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How Long Have U Had Cd?


wickedclown

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wickedclown Newbie

hey i was diagnosed with celiac disease april 1999 and i wanted to know how long you ppl have been diagnosed


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minibabe Contributor

I was diagnosed with celiac disease in December of 2004, but I was sick for about 3 years prior

Carriefaith Enthusiast

Almost 14 months!

KaitiUSA Enthusiast

I was diagnosed in January of 2004 but I was sick 2 years prior to that. I have been gluten free about 16 months

tarnalberry Community Regular

I figured it out in 2003, but I don't have many symptoms and I don't think I had it as a child....

celiac3270 Collaborator

Diagnosed in Feb. 2004, so I've been gluten-free for about 14 months...... I've had celiac disease much longer.

flagbabyds Collaborator

So I was diagnosed when I was 20 montsh old in 1992 so that would be 13 years+ :) Long time:)


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stargirl Apprentice

I'm with Kaiti at 16 months but I was sick on off through my childhood.

yllehs91 Apprentice

Diagnosed 9/27/04 but had a few symptoms ever since i was about 3 or so...all the docs said I'd grow out of it....ha--sure ;)

ErraticBinxie Explorer

I am almost 18, have been gluten-free since I was 9.

The funny thing is that I always think about the last gluten thing I ate intentionally when I think about how long I have been gluten-free. I was in fourth grade. I ate some animal crackers. Never again did I intentionally eat gluten. What a lame thing to end my gluten-filled life with huh?

MySuicidalTurtle Enthusiast

I have always had Celiac Disease.

I was diagnosed 2 years ago, though.

VegasCeliacBuckeye Collaborator

I know I'm not a teenager, but I was diagnosed in November of 1997, right in the middle of college.

teeta Newbie

Hello i am almost 17 and was diagnosed when i was 2 by my mother so that is about 15 years

DoctorDave Newbie

Was diagnosed when I was 2 so about 21 years.....

stef-the-kicking-cuty Enthusiast

OK, I'm not a teenager either. Does it count, when you look like one??? :P (hugs to all the baby-faces out there) I'm kind of self-diagnosed. My doc still doesn't really believe it. He's like: 'Ok, you're blood-levels were just slightly elevated and didn't show much and you had no biopsy. But, heck, if you feel better... just do what you want...and when you feel bad come back'. Other than the "Amstel light"-mistake I never felt bad again :P . So this "diagnosis" I got 07/21/04. But I suffered really severe for 7 years until anything came out. I also think, I had it all my life, but not as severe.

ianm Apprentice

I had symptoms that would come and go all of my life. In my mid-20's they started to become really severe. I didn't learn what was wrong until early 2004 at the age of 36 when I tried the Atkins diet. Dozens of doctors never once suggested a food intolerance. Since then my life has changed dramatically for the better. I am not the man I used to be at all and that is a GOOD thing.

kings-kid Newbie

I was diagnosed in 1999. I am also dairy intolerant, and have some problems with fruits as well

CrashLanden7 Newbie

This is my first post on the site, but I've been reading for a while. I live in Wyoming and feel like pretty much a loner up here. I am 20 years old and was diagnosed on my 14th birthday <_< , so... Gluten-Free for almost 7 years.

  • 2 weeks later...
dyingboy Newbie

hey guys i just got diagnosed for celiac today, it kinda sucks because my parents cooked a big meal and i couldnt have it. :blink:

MySuicidalTurtle Enthusiast

I don't think it sucks. You will have to start cooking for yourself then.

My family would ahve their meals and I would make my own. I still make my own but now that my Mom and borther were diagnosed they eat glutenfree, too. I just prefer to cook my own food because I did before.

KaitiUSA Enthusiast
hey guys i just got diagnosed for celiac today, it kinda sucks because my parents cooked a big meal and i couldnt have it. :blink:

We don't have it that bad..we can still have alot of really good foods..you'll get used to it and realize it's not so bad.

explodingmonkey Newbie

sorry for having the rude account name before as "dyingboy" i found it a little offensive

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      Certainly, it would b wise to have a gene test done if your physician is open to it as it would provide some more data to understand what's going on. But keep in mind that the genetic test for celiac disease cannot be used as to diagnose celiac disease, only to establish the potential to develop active celiac disease. About 40% of the general population possess one or both of the primary genes known to be associated with the development of active celiac disease but only about 1% of the population actually develop active celiac disease. So, the gene test is an effective "rule out" tool but not an effective diagnostic tool.
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      So you would be good with the diagnosis and not worry to check genetics etc etc? Appreciate your words!
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      For those who will likely remain gluten-free for life anyway due to well-known symptoms they have when eating gluten, my general advice is to ignore any doctors who push to go through a gluten challenge to get a formal diagnosis--and this is especially true for those who have severe symptoms when they eat gluten. It can take months, or even years to recover from such a challenge, so why do this if you already know that gluten is the culprit and you won't be eating it anyway?  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS--but those in this group will usually have negative tests, or at best, elevated antibodies that don't reach the level of official positive. Unfortunately test results for celiac disease are not always definitive, and many errors can be made when doing an endoscopy for celiac disease, and they can happen in many ways, for example not collecting the samples in the right areas, not collecting enough samples, or not interpreting the results properly and giving a Marsh score.  Many biopsy results can also be borderline, where there may be certain damage that could be associated with celiac disease, but it just doesn't quite reach the level necessary to make a formal diagnosis. The same is true for blood test results. Over the last 10 years or so a new "Weak Positive" range has been created by many labs for antibody results, which can simply lead to confusion (some doctors apparently believe that this means the patient can decide if they want more testing or to go gluten-free). There is no "Weak Negative" category, for example. Many patients are not told to eat gluten daily, lots of it, for the 6-8 week period leading up to their blood test, nor asked whether or not they've been eating gluten. Some patients even report to their doctors that they've been gluten-free for weeks or months before their blood tests, yet their doctors incorrectly say nothing to them about how this can affect their test, and create false negative results. Many people are not routinely given a total IGA blood test when doing a blood screening, which can lead to false negative interpretations if the patient has low IGA. We've seen on this forum many times that some doctors who are not fully up on how interpret the blood test results can tell patients that the don't need to follow a gluten-free diet or get more testing because only 1 of the 2 or 3 tests done in their panel is positive (wrong!), and the other 1 or 2 tests are negative.  Dermatologists often don't know how to do a proper skin biopsy for dermatitis herpetiformis, and when they do it wrongly their patient will continue to suffer with terrible DH itching, and all the risks associated with celiac disease. For many, the DH rash is the only presentation of celiac disease. These patients may end up on strong prescriptions for life to control their itching which also may have many negative side effects, for example Dapsone. Unfortunately many people will continue to suffer needlessly and eat gluten due to these errors in performing or interpreting celiac disease tests, but luckily some will find out about non-celiac gluten sensitivity on their own and go gluten-free and recover from their symptoms. Consider yourself lucky if you've figured out that gluten is the source of your health issues, and you've gone gluten-free, because many people will never figure this out.    
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