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Looking Forward To Answers

prediagnosis autism endoscopy colonoscopy constipation diarrhea fatigue anxiety depression pain

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7 replies to this topic

#1 Valerie2622

 
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Posted 08 July 2014 - 11:42 AM

Hi everyone. I'm a nineteen year old female.

A year ago I began to get lots of stomach pain, constipation, and diarrhea. I also experienced an increase in fatigue, anxiety, and depression. I also have autism, diagnosed at age thirteen.
A few weeks ago I got blood test results that strongly suggested the possibility of having Celiac disease.
My endoscopy and colonoscopy are scheduled for July 11. I'm so nervous. Hoping the doctor will be able to tell me that they know what's wrong.

Looking for support, but if anyone else is going through similar stuff, feel free to message me or post on this thread- either way. :)

 


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#2 LauraTX

 
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Posted 08 July 2014 - 12:37 PM

Welcome, Valerie!

It sounds like you may have a Celiac diagnosis coming your way.  Before your endoscopy, go ahead and ask your doctor how many biopsies he/she will be taking of the small intestine.  The more the better- the University of Chicago Celiac Disease Center recommends 6.

 (  http://www.curecelia...doscopic-biopsy     and http://www.curecelia...guide/diagnosis for your reading pleasure)

 

Once you hear back about the results, let us know!  You may want to start reading through things now, and if you do indeed need to make the change to a gluten-free diet, we will be here to answer any questions you and your family have!  :)  And don't worry about the endoscopy/colonoscopy.  Usually they put you to sleep and you wake up like nothing happened.

 

Laura


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I am my husband's "Silly Yak Girl" :)
I was diagnosed with Celiac Disease in January 2013. I also have Lupus and Common Variable Immunodeficiency(CVID) for which I am on IVIG.

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#3 Valerie2622

 
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Posted 08 July 2014 - 12:54 PM

Thank you so much for the reply- the number of biopsies is not something I had thought about. I'll make sure to check in with them about that.

I'll keep people updated. I did go to a book store near me and I discovered a book called Jennifer's Way that talks about celiac disease. So I bought that and have begun reading it. Has anyone else ever read that book?


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#4 LauraTX

 
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Posted 08 July 2014 - 01:07 PM

I have heard her book is good, but I haven't read it.  Another good one that came out recently and many people on here have been recommending is Gluten Freedom by Dr. Alessio Fasano.  If you do go on a gluten-free diet, I highly highly recommend the Americas Test Kitchen gluten-free cookbook.  It is amazing and explains things very well.  


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I am my husband's "Silly Yak Girl" :)
I was diagnosed with Celiac Disease in January 2013. I also have Lupus and Common Variable Immunodeficiency(CVID) for which I am on IVIG.

Celiac.com - Celiac Disease Board Moderator

#5 user001

 
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Posted 08 July 2014 - 03:39 PM

I got the book on my kindle, I read it in 2 evenings, I COULDN'T PUT IT DOWN. I felt like I was reading my own story, as Im sure many others would feel. Alot of helpful information, but more than anything it made me feel like I wasn't a freak and I wasn't the only one who had such a weird childhood due to being undiagnosed celiac.

 

The endoscopy is a breeze really. I am deathly afraid of needles, so the IV was the worst part. I just took a little nap and it was all over, my throat was a bit scratchy but that was it. I was really hungry because I couldnt eat that morning. The post opp nurse gave me gluteny crackers and cookies when i woke up, even though i told the pre op nurse and intake nurse that i cant have gluten. Iam glad i brought my own snack. You might want to bring a jello or something like that. I brought jello and rice crackers with hummus.


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Beef and pork free due to intolerance since 2005, Gluten free since March 2014, Coffee free due to a developed intolerance June 2014, Egg free due to a developed intolerance August 2014
Misdiagnosed since 2000 with chronic fatigue syndrome, major depression and anxiety disorder.
Requested doc test for Celiac disease in April 2014.
Blood test positive for  Celiac disease May 2014.

Celiac Dx confirmed via small intestine biopsy 6/26/14
Fatigue,.depression, anxiety, daily headaches, and a laundry list of other symptoms have diminished slowly since I stopped eating gluten.

Who knows how much longer I would have suffered if I continued to rely on doctors to think of testing me for celiac disease.

BE AN ADVOCATE FOR YOUR OWN HEALTH!


#6 Valerie2622

 
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Posted 09 July 2014 - 03:35 AM

Laura-    I will absolutely look into the books you suggested. It's something to do while waiting for answers (though hopefully the doctors will be able to tell me Friday. Do the doctors sometimes make people wait until they have talked with other doctors or something?)

 

To user001-  I totally agree- Jennifer's Way was that type of book that hits so close to home, and now I don't feel like a weirdo for requesting tests instead of waiting around for doctors to telll me what to do. About the bring a snack along thing, WOW that's an amazing idea. A very valid point- otherwise the nurse would be telling you to eat exactly what you shouldn't eat.

Thanks everyone for the great replies- keep them coming- it's so nice to finally have people to relate to in this way. (some of my friends that I see in my day to day life think I've lost my marbles)


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#7 user001

 
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Posted 09 July 2014 - 04:24 AM

Took 10 days to get results back. I assume it's usually quicker.


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Beef and pork free due to intolerance since 2005, Gluten free since March 2014, Coffee free due to a developed intolerance June 2014, Egg free due to a developed intolerance August 2014
Misdiagnosed since 2000 with chronic fatigue syndrome, major depression and anxiety disorder.
Requested doc test for Celiac disease in April 2014.
Blood test positive for  Celiac disease May 2014.

Celiac Dx confirmed via small intestine biopsy 6/26/14
Fatigue,.depression, anxiety, daily headaches, and a laundry list of other symptoms have diminished slowly since I stopped eating gluten.

Who knows how much longer I would have suffered if I continued to rely on doctors to think of testing me for celiac disease.

BE AN ADVOCATE FOR YOUR OWN HEALTH!


#8 Valerie2622

 
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Posted 13 July 2014 - 03:49 AM

Update: the endoscopy and colonoscopy went smoothly. Results will be here in 7 days, so this Friday will be the big day! Thanks to all who have commented on this thread so far. I bought Gluten Freedom and it is a very insightful book- definitely worth every penny.
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