Jump to content

Follow Us:  Twitter Facebook RSS Feed            




   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Celiac.com Sponsor:                                    


Photo
- - - - -

Newly Diagnosed, Questions

celiac

  • Please log in to reply

18 replies to this topic

#1 Brian Jackson

 
Brian Jackson

    New Community Member

  • Advanced Members
  • Pip
  • 6 posts
 

Posted 22 July 2014 - 05:41 PM

Hello everyone,

 

Glad to have found the forum.

 

I am 27 years old and have been having stomache pain since April 2014. I was diagnosed with Celiac from blood test on July 3rd, 2014.  I realize I might still need to get a intestinal biopsy but my doctor said first that I needed to go completely gluten-free and take probiotics... (florastor)

 

So the very first week going gluten-free was like heaven. 2 days after going gluten-free I felt great. Stomach felt normal, etc... But after that first week my symptoms seem to come back full force and even worse. It is now July 22 and I am having very few good days. From reading other posts on here I realize this probably isn't a long enough time to determine anything if my gut is healing (I think I am one of the lucky ones because I never had stomach pain or any digestive issues prior to April 2014. I am hoping that means my gut isn't too badly damaged).

Did anyone else have a period of "amazing" right after going gluten-free and then it actually get worse?

 

The Big D and stomach pain are my two biggest things I am dealing with right now.

 

Does sugar/soda effect anyone else? I am really trying to determine what causes me to feel bad, but then again maybe it is too soon and I will just have good and bad days.

I have cut out soda for right now which is very hard since I work late into the night. But maybe that isn't the problem.

 

I have been eating some gluten-free products and a lot salads... I have been 100% gluten-free since July 4th. I am trying to go completely organic but baby steps.

 

I am starting a food journal to try and see if I can determine what causes worse days.

 

Any other advice?

 

Thanks everyone.


Edited by Brian Jackson, 22 July 2014 - 06:17 PM.

  • 0

Celiac.com Sponsor:

#2 beth01

 
beth01

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 453 posts
 

Posted 22 July 2014 - 06:37 PM

Read the newbie thread and learn about cross contamination.  I wouldn't go out to eat to much until you do some research about the places to go in your area that other people trust. Don't go out to eat on a busy night and think you aren't going to get cc'd.  Try to call ahead and talk to a manager first too.  I just don't go out to eat except for my friend's place.  He takes good care of me.

 

Is seems the first year is the hardest for feeling better, there are ups and downs.  Don't be too hard on yourself, it's difficult at first and mistakes happen.  With food it seems like too much of one thing is always too much.  I have problems if I eat too much sugar, or too many foods that are hard to digest.  Salads are a big one for me.  I also stay away from a lot of processed foods.  There is just too much healing that needs to go on.

 

Make sure you get your thyroid tested and tested for deficiencies.  They seem rather common from malabsorption issues.  Get good follow up care, it makes a difference.   

 

Gluten hides in everything, make ups, lip gloss, shampoos, tooth paste, check every thing that goes in your mouth. If you have a significant other make sure they are brushing their teeth really well if they are eating gluten, my boyfriend has glutened me kissing before.

 

Good Luck. Have any questions ask away, people are awesome on here.


  • 0
Diagnosed April 7th 2014

#3 kareng

 
kareng

    HO! HO! HO!

  • Moderators
  • PipPipPipPipPipPip
  • 14,317 posts
 

Posted 22 July 2014 - 06:43 PM

I'm psychic - let me guess your next question. What, who or where is this "Newbie Thread"? :)

http://www.celiac.co...01/#entry913144




Ok.....maybe not psychic .... Probably psychotic?.... Possibly just seen this before? Anyway... welcome to the club!
  • 0

santa-dance.gif

 

Once again, we come to the Holiday Season, a deeply religious time that each of us observes, in his own way, by going to the mall of his choice. - Dave Barry
 
“The main reason Santa is so jolly is because he knows where all the bad girls live.”  - George Carlin
 
“One can never have enough socks," said Dumbledore. "Another Christmas has come and gone and I didn't get a single pair. People will insist on giving me books.”  - J.K. Rowling, Harry Potter and The Sorcerer's Stone
 
 
 
 
 

 


#4 beth01

 
beth01

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 453 posts
 

Posted 22 July 2014 - 06:47 PM

Sorry Karen, I would have posted the link but for some reason I can't quote or post links on here.  Been really driving me nuts lol


  • 0
Diagnosed April 7th 2014

#5 kareng

 
kareng

    HO! HO! HO!

