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Does Anyone Like Being Celiac


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34 replies to this topic

#1 runningcrazy

 
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Posted 04 November 2010 - 03:03 PM

I know I probably sound like a nut, but I kind of enjoy it. I've always been a weird eater, and im also dairy free and vegetarian...I guess its kind of fun for me to be different.
Sure I hate getting weird looks when i bring weird food, or not being able to eat the cake at a party, or having to look stuff up ahead of time, or accidently contaminating myself..(jeez maybe im talking myself out of liking it) But I like to know that i am doing something healthy and i like the challenge of finding/making new foods. Does anyone else relate?
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#2 Emilushka

 
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Posted 04 November 2010 - 03:14 PM

I enjoy feeling better again. I can't say that I enjoy Celiac ... I'm weird enough without having dietary restrictions. But I don't really mind the Celiac too much by itself. I really miss cheese. I think if I could get back the ability to eat cheese, I wouldn't mind at all.
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#3 Rocknroll Celiac

 
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Posted 04 November 2010 - 03:15 PM

it's funny, i'm a much different person than all my peers to begin with, and being a celiac - although extremely alienating - does force me to live a more healthy and productive lifestyle. I don't enjoy not being able to take part in any social aspect that all the other young people around me do, but the fact of the matter is that partying and being cool are a symptom of 21st century culture. It really opens up a different perspective on what the universe has planned for me.
So, no sir, I don't like it. But I like the effects of it.
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#4 jeanne-

 
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Posted 04 November 2010 - 04:34 PM

Funny you started this thread. Yesterday I got the results from the genetic testing. Everything came back neg. I was disapointed. The gluten free diet does make me feel better (dx'ed non celiac gluten sensitivity). But I know that my family will think I can cheat because I don't have a REAL disease. If I could tell them that I have celiac, there would not be any hassle about meals for the holidays. I can hear them now asking why do I always have to be weird and different.
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#5 Coinkey

 
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Posted 04 November 2010 - 04:58 PM

Funny you started this thread. Yesterday I got the results from the genetic testing. Everything came back neg. I was disapointed. The gluten free diet does make me feel better (dx'ed non celiac gluten sensitivity). But I know that my family will think I can cheat because I don't have a REAL disease. If I could tell them that I have celiac, there would not be any hassle about meals for the holidays. I can hear them now asking why do I always have to be weird and different.



Ha Ha. That was my exact feeling. Disappointment that it is not properly diagnosed. So now I get to answer people with- I just feel better not eating gluten so I don't, most of the time it can't be diagnosed properly anyway and you have to be severely far gone for them to catch it- so I'm taking a shortcut and feeling way better and living my life from 26 instead of 45. Then I bite into my delicious rice pasta dish when they are sat there eating icky Kraft Dinner. :P I like being gluten free.
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Self diagnosed as gluten free as all tests were negative and the doctor was completely useless.

Gluten Free since June 2010
Suspecting soy and milk as of June 2011


#6 Juliebove

 
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Posted 04 November 2010 - 05:11 PM

I don't have celiac but I do have diabetes and other food allergies.

You mentioned cake. I have always hated cake! So much so that I used to ask for no cake to be served at my birthday. Frankly I would be far happier if there were no sweets served at my birthday. I have never been a big sweets eater. But my mom always insists on having something. She used to get me pie. I don't really like pie either. One year I just said I wanted fresh strawberries and sugar cookies. But do you think they could find sugar cookies? Apparently they are hard to find. And my mom doesn't like to cook or bake. But they finally found those and we had that.

Now at birthdays my mom my makes a big to do. Not only does she get the birthday person's favorite dessert, but she gets desserts for everyone else as well. Except for my daughter who needs the gluten-free. I think perhaps she just doesn't understand the diet for her or something. Or maybe she can't find the right stuff. She and my dad did go to the U district a couple of times for a vegan, gluten-free cake for her birthday. But now they just tell me to bring something for her. And she wants Udi's blueberry muffins. Fine.

But for me? Makes it tons easier. Used to be I would decline the cake, because I didn't want the cake and they would always insist that I ate least try the cake. Well, now I can't. I just tell them I have diabetes and an egg allergy and can't have it. Shuts them right up.

