Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Looking Forward To Answers

Valerie2622

Recommended Posts

Valerie2622 Apprentice
Valerie2622
Posted

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. :)

 

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


LauraTX Rising Star
LauraTX
Posted

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.

 (  Open Original Shared Link     and Open Original Shared Link 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

Valerie2622 Apprentice
Valerie2622
Posted
  • Author

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?

LauraTX Rising Star
LauraTX
Posted

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.  

user001 Contributor
user001
Posted

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.

Valerie2622 Apprentice
Valerie2622
Posted
  • Author

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)

user001 Contributor
user001
Posted

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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Valerie2622 Apprentice
Valerie2622
Posted
  • Author

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.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,118
    • Most Online (within 30 mins)
      7,748
    Cwbtex
    Newest Member
    Cwbtex
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Colleen H
      Gluten related ??

      By Colleen H · Posted

      I did ... But aren't we going to be vitamin deficienct if we are not eating due to being sick ?? If the food we eat is gluten free and we have other sensitivities , how do we get out of the cycle??  Thank you 
    • Colleen H
      Heat intolerant... Yikes

      By Colleen H · Posted

      Anyone else get pins and needles. ??? Burning feeling ? Heat makes it so much worse 😔  Winter is here.  I had to lower my thermostat because I couldn't take that hot air feeling 😔  Hopefully it goes away soon     
    • trents
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By trents · Posted

      I assume that you already know that genetic testing for celiac disease cannot be used to confirm a celiac diagnosis. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. It can be used to rule out celiac disease with a high degree of confidence, however, in the case where the genetic testing is negative for the genes. Until and unless you are actually diagnosed with celiac disease I would not raise this as an issue with family. However, if you are diagnosed with celiac disease through blood antibody testing and/or endoscopy with positive biopsy I would suggest you encourage first degree relatives to also purse testing because there is a significant chance (somewhere betwee 10% and almost 50%, depending on which studies you reference) that they will also have or will develop active celiac disease. Often, there are symptoms are absent or very minor until damage to the small bowel lining or other body systems becomes significant so be prepared that they may blow you off. We call this "silent celiac disease". 
    • trents
      GI DX celiac despite neg serology and no biopsy

      By trents · Posted

      If you were off gluten for two months that would have been long enough to invalidate the celiac blood antibody testing. Many people make the same mistake. They experiment with the gluten free diet before seeking formal testing. Once you remove gluten from the diet the antibodies stop being produced and those that are already in circulation begin to be removed and often drop below detectable levels. To pursue valid testing for celiac disease you would need to resume gluten consumption equivalent to the amount found in 4-6 slices of wheat bread daily for at least two weeks, preferably longer. These are the most recent guidelines for the "gluten challenge". Without formal testing there is no way to distinguish between celiac disease and gluten sensitivity since their symptoms overlap. However, celiac disease is an autoimmune disorder that damages the small bowel lining, not true of gluten sensitivity. There is no test available for gluten sensitivity so celiac disease must first be ruled out. By the way, elevated liver enzymes was what led to my celiac diagnosis almost 25 years ago.
    • trents
      High DGP-A with normal IGA

      By trents · Posted

      Then it does not seem to me that a gluten-related disorder is at the heart of your problems, unless that is, you have refractory celiac disease. But you did not answer my question about how long you had been eating gluten free before you had the blood antibody test for celiac disease done.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.