  • Moderators
  • PipPipPipPipPipPip
  • 14,317 posts
 

Posted 22 July 2014 - 06:49 PM

Hello everyone,
 
Glad to have found the forum.
 
I am 27 years old and have been having stomache pain since April 2014. I was diagnosed with Celiac from blood test on July 3rd, 2014.  I realize I might still need to get a intestinal biopsy but my doctor said first that I needed to go completely gluten-free and take probiotics... (florastor)
 
So the very first week going gluten-free was like heaven. 2 days after going gluten-free I felt great. Stomach felt normal, etc... But after that first week my symptoms seem to come back full force and even worse. It is now July 22 and I am having very few good days. From reading other posts on here I realize this probably isn't a long enough time to determine anything if my gut is healing (I think I am one of the lucky ones because I never had stomach pain or any digestive issues prior to April 2014. I am hoping that means my gut isn't too badly damaged).
Did anyone else have a period of "amazing" right after going gluten-free and then it actually get worse?
 
The Big D and stomach pain are my two biggest things I am dealing with right now.
 
Does sugar/soda effect anyone else? I am really trying to determine what causes me to feel bad, but then again maybe it is too soon and I will just have good and bad days.
I have cut out soda for right now which is very hard since I work late into the night. But maybe that isn't the problem.
 
I have been eating some gluten-free products and a lot salads... I have been 100% gluten-free since July 4th. I am trying to go completely organic but baby steps.
 
I am starting a food journal to try and see if I can determine what causes worse days.
 
Any other advice?
 
Thanks everyone.


Oh..wait...if you are still testing ( endoscopy) you need to continue to eat gluten. Would be horrible to be gluten-free for 3 months, get an endoscopy and have a lot of healed areas that they biopsy and tell you " no celiac"!


http://www.curecelia...-celiac-disease
  • 1

santa-dance.gif

 

Once again, we come to the Holiday Season, a deeply religious time that each of us observes, in his own way, by going to the mall of his choice. - Dave Barry
 
“The main reason Santa is so jolly is because he knows where all the bad girls live.”  - George Carlin
 
“One can never have enough socks," said Dumbledore. "Another Christmas has come and gone and I didn't get a single pair. People will insist on giving me books.”  - J.K. Rowling, Harry Potter and The Sorcerer's Stone
 
 
 
 
 

 


#6 LSS

 
LSS

    New Community Member

  • Members
  • Pip
  • 2 posts
 

Posted 22 July 2014 - 06:50 PM

Hello everyone,

 

Glad to have found the forum.

 

I am 27 years old and have been having stomache pain since April 2014. I was diagnosed with Celiac from blood test on July 3rd, 2014.  I realize I might still need to get a intestinal biopsy but my doctor said first that I needed to go completely gluten-free and take probiotics... (florastor)

 

So the very first week going gluten-free was like heaven. 2 days after going gluten-free I felt great. Stomach felt normal, etc... But after that first week my symptoms seem to come back full force and even worse. It is now July 22 and I am having very few good days. From reading other posts on here I realize this probably isn't a long enough time to determine anything if my gut is healing (I think I am one of the lucky ones because I never had stomach pain or any digestive issues prior to April 2014. I am hoping that means my gut isn't too badly damaged).

Did anyone else have a period of "amazing" right after going gluten-free and then it actually get worse?

 

The Big D and stomach pain are my two biggest things I am dealing with right now.

 

Does sugar/soda effect anyone else? I am really trying to determine what causes me to feel bad, but then again maybe it is too soon and I will just have good and bad days.

I have cut out soda for right now which is very hard since I work late into the night. But maybe that isn't the problem.

 

I have been eating some gluten-free products and a lot salads... I have been 100% gluten-free since July 4th. I am trying to go completely organic but baby steps.

 

I am starting a food journal to try and see if I can determine what causes worse days.

 

Any other advice?

 

Thanks everyone.

I am surprised your doctor told you to go gluten free before your biopsy...my doctor told me the exact opposite. He said the disease needed to be active for accurate results. Good luck!


