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College Student Recently Diagnosed With celiac disease


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#16 BlackburnK

 
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Posted 11 June 2007 - 10:40 AM

WOW, I would like to thank everyone who replied to my questions! You all have given me SO much information and I can't thank you enough!

I also have something I am confused about: I am reading about how you guys get real sick if you get any (tiny amount) or gluten. I don't. I usually just get the rumbling (uncomfortable) of my stomach and small intestine- it seems like it doesn't settle for hours! Also, I usually have diharrea depending on how much gluten I get. So my case is not as bad as it seems like everyone else's case of celiac disease. I go to the gastro doctor on Friday- so I will have more info on myself-- but I am coming to think, do I have celiac disease or is it just an allergy or is it an allergy to other things- maybe dairy??

My lab results came back weak positive for celiac disease.

I guess I am not looking for an answer from you guys, b/c you prolly can't diagnose me! But I just wanted to voice that- maybe I caught it early???

Thanks again to everyone that replies- you all are sooo awesome!
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#17 DarkIvy

 
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Posted 11 June 2007 - 10:57 AM

WOW, I would like to thank everyone who replied to my questions! You all have given me SO much information and I can't thank you enough!

I also have something I am confused about: I am reading about how you guys get real sick if you get any (tiny amount) or gluten. I don't. I usually just get the rumbling (uncomfortable) of my stomach and small intestine- it seems like it doesn't settle for hours! Also, I usually have diharrea depending on how much gluten I get. So my case is not as bad as it seems like everyone else's case of celiac disease. I go to the gastro doctor on Friday- so I will have more info on myself-- but I am coming to think, do I have celiac disease or is it just an allergy or is it an allergy to other things- maybe dairy??

My lab results came back weak positive for celiac disease.

I guess I am not looking for an answer from you guys, b/c you prolly can't diagnose me! But I just wanted to voice that- maybe I caught it early???

Thanks again to everyone that replies- you all are sooo awesome!


First of all, a weak positive blood test is STILL a positive result. Keep in mind that many celiacs actually had negative bloodwork and needed to have the biopsy to prove it at all. The fact that you have had any positive signs at all is in a way a blessing. Your diagnosis might be easier that way. I recently read a celiac cookbook that said something to the effect of "being a little bit celiac is like being a little bit pregnant", the point being either you ARE a celiac or you are NOT a celiac.

Some people may not have such pronounced symptoms. Some people don't really have symptoms at all. For many people, with time on the gluten free diet, getting glutened causes a lot more problems than it originally did.

An allergy is different from celiac. There are different tests for wheat allergies. I suggest you talk these concerns over with your doctor and see what happens... a lot of times people with celiac have other intolerances as well. Keep in mind that it takes a long time to heal, so you might not feel very well for a while even when you go on the diet.

Also, do you plan on having an endoscopy done? If so, you'll probably need to get back on gluten. With any luck your gastro might not bother confirming your bloodwork with an endoscopy, and then you wouldn't have to bother.
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Liz

GLUTEN FREE 06/13/07

#18 aikiducky

 
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Posted 11 June 2007 - 12:01 PM

Some people have no symptoms at all, but have total villous atrophy (meaning their intestine is as damaged as it can get). Other people have crippling symptoms but their intestine only shows minor damage. And every variation of the above. Severity of symptoms doesn't equal severity of damage.

Some people start reacting much more strongly once they have been gluten free for a while. Once the immune system doesn't need to be dealing with a gluten attacker every day, it can gather some strength and REALLY react it seems. :o Other people never get very severe reactions. You'll only know which category you fall into once you've been gluten free for a while.

Pauliina
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#19 JenKuz

 
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Posted 11 June 2007 - 06:06 PM

Some people have no symptoms at all, but have total villous atrophy (meaning their intestine is as damaged as it can get). Other people have crippling symptoms but their intestine only shows minor damage. And every variation of the above. Severity of symptoms doesn't equal severity of damage.

Some people start reacting much more strongly once they have been gluten free for a while. Once the immune system doesn't need to be dealing with a gluten attacker every day, it can gather some strength and REALLY react it seems. :o Other people never get very severe reactions. You'll only know which category you fall into once you've been gluten free for a while.

Pauliina


It's interesting, because the immune system deals with bacteria and viruses like that too. First exposure, strong immune response, second exposure, even stronger faster immune response. Every exposure after that ever faster and stronger. BUT with chronic exposure....usually the immune system "calls a truce" and responds at some kind of equilibrium level.
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Enterolab:

Fecal Antigliadin IgA 20 (Normal Range <10 Units)
Fecal Antitissue Transglutaminase IgA 9 Units (Normal Range <10 Units)
Quantitative Microscopic Fecal Fat Score 1223 Units (Normal Range <300 Units)
Fecal Anti-Soy IgA 18 Units (Normal Range <10 Units)

Serologic equivalent: HLA-DQ 3,3 (Subtype 8,7)

Gastritis dx 10/24
Eosinophilia of large bowel dx 10/29

#20 happygirl

 
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Posted 11 June 2007 - 06:18 PM

gluten is gluten is gluten is gluten (etc) to a Celiac. Lack or less of symptoms does NOT mean that you are ok. If you get glutened your 'switch' is turned on (autoimmune) and it is attacking your body. Goal is to keep the switch off.