But would I honestly want to have diabetes and food allergies? Of course not! However I look at it from the standpoint that nobody is perfect. We all have something wrong with us. Or perhaps I should say something that makes us different than other people. It's just something we all have to deal with. I might not have celiac, but I have my own issues.
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#7 cassP

 
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Posted 04 November 2010 - 05:12 PM

Funny you started this thread. Yesterday I got the results from the genetic testing. Everything came back neg. I was disapointed. The gluten free diet does make me feel better (dx'ed non celiac gluten sensitivity). But I know that my family will think I can cheat because I don't have a REAL disease. If I could tell them that I have celiac, there would not be any hassle about meals for the holidays. I can hear them now asking why do I always have to be weird and different.


nonceliac gluten intolerance can be just as serious!!!! sometimes more... just depends on everyone's individual makeup... and genetics.. gluten has been linked to Crohns.. antigliadin antibodies has been linked to heart disease.. wheat germ agglutin has been linked to esophageal and prostate cancer.. goes on and on and on..

PLUS- you said your genetic test was negative- but what did they test for?? only DQ2 and DQ8?? there's possibly 27 genes that could be involved
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1986- Elevated Speckled ANA/no Lupus.negative Sjorgens
2008- AntiGliadin IGA/IGg~ Negative,TTG IGA/IGg~ Weak Positive, Endomysial Antibody~ Positive, IGA Deficient.
no biopsy (insurance denied)
6/2010- Enterolab Gene Test:
HLA-DQB1 Allele 1 0302
HLA-DQB1 Allele 2 0302
HLADQ 3,3 (subtype 8,8)
7/2010- 100% Gluten Free
8/2010- DH
10/2010-Hypothyroid dx-> 12/2010 Hashimoto's dx + 1/11- Graves dx :(

#8 jeanne-

 
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Posted 04 November 2010 - 06:00 PM

nonceliac gluten intolerance can be just as serious!!!! sometimes more... just depends on everyone's individual makeup... and genetics.. gluten has been linked to Crohns.. antigliadin antibodies has been linked to heart disease.. wheat germ agglutin has been linked to esophageal and prostate cancer.. goes on and on and on..

PLUS- you said your genetic test was negative- but what did they test for?? only DQ2 and DQ8?? there's possibly 27 genes that could be involved

The test covered DQ1,2,3,and8. The test for Hashi's was a definate pos. at 1362 (normal < 60). Point well taken.
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#9 kareng

 
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Posted 04 November 2010 - 07:10 PM

Funny you started this thread. Yesterday I got the results from the genetic testing. Everything came back neg. I was disapointed. The gluten free diet does make me feel better (dx'ed non celiac gluten sensitivity). But I know that my family will think I can cheat because I don't have a REAL disease. If I could tell them that I have celiac, there would not be any hassle about meals for the holidays. I can hear them now asking why do I always have to be weird and different.

Why do they have to know the exact test results? Obviously, you are gluten intolerant. Tell them you have tested positive for gluten intolerance, cause ,with the diet response, you have.
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#10 cassP

 
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Posted 04 November 2010 - 07:56 PM

The test covered DQ1,2,3,and8. The test for Hashi's was a definate pos. at 1362 (normal < 60). Point well taken.


there's gluten intolerants & celiacs on here with DQ6 and DQ9, etc, etc,

there is still so much for the medical community to learn about all of this
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1986- Elevated Speckled ANA/no Lupus.negative Sjorgens
2008- AntiGliadin IGA/IGg~ Negative,TTG IGA/IGg~ Weak Positive, Endomysial Antibody~ Positive, IGA Deficient.
no biopsy (insurance denied)
6/2010- Enterolab Gene Test:
HLA-DQB1 Allele 1 0302
HLA-DQB1 Allele 2 0302
HLADQ 3,3 (subtype 8,8)
7/2010- 100% Gluten Free
8/2010- DH
10/2010-Hypothyroid dx-> 12/2010 Hashimoto's dx + 1/11- Graves dx :(

#11 yolo

 
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Posted 04 November 2010 - 10:33 PM

I like being celiac in that following this diet I look and feel like I am 15 to 20 years younger than most people my age (61). I also am much more knowledgeable about health which feels good. I already went through a lot of the stuff beginning in my twenties that a lot of people don't face until they are my age.

