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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

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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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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.cureceliacdisease.org/archives/faq/what-is-an-endoscopic-biopsy     and http://www.cureceliacdisease.org/medical-professionals/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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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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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 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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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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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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