There is no gluten lite, only gluten free, to have true results from the diet.

the pregnancy analogy is one of my favorites. Two women can be pregnant...one is horribly sick, morning sickness, ton of weight gain, miserable. Another woman is glowing, no morning sickness, and is cute as a button. Both are pregnant, but have different "reactions" to it. Doesn't mean that one isn't any more pregnant than the other.
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#21 jknnej

 
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Posted 11 June 2007 - 06:53 PM

Wendy's frosties are NOT gluten-free anymore...they used to be. About a year? ago Wendy's added gluten to them. Don't eat it!!!!!
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#22 debmidge

 
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Posted 12 June 2007 - 02:01 AM

The positive blood test clinches it that you have celiac disease. It's a blood test which picks up the level of the antigens in your blood. My husband's was "strong-positive" to which the gastro said that it confirmed that he had celiac disease for many, many years.
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Husband has Celiac Disease and
Husband misdiagnosed for 27 yrs -
The misdiagnosis was: IBS or colitis
Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,
most prestigious medical groups in northern NJ which constantly advertises themselves as
being the "best." This GI told him it was "all in his head."
Serious Depressive state ensued
Finally Diagnosed with celiac disease in 2003
Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.
Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle
Developed neuropathy in 2005
Now has lymphadema 2006
It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

#23 happygirl

 
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Posted 12 June 2007 - 03:14 AM

Wendy's frosties are NOT gluten-free anymore...they used to be. About a year? ago Wendy's added gluten to them. Don't eat it!!!!!



They are. They were re-added, and have been for some time now.

updated march 07: http://www.wendys.co...n_free_list.pdf

"Frosty™:
Original Chocolate Frosty
Vanilla Frosty
M&M® Candy Crumbles
Butterfinger® Candy Crumbles"
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#24 NoGluGirl

 
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Posted 12 June 2007 - 04:43 AM

WOW, I would like to thank everyone who replied to my questions! You all have given me SO much information and I can't thank you enough!

I also have something I am confused about: I am reading about how you guys get real sick if you get any (tiny amount) or gluten. I don't. I usually just get the rumbling (uncomfortable) of my stomach and small intestine- it seems like it doesn't settle for hours! Also, I usually have diharrea depending on how much gluten I get. So my case is not as bad as it seems like everyone else's case of celiac disease. I go to the gastro doctor on Friday- so I will have more info on myself-- but I am coming to think, do I have celiac disease or is it just an allergy or is it an allergy to other things- maybe dairy??

My lab results came back weak positive for celiac disease.

I guess I am not looking for an answer from you guys, b/c you prolly can't diagnose me! But I just wanted to voice that- maybe I caught it early???

Thanks again to everyone that replies- you all are sooo awesome!

Dear BlackburnK,
I am glad your reaction is not as violent as mine is. The thing is, when you are Celiac, even a microscopic amount can harm your intestines. Even if you do not get sick from it, there still can be damage done. This can lead to intestinal cancer, blunted villi, and other terrible illnesses. I actually had negative bloodwork several years ago, but was diagnosed as Celiac this year by my doctor. She says the tests are not always accurate. Gluten in even a slight amount is dangerous.

Sincerely,
NoGluGirl
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Jin

Strawberry Allergy, mold allergy, dustmites allergy, ragweed allergy, dust allergy, food dye allergy - 1985
Asthma - 1994
Ovarian Cyst - May 1999
Anemia - 2000
4 More Ovarian Cysts - March 2000
Bloodwork for Celiac - November 2000 negative
Colonoscopy, Endoscopy, Intercolisis, Gastric Emptying Study - May and June 2001 negative biopsy
Fibromyalgia - June 2001
IBS - June 2001
Gallbladder Removal - July 28, 2003 after doctor said the tests showed nothing, so it was not gallbladder disease. It was very inflamed and irritated and nearly ruptured the surgeon told me at my 10 day post-op check-up.
Thyroid Disease - August 2004
Celiac Disease - March 2007 Current Dr. refers to me as Celiac, as she says blood tests are often inaccurate.

Official Purple Glittery Bat Keeper, District Attorney, and Chinese Restaurant Owner of The Silver Dragon of Rachelville

#25 a1sacch

 
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Posted 22 June 2007 - 08:06 AM

I know you have gotten a lot of replys for this already, but I thought I could add valuable advice.

