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Just Diagnosed... Lots Of Questions!
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Hey! I'm 17 and was diagnosed last week with celiac disease. My dad and brother and aunt all have it so I have a pretty good idea on what ingredients to look out for. I never thought i ever showed any symptoms, but recently I've been wondering if my being constantly tired and yet unable to sleep could have been in some way related to celiac disease...

Also, I've been trying to explain to my friends why I can't have most of the typical teen foods (regular pizza, cookies, KFC, etc.) and some just don't seem to understand why it's such a big deal if I "cheat" every once and awhile... Is there anyway I can explain? To them I look the same, and I seem healthy!

Second last question- I heard that even things that have come into contact with wheat (cross contamination, etc.) are to be avoided. And things like "hydrolised vegetable protein" and "seasonings" are also things that I've been told to avoid... but if they're the last ingredient on the list, and arn't even guaranteed to contain gluten, can these really do that much damage?

And finally (sorry I'm bombarding you all!), is it possible for someone who has had very few stomach aches (I had some but always related them to the stomach flu or something) to develope these stomach pains after going gluten-free? I had a really bad stomach ache after having a doughnut about 2 days after going gluten-free... It was supposed to be my "final farewell" but I felt so sick that i had to call my mom to pick me up from school... Is that normal?

Thanks for reading and answering my questions!

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Hello! I am 19 and have been diagnosed for about 2 years. My brother is your age and hehas Celiacs, too. It;s good that you have help. I had a hard time teaching my Mother and brother the ropes when they were diagnoes a year and a half after me.

With your firends. . .well, it was easier for me since I was always sick. . .but for you. .. tell them that you were ot healthy on the inside and that if you would continue to eat gluten that one day you could become very ill and even develop life threatening things.

Tell them that if you cheat, even one, you destroy you body. It is not good to put yourself in that position. Also, my brother "cheats" by eating things that don't say they contain gluten but have "spices" and "flavors." He complains so much about not feeling well and all that stuff. When he sticks the foods I pick for him, heis fine. If you are going to be glutenfree you need to commit. If you let those little bts of gluten in you should just eat a pience of whole wheat bread. . .it's the same thing!

The doughnut thing is normal.

Also, if you practice you can make tastey cookies, pizza, and treats gluten-free! I make cookies a lot from scratch (the box kind are blech to me) and my friends eat them up and even ask me to make them. My Mom eats pizza 4 times a week or so and I always tease her that she eats more pizza than a college student!

Good luck and ask all the questions you need!

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I am 17 to and I went through the same thing...with friends saying o whats the big deal if you cheat. Well the big deal is my intestines get chewed up and I will have increased risks of life threatening diseases such as cancer. I was normal and healthy then I had mono and that triggered my celiac. I had so many bad days until I got off of gluten so it was easier for them to understand.

When you are off of gluten and try to get back on it your stomach will not tolerate it. celiac disease is an intolerance not an allergy. A little bit of gluten can do alot of damage.

Everything needs to be gluten free....cosmetics, shampoos, soaps, lotions, literally everything. It seems hard at first because it can seem very overwelming. Once you learn the products you can have it gets easier.

Kraft is a brand that unless it says wheat, rye, barley, or oats on the label then it is gluten free. Some brands can hide wheat under other ingredients so in alot of cases you need to call the company. They will give you a gluten free list if they have one. I can help you with a list as well if you need help with brands of products as well as foods just let me know. :D

You can have things like your friends too...there are some pretty nice treats we can have :D

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Everything needs to be gluten free....cosmetics, shampoos, soaps, lotions, literally everything.

woah! Those have gluten in them? Surely it's not listed as gluten is it?

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Why it's a big deal to cheat, even occasionally? Untreated celiac (which means not having strict adherence to a gluten-free diet) increases your chances for osteoporosis, anemia, lymphoma, intestinal polyps, vitamin deficiencies, other auto-immune diseases, and generally dieing early. It may also give you regular symptoms while you're eating, including fatigue, brain fog, diahrreah or constipation, abdominal pain, bloating, joint pain, headaches, irritability, dairy intolerance, etc.

