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How/when Were You First Diagnosed With Celiac?


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#1 revolverblue85

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Posted 30 December 2012 - 06:53 AM

I was literally just diagnosed this past Friday. After strong abdominal pains about once a month for the past year started occurring, MY WIFE :) made my stubborn butt go to the emergency room. After several hours there, blood tests, and an ultrasound they said I have peptic ulcer disease and I needed to change my diet up badly. They sent me to a Gastro specialist who confirmed it and asked if I'd like to have the endoscopy procedure done just to have documentation and know 100% it was just that. I agreed just in case something else was wrong. I came out of the procedure and my doctor informed me that I had several tiny ulcers that had healed and that they took a biopsy of something that he thought was just a bacteria that shouldn't be a problem to get rid of. A week later I got the call to come in for more blood work due to the fact that my results of the biopsy looked like possible Celiac disease. It was confirmed on Friday and now we are here.

Probably the hardest thing to ever happen to me considering I've given up soda, caffeine, alcohol, I don't eat my vegetables like I should. I am just thankful I went to the doctor that day for my stomach pains because I believe I've had this for years just never diagnosed. i am always fatigued no matter how much I sleep, and I always thought my chronic back and joint pains were from the brick laying.

Just needed to vent, thanks for listening and I know it will get better.
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#2 GottaSki

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Posted 30 December 2012 - 07:35 AM

I was literally just diagnosed this past Friday. After strong abdominal pains about once a month for the past year started occurring, MY WIFE :) made my stubborn butt go to the emergency room. After several hours there, blood tests, and an ultrasound they said I have peptic ulcer disease and I needed to change my diet up badly. They sent me to a Gastro specialist who confirmed it and asked if I'd like to have the endoscopy procedure done just to have documentation and know 100% it was just that. I agreed just in case something else was wrong. I came out of the procedure and my doctor informed me that I had several tiny ulcers that had healed and that they took a biopsy of something that he thought was just a bacteria that shouldn't be a problem to get rid of. A week later I got the call to come in for more blood work due to the fact that my results of the biopsy looked like possible Celiac disease. It was confirmed on Friday and now we are here.

Probably the hardest thing to ever happen to me considering I've given up soda, caffeine, alcohol, I don't eat my vegetables like I should. I am just thankful I went to the doctor that day for my stomach pains because I believe I've had this for years just never diagnosed. i am always fatigued no matter how much I sleep, and I always thought my chronic back and joint pains were from the brick laying.

Just needed to vent, thanks for listening and I know it will get better.


This is the perfect place to vent -- we all have a time or twelve ;)

Read as much as you can, ask questions or simply vent - we get it.
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-Lisa



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


#3 nvsmom

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Posted 30 December 2012 - 08:44 PM

That's great you've found the cause... I hope you have a speedy recovery.

Hang in there through the first couple of months. They are the toughest as many of us needed to learn new ways to eat, and those first two weeks can feel lousy if you hit withdrawl. It's worth it in the end if you stick it out. Good luck!
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Nicole chicken1.gif

"Acceptance is the key to happiness."

ITP - 1993
Celiac - June, 2012
Hypothyroid - August, 2012

CANADIAN


#4 Adalaide

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Posted 30 December 2012 - 09:13 PM

Much like you I had that BLAM! shocker when it wasn't even hinted at by doctors. I was having issues with my gallbladder and my insurance wouldn't cover what they called an elective surgery to have it removed. This led to repeat trips to the ER when the pain was so bad that narcotics wouldn't even touch it. Eventually blood tests showed that I my liver enzymes were out of control, hinting I had a stone blocking my duct and that I had to have emergency surgery. Within a few hours I was sans gallbladder but sure enough I had a stone that they couldn't get out and needed an ERCP that was scheduled for the following morning. A year later I still want to clock the sadist that decided that no matter the circumstances you MUST be laying on your stomach for that procedure. Anywho, a week later (which was actually a year ago today) I got my call saying gratz!!! you have celiac. <_< I was so unexcited then. Looking back, the string of events it took to get to diagnosis and seeing now that I was undiagnosed for 3 decades I can only be thankful for a GI that got in there and knew that my guts looked wrong.

It is true, getting started is rough but yes, hang in there. It gets easier and a year from now while you may not be all sunshine and rainbows, know that there is life out from under that rainy cloud. The best is that I no longer sleep 16-20 hours a day! I feel like a real human being again, which is quite splendiferous. You'll get there, just have patience.
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Gluten free January 2012.

Tyramine free June 2012 - slowly getting a few foods back at a time.... scratch that

 

Low Histamine April 2013 - I swear this better be the last time I have to restrict my diet because giving up chocolate is the final straw

 

Iodine free briefly fall 2012

 

I like nonsense, it wakes up the brain cells. Fantasy is a necessary ingredient in living. It's a way of looking at life through the wrong end of a telescope, which is what I do, and that enables you to laugh at life's realities. -- Theodor Geisel



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