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Just Diagnosed... Lots Of Questions!


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11 replies to this topic

#1 LivinLife

 
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Posted 09 February 2005 - 10:55 AM

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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#2 MySuicidalTurtle

 
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Posted 09 February 2005 - 11:52 AM

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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#3 KaitiUSA

 
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Posted 09 February 2005 - 11:56 AM

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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Kaiti
Positive bloodwork
Gluten-free since January 2004
Arkansas

Jeremiah 29:11- "For I know the plans that I have for you, declares the Lord, plans for you to prosper and not harm you,plans to give you a hope and future"

"One Nation, Under God"

Feel free to email me anytime....jkbrodbent@yahoo.com

#4 LivinLife

 
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Posted 09 February 2005 - 12:14 PM

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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#5 tarnalberry

 
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Posted 09 February 2005 - 12:59 PM

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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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
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Bellevue, WA

#6 KaitiUSA

 
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Posted 09 February 2005 - 01:39 PM

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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Kaiti
Positive bloodwork
Gluten-free since January 2004
Arkansas

Jeremiah 29:11- "For I know the plans that I have for you, declares the Lord, plans for you to prosper and not harm you,plans to give you a hope and future"

"One Nation, Under God"

Feel free to email me anytime....jkbrodbent@yahoo.com

#7 flagbabyds

 
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Posted 09 February 2005 - 06:42 PM

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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#8 celiac3270

 
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Posted 10 February 2005 - 04:28 AM

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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#9 LivinLife

 
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Posted 10 February 2005 - 11:54 AM

Thanks guys! You all rock :)
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#10 Gables

 
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Posted 11 February 2005 - 02:05 PM

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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#11 KaitiUSA

 
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Posted 11 February 2005 - 02:17 PM

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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Kaiti
Positive bloodwork
Gluten-free since January 2004
Arkansas

Jeremiah 29:11- "For I know the plans that I have for you, declares the Lord, plans for you to prosper and not harm you,plans to give you a hope and future"

"One Nation, Under God"

Feel free to email me anytime....jkbrodbent@yahoo.com

#12 MySuicidalTurtle

 
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Posted 11 February 2005 - 05:47 PM

You can find some answers from the main site http://www.celiac.co...-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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