Do you really have to worry about contamination? Unfortunately, yes. The process that causes damage in the intestines is a chemical one. It only takes one gluten molecule to be recognized by your immune system to start a chain of events that damages the villi in your intestine. Given that wheat is around us in the world, our intakes are probably not absolutely zero. But numerous studies have shown that damage definitely occurs with as little as 200ppm of gluten in a product. That's less than a crumb of bread that would set you off. And some studies suggest the limit may be lower than that.

Is that change normal? yep. Many people get more sensitive as they go gluten-free.

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There is wheat starch in alot of lipstick, alot of eye makeup has wheat germ oil. There are also things that can be hidden in the makeup. Alot of shampoos have wheat in them. The whole Dove line will not hide anything. I use their shampoos, hairspray, soap etc. I use Bare Escentuals makeup...all of that is gluten-free. The reason it is so important is when shampoo, soap, etc get on your hands and you touch food after that it gets into your mouth then. Even though you are not eating the shampoo etc..how many times a day do you subconciously touch your hair? Now say you have wheat shampoo that you used and then you keep touching your hair and then eating something. You then can get traces that you then digest. Even the slightest amount can cause some major reactions even if you can not feel the effects(some have symptoms some don't) the slightest bit still causes damage. That's why it is important to just use gluten free products. It's better safe then sorry. But you learn the brands and it gets easier so don't feel too overwhelmed.

A while ago I was using some lip gloss and I noticed when I started using that was the time I started feeling off again. There was nothing I thought was an issue well I called the company to make sure(which I should have done in the first place) and the Vitamin E in it was derived from wheat. That's what was causing the reaction. So now I am extremely careful and have been great ever since.

Good luck with everything and again if you need any help with anything let me know :D

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Hi!

I'm almost 15, and I was diagnosed when I was 20 months old, so I don't even remember Giuten, SO just tell your friends that eating gluten could kill you. NO cross contamination at all because Even the slightest molecule could make you sick for a week. Call all the companies to make sure it is gluten-free before you use any product because if there is cross contamination then it will probably make you sick. Anything that you touch it should be gluten-free. Any make-up, shampoo, lotion, anything, because if you tough it then it could be hard to get all the little tiny molecules off of your hands.

If you have any questons then you can e-mail me celiacmolly08@mac.com or IM me @ missmolly3001

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Yes--even a little bit will damage your intestines--whether you feel it or not.

Second, your body will become more sensitive to any gluten once you start the diet. This is your body's way of warning you that it just ate something that's bad--celiacs will often have much more violent reactions to gluten if they've been gluten-free for awhile...this is perfectly natural. When you're on gluten, your body just becomes accustomed to the gluten, in a sense, though it still does tons of damage, of course.

Technically, you don't need things such as lotions and shampoo to be gluten-free, but it's much better for you. If you put lotion on your hands that contains gluten and then you go pick up a potato chip or something, you could get contaminated. Watch out for toothpaste, aspirin, other medications, etc.

For dealing with friends, just explain that even a crumb will damage your intestines and if you cheat continually, you could run into longterm complications, as tarnalberry said. It's your body, not theirs, so they should respect that you have to stay on this diet.

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Hey I am 16 and I was Diagnosed today :( . I have not really gone for a consultation yet with a dcotor or anything. So I am kinda clueless as to what this is. My mom may have had it her whole life but did not know, and that is where I got it from; she will be tested soon. I understand that I need to eat differently, and my dad and I went to a healthy organic store but there is a twist, I also have diabetes (found out today also). So now we find foods that say Gluten free, wheat free.. but they all have sugar. and the ones that have no sugar have gluten and wheat lol. I am gonna miss alot of old foods, especialy pizza, but my friends are understanding and they are gonna go to a store with me to look for some wheat free gluten free sugar free pizza dough, and sauce :). Anyway, is there any sort of diet advice that I can have? I doubt if we can find any stuff I am looking for in stores near me; and my parents arent to keen on the whole ordering stuff online, although I wish they were cuz I found some good stuff on this web site.

Well, can someone sort of fill in the gaps for me about celiac disease? I have no clue what it even does to me... I looked around this site, but I couldn't find much. Any reply with bits if info would be helpful; or possibly a link to somewhere where I can read about it.

