis Herpetiformis)
Muscle/bone weakness
Fatigue (just simply tired and weak)
Paleness
Low iron (and other low levels of vitamins and minerals)
Weight loss

I've also heard about a lot of people having other symptoms. Here's a list of maybe the less-common ones:

Fainting (because vitamin and mineral levels are so low)
Low blood sugar (hypoglycemia)
Low thyroid levels (hypothyroidism)


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What type of doctor should I see?
In my experience, family practitioners aren't very familiar with CD because it's pretty rare. I'm not saying that they don't know anything about it, but it might be more beneficial to see a gastroenterologist. Usually what happens is you go to your family doctor, and explain your symptoms. They may choose to do blood work and tests there, and then later refer you to a gastroenterologist if you do, in fact, have CD. A gastroenterologist is a doctor who specializes in diseases and disorders of the stomach and intestines. (Again, that Medical Terminology class is paying off! LOL!)

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How is Celiac Disease diagnosed?
Well, if you go to the doctor, hopefully you won't have boneheads like I've had in the past. But don't you worry; there are good ones out there. I have an awesome one now so I guess she makes up for the bad ones. :) If you think you may have CD, talk to your doctor. First you can do a blood test to check the antibody levels of endomysial, reticulin (IgA), and gliadin (IgG and IgA). In order to get an accurate reading, you need to be eating gluten regularly. If the tests do come up positive for these antibodies, your doctor may want to do a biopsy. First the doctor will do an endoscopy. An endoscopy is where they stick a tube down your throat and into your stomach. On the end of this tube, there is a little camera that lets doctors see inside to see if there's anything wrong. Then they will do a biopsy. During a biopsy, they take out a little piece of the inside of your intestine to examine for damaged (flattened or broken down) villi. They can put you to sleep for this procedure so it won't hurt, but it costs more.

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How the heck did I get this disease?
Celiac Disease is genetic. If one person in your family has it, every 1 out of 10 person will have it (statistically saying). You actually were born with this. You probably had mild (or really crazy) symptoms when you were a baby. Through elementary school, it kinda goes into 'remission' (it goes away for a little while), but then it is brought on again by a traumatic experience, a viral infection, or stress.

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How do you treat Celiac Disease?
The only way to treat CD is being on a 100% gluten-free diet… for life. This means no cereal, bread, pasta, cookies, cake or other foods that contain gluten. (I know the diet's hardcore. I know it's really hard for a teenager or college student to be on this diet, especially when we can't eat pizza, ramen noodles or mac & cheese. But there ARE alternatives out there. There are companies and health food stores who sell pizza, pasta and mac & cheese that are all gluten-free. And I can tell you from personal experience, that you can't taste the difference!) Oh, and unfortunately, there are no prescription drugs yet that we can take. And there is no cure. This is a chronic condition… another way of saying… you'll have it forever. (But still… don't worry. We can survive!)

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Can I cheat in my diet once in a while?
Absolutely NOT! Listen up everyone… CD is a very serious condition. Whenever you eat gluten, it eats away at those tiny villi. It's like a poison to your body. When gluten damages your intestines, your immune system tries to help, but it just can't. If you cheat in your diet, the gluten will continue to eat away at your intestines, and (in time) you could develop anemia (low iron), seizures, osteoporosis or lymphoma. Lymphoma is cancer of the lymph glands, which is a very serious condition. You can die from lymphoma! After you've been on the diet for a year, if you have a little gluten, you may not feel a reaction. You may not get diarrhea and you may not throw up; you may not even get a stomachache! This does not, in any way, mean that you can eat gluten on occasion. Even just a bite of chocolate cake can do damage just as the whole cake would. Even though you can't feel it eating away at you, it's still doing damage. That's just how it works. So try to be strong. I know it's tough to be strong. I'm in the same boat. But believe me, your body will thank you! And this site is here for all the support you need!

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When will my symptoms go away?
My diarrhea and stomach pains went away after a week or two on the gluten-free diet. It really depends on how much damage the gluten has done to your intestines. It will probably take six months to a year for your body to get balanced out and the majority of your symptoms to go away. A big factor is trying to remain healthy while on the diet. Since you are losing nutrients by removing gluten from your diet, it's a good idea to take a vitamin/mineral supplement, but you should talk to your doctor first. Also, your body is struggling to get back to normal. Since there is so much damage to your intestines, your body will need time to re-grow the villi in your intestines (another reason to stay on the gluten-free diet). The best way to get the vitamins and minerals you need is to see a dietician or nutritionist. It's best to find one who is familiar with CD. Be sure to ask when you are making an appointment because this makes a world of difference. You wouldn't want to get a dietician who thinks that just a little time on the gluten-free diet will heal you for life. Being on the gluten-free diet is a life-long commitment, and you need to find a dietician who understands this. Taking care of yourself will put you on your way to a speedy recovery. And the more you take care of yourself, the faster your symptoms will go away.

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How do I handle this emotionally?
This is one of the first things I thought of when I was diagnosed with CD. But since I'm big on smiles, I think I do okay in this department. My advice to you would be to LAUGH! A LOT! I subscribe to 'Joke of the Day' so each morning when I open my email, I get a funny (or not-so funny, but stupid) joke for the day. It starts me out smiling. Laughing releases stress and keeps you healthy, did you know that? So really, laughter IS the best medicine. And since we can't take medicine for CD, we can laugh! Surround yourself with happy people and positive influences. People who are negative or moody will bring you down, and you don't need that right now (or ever)! Try to keep your chin up. There is one very important thing to concentrate on when you have Celiac Disease. And I will tell you this again and again througout the website. My 'Never-Always Rule' goes like this: "NEVER focus on the foods you can no longer eat. ALWAYS focus on what you CAN eat!" This is so important! I can't stress this enough. If you are walking by a donut shop, and you start to get upset, think of your favorite song or movie right away! Or put yourself in your 'happy place' as Happy Gilmore would say. Or think to yourself, "When I get home, I'm going to treat myself to a Mr. Goodbar or a Snickers!" Go out and buy some GF cookies too. Those always make me feel better when I'm thinking about life without Soft Batch cookies. Just remember to not give into that little devil on your shoulder. Don't give him the satisfaction of getting you depressed and angry. Don't let this bring you down. You can think, "Hey, at least I can eat rice and corn and pudding and jello and popcorn! And Thank God they make GF cookies, cakes, and other sweets for me to eat!" Always try to think of one of those phrases, and you will do great! Also… talk about how you feel about the foods you are missing out on with your parents or me or people on this board. You can always find someplace to get foods like that! And if you ever need encouragement, just ask! I'll be here for you, and I'm sure others will as well!

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