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Do You Ever Just Not Care?


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#1 Janelson

 
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Posted 21 July 2005 - 03:30 PM

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<_< I was diagnoised with celiac disease about 3 months ago. I started failing out of my college courses because I missed too many days from being sick, my friends pretty much turned their back on me because I never felt like going out, My long think curly hair started falling out, and I hide from the world. Until the day my doctor finally said Janelle either you have tumors in your intestines or you have Celiac disease....I would rather have the tumors I think. The doctor told me I had celiac and then said "I dont know really anything about it so research it on the internet"...ha was not happy with what I found. They told me if I wanted wheat or glutten products that bad to just eat them every once in a while. Since I was diagnoised I have gained about 10 pounds and feel like I lost who I was! Lost what I had! Lost where I was going! Every bit of food I put in my mouth has a good chance of being posin to me...and sometimes I just dont care and I eat it. I almost got fired the other week because I was out sick from it. I use to be able to drink but now find that I get so sick from it...even gluten-free beverages. So many questions and so little answers! I hate the comments people make like ummmm this is good too bad you can never eat it again! My mother is down my throat constantly about seeing a nutrtionist...who can afford that! Many days my stomach bloats to the point that I look pregnant! How attractive! Some days I do fine with dealing with celiac disease but today is a bad day...I was sick all day at work so I bought my favorite salsa and chips to cheer me up...ha just read they have glutten in the salsa so I threw it out my bed room window. This celiac disease has taken everything away from me and I try to smile through it I really do but when you have to be held behind in college, almost get fired from your, lose your friends, and all your favorite foods...I cant help but feel hate!
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#2 Guest_nini_*

 
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Posted 21 July 2005 - 04:07 PM

you are certainly entitled to feel angry. I think a lot of us went through a period where we were mad at the world... The gluten-free diet really truly isn't that bad. There are great Salsa's and chips that ARE gluten free, you just learn which brands are safe and which ones to avoid.

This site can be a wealth of information for you on what you CAN have. Focus on what you can have and not what you can't. There are lot's of fast food places that have gluten-free menus available on their websites. Outback Steakhouse is one restaurant you can walk right into and request a gluten-free menu... more and more companies and places are beginning to take notice of the Celiac community. More and more products are being developed to satisfy our cravings...

Don't give up :D I know it's really hard. After my dx my first trip to a regular grocery store was a nightmare. I cried the entire time I was there because all of my favorite foods had gluten in them. I've since found that a lot of times, just by switching brands, I can find good gluten free foods that are normal mainstream foods.

Oh and you know it's not safe to eat gluten containing foods if you want them bad enough. It's bad enough when we get accidentally glutened, imagine how mad at yourself you will be when you know you did it on purpose because you just didn't care.

What got me being more careful was reminding myself that foods with gluten ARE poison and I don't want to kill myself... do I?
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#3 Jnkmnky

 
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Posted 21 July 2005 - 04:29 PM

You should take care to maintain your new diet. For one thing, it's not that difficult once you've taken some time to find out what you can eat. Dedicate a couple of hours tonight to go through the Parents of kids w/celiac section of this message board. There are lots of great posts telling newbies what they can eat....did you know Post Fruitty Pebbles and Cocoa Pebbles are gluten free~ You can find all the food help you need right here.
The other reason to stick with the diet and accept it is that you run the risk of developing some awful, serious, painful conditions if you continue to eat gluten. Don't resent the newly dx you. I guess this is a "stage" of acceptance that is normal, but try to power through it for your own sake.
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#4 mytummyhurts

 
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Posted 21 July 2005 - 04:53 PM

Amy's brand of salsa is gluten free and really yummy. I like it more now than regular salsas. Many tortilla chips are gluten-free, I eat Santitas. This is actually one of my favorite snacks right now.

I totally understand that you are angry. Like nini said, many of us have felt that way and still do at times. You will get used to it though and find more and more things that you can eat. It took me awhile to totally stop eating things with gluten, probably a few months and then one day I just realized that I hadn't eaten anything with gluten in a couple weeks and I'd hardly even noticed. It's easier to phase things out. Like start with not eating sandwiches, pizza, spaghetti (except gluten-free kinds!) and the obvious things and then move to disecting every ingredients in things that are not that obvious, call companies, research on the internet, etc and then start checking things like lotion, shampoos and medications to make sure they are gluten-free too.