Thanks;

Gabe, 16, Maryland

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Gables-Hey I live in MD to. I'm not sure where you are but around where I am there are some good stores around that I know carry alot of good tasting gluten free foods. I don't know much about the diabetes thing so I can't help you there but I can definately help you from the celiac side of things. Also if your parents don't like ordering online you can get the # and then have them call and order it. My mom doesn't like to order online either. If you need any help just contact me and I'll help you the best I can. :D Good luck

What happens if a celiac does not follow the diet it tears up the intestine (symptoms or not) and it increases your chances for cancer by over 100 times and and increases your chance for other life threatening illnesses.

We can not have anything with wheat,rye,barley, or oats and have to check most labels. Alot of companies will hide wheat under modified food starch. There are things on labels you have to be careful about. Kraft and some other brands will not hide anything. You can have their products as long as it does not say wheat,rye, barley, or oats. Again if you need help with brands and so forth just let me know :D

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You can find some answers from the main site http://www.celiac.com/st_main.html?p_catid...-30105449437.11

The thing is that it takes some time to grasp what this disease is and how it will affect you. It's good that you and your Dad have gone out and shopped. There are many Diabetic Celiacs and you should be able to find some here who can help you on some good safe food for you!

I am trying to think about other places with information on Celiacs. I picked up a lot at different support groups and in books and through others.

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    • First, do you have celiac disease?  Have you recently had a celiac antibodies follow-up blood test panel to see if gluten has been actually getting into your diet by accident or through cross contamination?  If you haven't had the test, you should ask your doctor for one.  You could also also ask for a follow-up endoscopy to see if you intestines have truly healed.  This will rule out if gluten is really the problem.    If you don't have celiac, I assume you have Non-celiac gluten Intolerance because no one would stick to the gluten-free diet for six years unless you have had reductions in symptoms.  There is no test for NCGI unfortunately.  So, it is hard to say if gluten has been sneaking into your diet.  You really are going to have to try to figure out if you are getting gluten into your diet.  If gluten is not the problem, then your doctor needs to check you for other issues, like SIBO. There is a test to check for SIBO.  Has this been done?   Once a celiac, always a celiac.  There is no cure for celiac disease except to remain on a gluten free diet for life.  I am not sure about NCGI.  Not much research has been done.  Maybe others can chime in?    
    • I am so confused right now.... 6 years ago I went on gluten free diet... after being on it for the first yr I was 100%better up until 5 months ago in got the "flu" the doctors told me to cut out dairy sonic did and my diarrhea  became better but not completely gone would not have it every day tho. I went to the gi doctor and they said to cut out fructose and dairy and keep gluten out... yesterday I went to the dietitian to see what I can eat and she gave me the list for fructose... she said it should have been on a antibiotic for sibo.... eventually I will be able to add dairy back and maybe gluten.... I said how can I add gluten back when this was my first problem... she goes well through fructose goes hand in hand with it... I said with gluten I vomit and am sick for weeks.... fructose isn't that bad I vomit sometimes but I'm not sick for weeks.... I'm just confused on really what is going on and was wondering if you or someone you know had sibo from gluten and or fructose and how Is this all related?
    • I see no one has responded to your query.  Unfortunately I have yet to try making a pie crust.  It was something I never mastered before going gluten free.  Have you looked on Pinterest?  You might find something there.
    • I honestly feel like both doctors think it's all in my head even though there is proof.  Yeah there was a point when I felt crazy.  That was when I was being shuffled from dr to dr being given individual diagnoses of my problems.  None of those diagnoses ever made me get better.  Seriously I was diagnosed with heart palpitations, neurocardiogenic syncope, I was given a butt load of steroids because a dr felt like I was producing too much adrenaline, freaking had a few tell me I was depressed, and the good ol IBS.  It seemed most wanted to push pills.  It's all just ridiculous!
    • I can't believe your doctors!!! You have a daughter who is dx'd already! Yet the ped doesn't want to test your other kids unless you have a dx????!!! Are you kidding me???!!! That's absurd!!! They have a first degree relative who has been dx'd with celiac already. There is no need to wait to see what you turn out to be!! And then, and then, and then....don't even get me started on your doctor!!! Does he have brain damage? Oh this is insane & ridiculous!  I have never heard of a disease that doctors are so unwilling to consider or test for OR to diagnose as this one! Usually they are hot to trot to make a dx but say the word celiac & they shake in their boots. Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!!!!!!!!!!!!!!!!!!
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