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Still A Bit Confused By Celiac Disease (Also: Celiac Petition)

celiac disease petition celiac disease confusion

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Posted 07 December 2012 - 10:46 PM

I've been researching Celiac Disease like mad and I am still, admittedly, confused by some of what is said about this illness. This recent video and petition discusses the confusion about Celiac Disease (video below). And by the way, I've been treated this way countless times by doctors, so sign the petition and watch the video by clicking here. I also saw my GI doctor for the first time and he treated my Celiac Disease by handing me a pamphlet and told me to stay away from Gluten. So I thought, okay. That is simple enough.

From this video with TV Actress Jennifer Esposito says, "...They think you eat a Gluten-free diet and therefore you're better. And that's not the case." I understand that the Gluten-free diet is one of the most important aspects of treatment. My thought was eating Gluten-free would help heal well...mostly everything on its own because that is how it has been explained to me. I suppose I really don't know enough. And the information my GI Doctor gave me was simple, "Eat a Gluten-free diet and you are better." He didn't say anything else...at all.

She also speaks about nerve damage, stomach problems, etc. Does anyone know of other associated with Celiac Disease? Is there a list? And what do I do to get proper diagnoses (of course, see a bettet GI doctor for starters)?

Anyway, I'd like to say it is becoming far too common with how rudely this doctor's treat their patients - or just other people they either don't believe have these ailments or they just don't like. The petition is short of the needed votes, and I have seen Change.org work many times before.

Also, what he said at the end about stress and that it obviously took a tole completely overrided her and her doctor's explanation of Celiac Disease. She explained that Celiac Disease was the culprit of her knees giving out (exhastion). He explained and finalized (he is the doctor!) that stress was the culprit. I don't know if this was policital, to downplay Celiac Disease, or what was going on, but it is inexcusable.

Thanks for your help.
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    "The past is the past...I've got places to be."

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Posted 08 December 2012 - 06:51 AM

Hi Robby-

Here is the University of Chicago's complete list of symptoms that are associated with Celiac Disease. The malabsorption of nutrients caused by celiac damage of the small intestine can effect any system in the body -- the human body will compensate when missing nutrients until it can no longer function. This is why those of us that went undiagnosed, misdiagnosed or dismissed for decades are often in very poor health by the time we get diagnosed.

Keep reading, researching and learning - I remember well when I realized that simply removing gluten wasn't going to be enough to get my body to heal, but healing is possible given time and determination.

How were you originally diagnosed/told to remove gluten - based on blood work? endo? symptoms alone?
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Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS


ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)



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Posted 08 December 2012 - 05:56 PM

I was diagnosed by an Allergist who did blood work on me. My Iga level was 138.09/20, which I have asked out here and have heard that is pretty high. From here on, I've just been eating Gluten-free but still feel absolutely terrible. Something is still wrong and I have seen worthless doctors, which is eating up a lot of time and money.

I definitely have the determination. Seems like it is lacking in many of the doctors I have seen.

Thanks for the reply!
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