Definitely do not go off the diet or cheat. If you do you can cause serious damage and you may actually get those tumors you wish you had. (Cancer risks goes way up when you do not eat gluten-free.) Just remember celiac disease is one of the few that can totally be cured with diet alone.
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#5 Janelson

 
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Posted 21 July 2005 - 05:04 PM

I feel like mainly I was lied to. I trusted my doctor and he thought that it was okay to eat once in awhile so I did. I thought I could trust what they said. In the mean time of doing that I got sicker and things in my life became harder to obtain. Before I knew it I was use to that diet. Until litteraly the day....not to long ago even.....but the day I came on this site and people were even switching there shampoo...What??? This whole time I have been feeding myself "posin" because the doctors said that it would be fine. Why is it that all of you patients seem to know more than your doctors. Now I have to REALLY get use to this gluten-free diet in the meantime!!
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#6 judy05

 
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Posted 21 July 2005 - 05:40 PM

I feel like mainly I was lied to. I trusted my doctor and he thought that it was okay to eat once in awhile so I did. I thought I could trust what they said. In the mean time of doing that I got sicker and things in my life became harder to obtain. Before I knew it I was use to that diet. Until litteraly the day....not to long ago even.....but the day I came on this site and people were even switching there shampoo...What??? This whole time I have been feeding myself "posin" because the doctors said that it would be fine. Why is it that all of you patients seem to know more than your doctors. Now I have to REALLY get use to this gluten-free diet in the meantime!!

<{POST_SNAPBACK}>




Doctors don't know. In medical school they have been taught that this disease is very rare. My own physician sends all of his digestive problem patients to a GI doc.
He's not interested in screening patients. Forget about them knowing about gluten-free foods and drugs. My GI doc doesn't know what meds are gluten-free. He also wants me to eat wheat because I don't have the gene for Celiac. Keep coming here, you'll learn what you need to know!
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The one resolution, which was in my mind long before it took the form of a resolution, is the key-note of my life. It is this,always to regard as mere impertinences of fate the handicaps which were placed on my life almost at the beginning. I resolved that they should not crush or dwarf my soul, but rather be made to blossom, like Aaron's rod, with flowers-Helen Keller



Judy- Gluten Intolerant

#7 namnammo

 
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Posted 21 July 2005 - 05:49 PM

I was born with celiac. Suckage. <_< but hey I didn't know post makes glutten free cereal! :D Store like Mom's Bulk Food and Nutters hove gluten free foods.
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#8 Hennessey

 
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Posted 21 July 2005 - 06:03 PM

[FONT=Impact][SIZE=1][SIZE=7][COLOR=green]
<_<  I was diagnoised with celiac disease about 3 months ago. I started failing out of my college courses because I missed too many days from being sick, my friends pretty much turned their back on me because I never felt like going out, My long think curly hair started falling out, and I hide from the world. Until the day my doctor finally said Janelle either you have tumors in your intestines or you have Celiac disease....I would rather have the tumors I think. The doctor told me I had celiac and then said "I dont know really anything about it so research it on the internet"...ha was not happy with what I found. They told me if I wanted wheat or glutten products that bad to just eat them every once in a while. Since I was diagnoised I have gained about 10 pounds and feel like I lost who I was! Lost what I had! Lost where I was going! Every bit of food I put in my mouth has a good chance of being posin to me...and sometimes I just dont care and I eat it. I almost got fired the other week because I was out sick from it. I use to be able to drink but now find that I get so sick from it...even gluten-free beverages. So many questions and so little answers! I hate the comments people make like ummmm this is good too bad you can never eat it again! My mother is down my throat constantly about seeing a nutrtionist...who can afford that! Many days my stomach bloats to the point that I look pregnant! How attractive! Some days I do fine with dealing with celiac disease but today is a bad day...I was sick all day at work so I bought my favorite salsa and chips to cheer me up...ha just read they have glutten in the salsa so I threw it out my bed room window. This celiac disease has taken everything away from me and I try to smile through it I really do but when you have to be held behind in college, almost get fired from your, lose your friends, and all your favorite foods...I cant help but feel hate!

<{POST_SNAPBACK}>


Hi,

I don't have it, but my son does. It is eally hard to deal with at first and very frustrating. I found peapod.com helped out, you can go online and look at every item and it shows the food ingredients so you don't have to spend hours in the store reading, you can do all the research before you shop. My son is still a baby, but I have already found some stuff he can have for snacks as he gets older like Fritos, and certain chips like lays classic, and ruffles. You have to read each kind because certain ones have different things in it. My son has a ton of other allergies like soy, dairy, eggs, wheat.....so it is hard. You'll do ok once you know what you can have! Good luck and take care.
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#9 Guest_mlwaller_*

 
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Posted 21 July 2005 - 07:42 PM

I think food becomes overbearing when you are trying to eat within all these set limits. Do you have any other food restrictions that you know of? My quality of life improved when I stopped trying to change my diet and started substituting. Sounds redundant I know but there really is a difference. Instead of thinking "what can I eat?" think "what do I want to eat?" Finding a way to eat like you used to *without the gluten* will at least make one aspect of your life more normal. I am also a college student and whenever I make gluten-free pizza it makes me feel *normal* again.