I was diagnosed right before i graduate high school, so i barely had a grasp on it before i went to college.

i also play soccer at school, and didnot tell anyone about my allergy. ive never wanted to be "that girl" with all the issues and allergies. so i survived for a pre-season on salad and lunch meats and i was so sick for about two weeks playing and running outside. it was probably the stupidest thing ive ever done.

i also got a letter from my dr. that if i ever gave to food services they would cook me a gluten-free meal every night. but again, i was embarassed and i HATED special attention, so i never gave them the letter. i survived a year of college on ice cream and salad and various other things that obviously made me really sick. again, stupid. I was sick every day, but just got through it.

this is NOT something i advise-if you eat at the dining hall-give them a letter-you are paying for them to cook- so take advantage.

my other advise- is to live somewhere with a kitchen. cooking yourself is so much better.

as for on the go: sometimes im on campus for 10 hours- so i bring a ton of snacks.:
some of my favs:
-cut up fruit and veggies (peppers and apples last a long time)
-i always make a sandwich with gluten free bread and bring that
-fruit snacks
-there are these apple crisps that are really good-ill try n find the name of them.

my best advise, i suppose is so pack and plan. if you dont bring something from home, its possible youll end up going through the day with only a candy bar and a bag of chips to eat, which wont feel good at the end of the day.

i hope you are adjusting well. it is really hard. and if you have a hard time getting people to understand the seriousness of your allergy- tell them its a diease- that tends to wake people up a bit
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gluten free since 05/04

#26 a1sacch

 
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Posted 22 June 2007 - 08:14 AM

oh! this will probably help more.

usually i just drink rum or vodka, but when its going to be a long day of drinking, and i dont want to pass out by noon- i drink "woodchucks"-they are a fermented apple cider, not tooo expensive and really good.
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gluten free since 05/04

#27 KaitiUSA

 
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Posted 22 June 2007 - 12:13 PM

I'm a college student to but I do not live on campus. Once you get used to it , it will be very easy. It takes some adjusting but you can have alot that many people can have. There are great substitutes that are becoming more readily available. You have to find the right brands but we can help you here. You can message me and I will be glad to give you some info. You came to the right place:)
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Kaiti
Positive bloodwork
Gluten-free since January 2004
Arkansas

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

#28 NoGluGirl

 
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Posted 23 June 2007 - 01:53 PM

Dear BlackburnK,
I second the sandwiches on gluten-free bread. I actually had my first sandwich since going gluten-free yesterday. It was divine! :D I love big, stacked sandwiches! I am not supposed to eat yeast, though. I kind of felt like I have to eat the bread with yeast since my father paid so much for it. It is a rare treat for me due to affordability.

Sincerely,
NoGluGirl
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Jin

Strawberry Allergy, mold allergy, dustmites allergy, ragweed allergy, dust allergy, food dye allergy - 1985
Asthma - 1994
Ovarian Cyst - May 1999
Anemia - 2000
4 More Ovarian Cysts - March 2000
Bloodwork for Celiac - November 2000 negative
Colonoscopy, Endoscopy, Intercolisis, Gastric Emptying Study - May and June 2001 negative biopsy
Fibromyalgia - June 2001
IBS - June 2001
Gallbladder Removal - July 28, 2003 after doctor said the tests showed nothing, so it was not gallbladder disease. It was very inflamed and irritated and nearly ruptured the surgeon told me at my 10 day post-op check-up.
Thyroid Disease - August 2004
Celiac Disease - March 2007 Current Dr. refers to me as Celiac, as she says blood tests are often inaccurate.

Official Purple Glittery Bat Keeper, District Attorney, and Chinese Restaurant Owner of The Silver Dragon of Rachelville

#29 DestinyLeah

 
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Posted 25 June 2007 - 09:42 AM

To anyone that reads this, please reply with any info you would like to share with me!

I am a college student, always on the go, love to eat out, love to snack.
2 weeks ago I was diagnosed with Celiac disease. I am struggling to find good things to eat.

Do Puffins Cinnamon Cereal have gluten in it?

Are there other names for gluten that is on the ingredient list?

How come some wheat free foods are not gluten free??
I loved miller lite, any one try the wheat free beer?

Also what liquors do I stay away from? or do I have to be that girl and ask everytime I want to get a drink?

Any other info you would like to share, please do, since I am learning everyday.

Thanks,
Krista


Redbridge does not taste like Miller Light, but is good. Try it, you will like it.

I lived off of Honey Rice puffins when I got out of the hospital. They still make me smile.

Even if you ask, 9/10 bartenders have no ides where the alcohol they are serving came from, or what it is made from.
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Diagnosed with Celiac on April 24, 2007

The bad:
Ovarian Cysts- unable to carry a child
Nerve damage
Severe intestinal damage
Near death experiences


The good:
A new outlook on life
A newfound respect for others who must face challenges that they did not necessarily want to face today
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