The final blessing came 3 years ago when I discovered I needed to be free of even trace glutens--which I didn't know about previously. The change in my health for the better was and is remarkable! I feel like I am way ahead of the game in that respect. I now look forward to the rest of my "old age" rather than dreading it like most people in this country. When I look at the average diet I cringe actually. I certainly wouldn't want to eat like most people here do...

Nevertheless, it would be nice to be less reactive to trace amounts of gluten since as it is I get cc'd from trace gluten in the environment at work etc. and have resultant migraines etc. I would rather not deal with. However it still is way better than being sick for one to three months like I used to get all the time...

One benefit actually that I have read about and observed is that it is often the case that people who have celiac and don't eat gluten are more flexible, are more resistant to disease and often live to be older compared to the rest of the population.

Bea
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Diagnosed celiac sprue as infant: failure to thrive & pneumonia-back on grains age 4. Began herbs 1971 combating chronic kidney disease/general ill health 1973. Avoid wheat family and "allergens" by 1980. Late 80's doc. diagnosed candida: cave-man diet. Diagnosed degraded myelin sheath 2006; need co-enzyme B vitamins. Discovered celiac fall 2007; finally told diagnosis as infant. Recently found I am salicylic acid intolerant. Ironically can't tolerate most herbs now. Can now eat brown rice & other gluten-free grains (except corn) & even maple syrup & now homeopathic medicine works! Am still exploring the shape of this elephant but I've made progress!

#12 sandsurfgirl

 
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Posted 05 November 2010 - 12:57 AM

Funny you started this thread. Yesterday I got the results from the genetic testing. Everything came back neg. I was disapointed. The gluten free diet does make me feel better (dx'ed non celiac gluten sensitivity). But I know that my family will think I can cheat because I don't have a REAL disease. If I could tell them that I have celiac, there would not be any hassle about meals for the holidays. I can hear them now asking why do I always have to be weird and different.


Don't tell them!!! Lie and say it was positive. Make your life easier!!!
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Lots of doctors diagnosed me with lots of things including IBS, lactose intolerance, wheat intolerance, and quite a few of them threw up their hands in total confusion.

Had GI symptoms, allergy symptoms and unexplained illness my whole life.

Jan. 2010 Diagnosed celiac at the age of 40.
Ready to get well and get on with my life!

#13 sandsurfgirl

 
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Posted 05 November 2010 - 12:59 AM

This is crazy talk-- liking celiac! LOL I abhor celiac and the pain in the buttocks it is for me. But... I love feeling good so I love that I was finally diagnosed celiac and I'm not sick anymore.

But if I could have 3 wishes from a genie I'd wish to be a gluten eater again in a heartbeat. Celiac SUCKS!!!!!
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Lots of doctors diagnosed me with lots of things including IBS, lactose intolerance, wheat intolerance, and quite a few of them threw up their hands in total confusion.

Had GI symptoms, allergy symptoms and unexplained illness my whole life.

Jan. 2010 Diagnosed celiac at the age of 40.
Ready to get well and get on with my life!

#14 modiddly16

 
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Posted 05 November 2010 - 04:02 AM

I don't really like being a celiac but I do like educating people about it! Most people I talk to are quite interested in learning more about it and I think the more educated people are on the disease, maybe the more I'll end up liking it in the future when more places offer items for us to enjoy! (that may have been the longest sentence ever...I had to breath even after typing it :P )
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#15 kitgordon

 
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Posted 05 November 2010 - 08:48 AM

I enjoy the challenge of cooking and baking new things, and finding and adapting recipes - I am actually liking to cook more than I have in years. I had gotten into such a rut of cooking the "same old things". And I enjoy not being afraid to be away from the bathroom. But, if I could make celiac go away, and go back to eating like everybody else, I would, of course.
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