As for your friends, this is a great test to find out which of your pals are really there for you. Adjusting to this lifestyle is hard, even for them. They know even less about the disease than you, and they might be having a hard time bringing it up. Maybe take some time to talk about what's hard for you and what you need from them. Remember to mention that you might not be as good of a friend right now, but you will try your best.

If you ever need a gluten-free friend, feel free to email me, good luck and just know that this is the toughest time. :)
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#10 jenvan

 
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Posted 22 July 2005 - 05:10 AM

Janelson-
We know it can be very hard, but after you are over the initial hump, things will get easier. I would highly recommend you read "wheat free, worry free" by Danna Korn. this book will help 'set the record straight' for you about what celiac and the gluten-free diet is all about. it is a great resource. you can buy/order it in most stores or get it on amazon .com.

i also recommend trying to find a support group in your area if there is one. i learned a ton from mine intially, like where to get gluten-free food locally, and they were an encouragement to me. that is important.

you will continue to learn, as most of us have, that you have to be your own advocate. most doctors are still poorly educated on this disease, so you need to be proactive, as you are right now, and search out the answers and resources on your own.

i'm sure your mother is just worried and trying to care for you ? a nutritionist can be a good idea, but many of us knew more than the nutritionists we were sent to ! your best resources are the the book i mentioned this site. have you cked out this post yet? have celiac3270 e-mail you the gluten-free food list, that will help. this site is another resource: http://www.clanthompson.com/index.php3 i ordered one of their gluten-free food lists that i keep on my palm pilot and goes with me wherever i am. some of the grocery stores like wild oats, whole foods and trader joes also have gluten-free food lists for the products in their stores.

give yourself time and try to be patient (it is hard!)...but celiac disease hasn't taken everything from you. if your friends fail or leave you because of celiac, then i can't help but think they were not true friends. the food--you can find some great replacements, and many items, like regular snickers, are gluten-free already. i am sorry about your job. perhaps you can discuss the situation with them, and gain some flexibility for a while? gaining weight is hard too, but they are ways to combat that and maintain where you'd like to be. you may have to change some of the foods you are eating. the sooner you are fiercely gluten-free, the sooner you will feel better. and many people on this site noticed a difference immediately. keep us updated and welcome !
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~~~~~~~
Jen
Indianapolis, IN

gluten-free since Feb 2005
dairy-free

#11 stef_the_kicking_cuty

 
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Posted 22 July 2005 - 05:26 AM

I thought exactly like Megan. I tried to think about foods I would like to have and then I substituted them. And doing this I also found out that a lot of these foods actually are glutenfree already. Like the Nutella I eat, yummy :lol:

That the Fruity Pepples from Post are gluten-free I found out with a stupid co-incidence :rolleyes: . I went for groceries. And during the process of finding low fat stuff for my husband (He's starting to get a little belly there. My gluten-free cooking seems to get better :P ), I was in the cereal section. The more colorfull, the better with him. He's like a little kid sometimes :huh: . And before he knew me, he always bought these huge cereal baggies with these colorfull thingis in them, to save money. But that day I thought, why not change the fat content of what he already eats anyway? Most of the time he wont even notice :P . So I looked for other colorfull cereals and brands as well. In doing this I saw the Post Fruity Pebbles with 1/2 the sugar of regular cereal, so I just grabbed them. Without thinking what I was doing I felt into my habit of reading the labels (even though it wasn't for me). And before I knew it, I was through the label and read "KF Holdings". And I thought "Hold on a second, doesn't Kraft state all the wheat clearly on the label?" And then I read the label again to make sure I didn't miss something. This is so great. I didn't know, that the Cocoa Pebbles are glutenfree, too. Wow, this is awesome :o . I have to buy and try them immediately. They are cheaper then our glutenfree stuff for sure. I pay almost 6 Dollars for one of these gluten-free cereals in our health food store...

