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Does Anyone Like Being Celiac
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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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In my most optimistic voice I say, absolutely not! I don't like being this way. Even makes it harder because I have to be completely grain-free, aside from dairy and soy-free.

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Basically I like that it can be treated on my own without expensive drugs. I like that it can get me out of situations like eating gross storebought cake at work without hurting anyone's feelings.

I don't like that it makes traveling a pain. That outings with friends always involve a big debate about where I can and can't eat. I especially don't like that when my baby nephews toddle up with cookie crumbs all over their hands and face I have to reject their hugs and kisses.

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I like that it has forced me to go out of my way to try new things and not fall into a "standard american diet" rut. It means that going dairy free was much easier, cooking for my picky husband is much easier, making modifications for other dietary issues (baby, hubby's high blood pressure, vegetarian friends, etc.) is much easier.

The rest of it, I'm fairly ambivalent about. It is what it is.

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Some days I like it, some days it's a nightmare. Just depends on the situation and my mood I guess. I like being healthy. I like cooking. I like trying new foods. I don't like the inconvience. I don't like the social limitations. I REALLY don't like that the smallest amount of CC can make me sick for close to a week.

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I agree with many of the above posters. This has forced me to really look at the American Diet. Because my diet was so "limited" (or so I thought) it ended up opening up a variety of yummy food I never considered. I've learned so much about eating organic, non processed food. I'm amazed that so many of my physical symptoms can be completely managed without drugs, just food and exercise. I in my heart believe that most of the population is walking around feeling like crap all the time and calling it normal. Until my body was clean I didn't realize I felt absolutely, well, like crap for probably a good decade. I feel years younger.

So it's totally inconvenient, has made traveling a scary ordeal...but I love feeling good and eating well.

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I figure we are all made the way we are for a reason. And we need to accept that there is a reason for it and it is for the good. We may not understand it, but that's ok. We is just people after all. My cousin is unable to walk since birth, he is studying to be a teacher, and my ex has a son who can't walk. I've had friends who were blind, and I know a woman who is a quadraplegic and runs an IT department for the Navy and comes to work everyday in a wheelchair. She can't even drive. I like that I am not any of those people, even though they are actually amazing and wonderful people.

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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.

^^^^^^Agreed.

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As far as health problems go, it's not too bad. At least diet treats it. I don't feel like I'm missing out on anything important in life now that I'm gluten-free. If I could snap my fingers and not be celiac, I definitely would.

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Almost age 60 and only 7 months celiac. Do I like it? hmmm Some days I hate it and other days I don't mind so much. Each day I think it gets a tad easier. What I do like is that for the first time in my life I feel healthy and am eating healthy. I am enjoying trying new foods and (on some days!!) learning to cook. Overall - I don't like it and I don't hate it. It is as it is. Hey - we're all special!!! :o

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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, I was the same when I got my gene test results. I know I can't eat gluten, it would have been nice to have a concrete reason why. Oh well, I'm just waiting for science to catch up with how I feel.

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    • I think the idea of grinding your own at home stems from the thought that flavored coffees might be ground on the same machines.  The grinders in the grocery are not cleaned between uses.  However, I have not found a flavored coffee bean that had gluten, so it's probably not a real concern.  For coffee that comes from a factory ground, I wouldn't worry at all.   Machines would be cleaned between flavors and nothing but coffee could be made on the machines or even in the same building ( everything made would taste/ smell like coffee). if you still have doubts - I went to the International Celiac Disease Symposium a few years back.  This is held every few years in different countries for medical professionals that study and treat Celiac.  They present research, etc.  All food served was gluten-free.  We drank a lot of plain, already ground, coffee!  A lot!   Coffee is not on any lists as a gluten containing food.  Talking legitimate organizations - not some blogger or pseudo- science website.   After all this, if you still doubt that coffee is gluten free...... Then don't drink it!  It leaves more for me!    
    • To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps".  You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others  wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
    • Now that my initial rage has calmed a tad.... your daughter has to fulfill 4 out of 5 of the diagnostic criteria. Second opinion can do a gene test. If positive, then she will have4 out of 5 of the dx criteria to dx without a positive biopsy. See: http://www.gastro.org/news_items/a-biopsy-should-not-be-required-to-make-the-diagnosis which says in part: The presence of signs and symptoms compatible with celiac disease. Positive serology screening (high serum levels of anti-TTG and/or EMA). Presence of the predisposing genes HLA-DQ2 and/or –DQ8. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.   Also see: http://www.tenderfoodie.com/blog/2014/5/1/dr-fasano-on-new-gut-autoimmune-research-autism-clearing-up.html She can get a dx after her symptoms resolve on a gluten-free diet!
    • OMG!!!! The doc wants her to get sicker & sicker & do further damage so he can diagnose her? Don't do me any favors doc!!! I'm so spitting med right now I can't even speak! Find a new doc, take the records & get a second opinion. Maybe the next doc will have a freaking brain & dx your daughter. She should be dx'd! This is absurd in the extreme. The very least that should happen is the doc give her a dx now & then in a year or 2 have her do a gluten challenge & do a biopsy all over again but seriously, that would be just as cruel as what he's doing now. He's an ASS!
    • Celiac disease may lead to a host of other inflammatory, gluten-related ... Fortunately, Diet Doc offers gluten-free diet plans which are customized to ... View the full article
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