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

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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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    • First, do you have celiac disease?  Have you recently had a celiac antibodies follow-up blood test panel to see if gluten has been actually getting into your diet by accident or through cross contamination?  If you haven't had the test, you should ask your doctor for one.  You could also also ask for a follow-up endoscopy to see if you intestines have truly healed.  This will rule out if gluten is really the problem.    If you don't have celiac, I assume you have Non-celiac gluten Intolerance because no one would stick to the gluten-free diet for six years unless you have had reductions in symptoms.  There is no test for NCGI unfortunately.  So, it is hard to say if gluten has been sneaking into your diet.  You really are going to have to try to figure out if you are getting gluten into your diet.  If gluten is not the problem, then your doctor needs to check you for other issues, like SIBO. There is a test to check for SIBO.  Has this been done?   Once a celiac, always a celiac.  There is no cure for celiac disease except to remain on a gluten free diet for life.  I am not sure about NCGI.  Not much research has been done.  Maybe others can chime in?    
    • I am so confused right now.... 6 years ago I went on gluten free diet... after being on it for the first yr I was 100%better up until 5 months ago in got the "flu" the doctors told me to cut out dairy sonic did and my diarrhea  became better but not completely gone would not have it every day tho. I went to the gi doctor and they said to cut out fructose and dairy and keep gluten out... yesterday I went to the dietitian to see what I can eat and she gave me the list for fructose... she said it should have been on a antibiotic for sibo.... eventually I will be able to add dairy back and maybe gluten.... I said how can I add gluten back when this was my first problem... she goes well through fructose goes hand in hand with it... I said with gluten I vomit and am sick for weeks.... fructose isn't that bad I vomit sometimes but I'm not sick for weeks.... I'm just confused on really what is going on and was wondering if you or someone you know had sibo from gluten and or fructose and how Is this all related?
    • I see no one has responded to your query.  Unfortunately I have yet to try making a pie crust.  It was something I never mastered before going gluten free.  Have you looked on Pinterest?  You might find something there.
    • I honestly feel like both doctors think it's all in my head even though there is proof.  Yeah there was a point when I felt crazy.  That was when I was being shuffled from dr to dr being given individual diagnoses of my problems.  None of those diagnoses ever made me get better.  Seriously I was diagnosed with heart palpitations, neurocardiogenic syncope, I was given a butt load of steroids because a dr felt like I was producing too much adrenaline, freaking had a few tell me I was depressed, and the good ol IBS.  It seemed most wanted to push pills.  It's all just ridiculous!
    • I can't believe your doctors!!! You have a daughter who is dx'd already! Yet the ped doesn't want to test your other kids unless you have a dx????!!! Are you kidding me???!!! That's absurd!!! They have a first degree relative who has been dx'd with celiac already. There is no need to wait to see what you turn out to be!! And then, and then, and then....don't even get me started on your doctor!!! Does he have brain damage? Oh this is insane & ridiculous!  I have never heard of a disease that doctors are so unwilling to consider or test for OR to diagnose as this one! Usually they are hot to trot to make a dx but say the word celiac & they shake in their boots. Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!!!!!!!!!!!!!!!!!!
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