Well, the funny thing was. I went home then and I thought I have to shock my husband. So I sat down at the dining room table with the bag of Fruity Pebbles in front of me and a cereal bowl and waited for him to come home. As soon as he pulled into our driveway I started eating :D . When he came through the door he said hello and passed me to go into the bathroom. After he changed he came back out and stared at me with that look in his eyes "What's wrong with this picture?" And I smiled and stared back and said "What?" ;) . And he said "You can eat those???" and then I explained it to him. He thought it was great. Now when he comes home today and hears I can have the Cocoa Pebbles, too, he will be even more amazed...
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Posted 22 July 2005 - 09:55 AM

Janelson ~ I use to read new things on this board and then go home crying... it is better to know, and after a while, it does get easier. There are SO many yummy things to eat, and most everything I use to eat can be subed with a gluten-free copy. I know that doesn't help how you are feeling NOW, but at least you know we are here to help and listen. :) Please feel better...
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#13 anniej55

 
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Posted 22 July 2005 - 10:55 AM

Hi,

I come from this from both sides. I was just diagnosed with celiac disease and can very VERY angry sometimes. I'm almost 50 and finally have money to go grocery shopping, buy what I want and not worry about the cost .... and now this? Who the hell thought this joke up? I call those times my "pity parties". Cause I'm definately feeling sorry for myself. And when I'm finally able to , I tap into how scared I was during all the testing, thinking it was cancer. And as someone said - it could be a whole lot worse. So have your angry party, you deserve it. But then try to move on ....

And yes, trying times do seem to bring out the worst in friends. If they' ve left you - they were NOT friends to begin with. Good riddance. I know it's difficult and i'm not demeaning college friendships, but a lot of them are based on all you being in the same dorm, class, etc.

I wish my daughter would be tested; she is a college student who has various medical problems. Ahem - she was fine until a bout of mono her senior year in high school. My guess is celiac disease, but she also has PCOS and a heart defect (just recently discovered) and is doctored out. Can't say I blame her.

Practical advice - you get a note from your doctor explaining your medical condition. You pull up articles about celiac disease - explaining the physical symptons, brain fog, etd - and go to the Dean of the College. And you ask for more time to finish the courses you had to miss. Most colleges are willing to work with students; they are not there to fail them. What they can do is change your failing grades to Incompletes and then you finish up the papers, etc, that fell by the wayside. At the very least it will be on record for the coming year. My daughter, sigh give me strength, refused to listen to me and has had her financial aid taken away. She went to the college yesterday and they are working with her on it - including changing a failing grade due to absences changed to an Incomplete, which will then be changed to a grade when she completes a paper.

Hope this helps. Hang in there. And I honestly do understand the anger and despair. I certainly still feel that way and the only reason why I haven't smashed all the glasses in the house is because I'd have to clean it up.

Please, let me know how you're doing. College is way too important to give up on.

Ann
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#14 watkinson

 
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Posted 22 July 2005 - 11:56 AM

Hi Janelson,
I'm so sorry that you are having such a hard time. For me, I was so desperately ill for soooo many years, (progressively getting worse as the years went on) that when I finally discovered that I had celiacs, I balled my eyes out. Not because I was sad that I had the disease, but because of overwhelming relief that I finally discovered what was wrong, and that best of all it was easily (yes, I said easily) managed. For every autoimmune disease there is no cure, and most have difficult ways that they have to manage the symptoms of their illness. Some even die from there disease (like MS). But for a celiac, we can "cure" ourselves with a gluten free diet.

I know it's overwhelming at first, but I promise it gets easier. And when you start to feel better you will be happy.

Can I suggest several things? First you sound so depressed. Please get on a good multi vitamin (gluten free of course) Take an extra B-complex (Trader Joes has a gluten-free one that you put under the tongue, that way it gets into your blood stream right away instead of having to go by way of the intestines.) Also...Please start taking Omega-3 fatty acids. Whole foods has a GFcaplet that is great. It is good for every system in the body, but especially for the brain. Studies show it relieves, even completely heals depression, bi-polar dissorder, ADD and ADHD, ect. .

Lastly, please search through this site and check out the pamphlets and booklets you can purchase. like the gluten-free dinning guide. It lists many restaurants throughout the country that have gluten-free menus. You can also purchase a booklet or a down load version of many mainstream grocery store items. You will be surprised as time goes by to discover all the regular stuff you can eat. if you google different companies you can get a list of all thier regular grocery store items that are gluten-free. For exapmle... Google _Oscar meyer gluten free, or Kraft gluten-free, nestle gluten-free, ect.) I keep a folder with me when I go to the grocery store.

Sorry this post is so long. One last thing, I promise. :) I have a daugther who is a celiac and goes to the University of Maryland. If you would like to, you can email me and I will give you her email address. She can help with lots of issues.

It does get better, I promise :D

Wendy
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#15 jenvan

 
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Posted 22 July 2005 - 11:59 AM

http://www.glutenfre...720

You can go here to get celiac3270 to send you the delphi list if you want.
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~~~~~~~
Jen
Indianapolis, IN

gluten-free since Feb 2005
dairy-free




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