Still A Bit Confused By Celiac Disease (Also: Celiac Petition)celiac disease petition celiac disease confusion
Posted 07 December 2012 - 10:46 PM
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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Posted 08 December 2012 - 06:51 AM
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?
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
10/27/09 diagnosed fibromyalgia - supplemented with amino acids - improvement followed by substantial deterioration
maybe one good hour per day for ~17 months
8/10/11 - Elimination Diet for Autoimmune Disease - incredible improvement along with clear reactions to most high lectin foods
only remaining symptom - severe heat intolerance / reaction to heat, humidity and exercise
Tomato, Pepper, Potato, Peanut, Soy, Bean, Pea, Citrus, Pineapple, Avocado, Shellfish, Dairy, Grain, Nut and Seed FREE
3/1/12 - Horrible flare -- same ol' symptoms but worse ~ 7/1/12 - Endo: Active Celiac 3+ years - as gluten-free as humanly possible.
11/15/12 - Improving once again - Almonds back - Eggs gone
12/1/12 - Histamine containing and inducing foods FREE - finally the last piece of the puzzle (I hope) -- the cause of my heat/exercise "allergy"...
...this was one of my earliest symptoms as a child -- the enzyme (DAO) needed to regulate histamine is created in the small intestine.
6/1/13 - Slowly trialing a few of the items above - haven't gotten any back, but some reactions have been less severe
If you have read this far - hang in there - obtaining health with any AI is a marathon, not a sprint!
This stubbornly tenacious feisty optimist is vertical once again.
Celiac.com - Celiac Disease Board Moderator
Posted 08 December 2012 - 05:56 PM
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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