  • 0

#7 BlessedMommy

 
BlessedMommy

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,368 posts
 

Posted 22 July 2014 - 06:50 PM

OP, if you think that you're going to want to get an endoscopy done, I would schedule one ASAP.

 

After you've been on the gluten free diet for awhile, it usually takes a gluten challenge in order to get accurate results and that's generally the last thing that a newly dx'ed person would want to do, especially if they are improving on the gluten-free diet. 

 

ETA: Looks like kareng and I posted at the same time.


  • 0

~Ruth

Gluten free since 2/14/2010 after suffering a rare and serious complication from my gluten challenge

 

 

 

 

 

 


#8 beth01

 
beth01

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 453 posts
 

Posted 22 July 2014 - 06:52 PM

I am glad you guys caught that, this brain fog is killing me!


  • 0
Diagnosed April 7th 2014

#9 kareng

 
kareng

    HO! HO! HO!

  • Moderators
  • PipPipPipPipPipPip
  • 14,317 posts
 

Posted 22 July 2014 - 06:52 PM

Sorry Karen, I would have posted the link but for some reason I can't quote or post links on here.  Been really driving me nuts lol


Doesn't seem to work in Internet Explorer. I have been told, by high school,and college computer science people that IE is going away & not updating home users?. I try to use safari ( iPad) or Google Chrome when dealing with the forum.
  • 0

santa-dance.gif

 

Once again, we come to the Holiday Season, a deeply religious time that each of us observes, in his own way, by going to the mall of his choice. - Dave Barry
 
“The main reason Santa is so jolly is because he knows where all the bad girls live.”  - George Carlin
 
“One can never have enough socks," said Dumbledore. "Another Christmas has come and gone and I didn't get a single pair. People will insist on giving me books.”  - J.K. Rowling, Harry Potter and The Sorcerer's Stone
 
 
 
 
 

 


#10 beth01

 
beth01

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 453 posts
 

Posted 22 July 2014 - 06:53 PM

Thank you, I will try that.


  • 0
Diagnosed April 7th 2014

#11 kareng

 
kareng

    HO! HO! HO!

  • Moderators
  • PipPipPipPipPipPip
  • 14,317 posts
 

Posted 22 July 2014 - 06:53 PM

OP, if you think that you're going to want to get an endoscopy done, I would schedule one ASAP.
 
After you've been on the gluten free diet for awhile, it usually takes a gluten challenge in order to get accurate results and that's generally the last thing that a newly dx'ed person would want to do, especially if they are improving on the gluten-free diet. 
 
ETA: Looks like kareng and I posted at the same time.

  

I am glad you guys caught that, this brain fog is killing me!



1...2..3... jinx! We are all talking at once! :)
  • 0

santa-dance.gif

 

Once again, we come to the Holiday Season, a deeply religious time that each of us observes, in his own way, by going to the mall of his choice. - Dave Barry
 
“The main reason Santa is so jolly is because he knows where all the bad girls live.”  - George Carlin
 
“One can never have enough socks," said Dumbledore. "Another Christmas has come and gone and I didn't get a single pair. People will insist on giving me books.”  - J.K. Rowling, Harry Potter and The Sorcerer's Stone
 
 
 
 
 

 


#12 kareng

 
kareng

    HO! HO! HO!

  • Moderators
  • PipPipPipPipPipPip
  • 14,317 posts
 

Posted 22 July 2014 - 06:56 PM

I am surprised your doctor told you to go gluten free before your biopsy...my doctor told me the exact opposite. He said the disease needed to be active for accurate results. Good luck!


Good doctor!
  • 0

santa-dance.gif

 

Once again, we come to the Holiday Season, a deeply religious time that each of us observes, in his own way, by going to the mall of his choice. - Dave Barry
 
“The main reason Santa is so jolly is because he knows where all the bad girls live.”  - George Carlin
 
“One can never have enough socks," said Dumbledore. "Another Christmas has come and gone and I didn't get a single pair. People will insist on giving me books.”  - J.K. Rowling, Harry Potter and The Sorcerer's Stone
 
 
 
 
 

 


#13 Brian Jackson

 
Brian Jackson

    New Community Member

  • Advanced Members
  • Pip
  • 6 posts
 

Posted 22 July 2014 - 07:00 PM

Thanks everyone. So does everyone recommend I get a biopsy? I realize it is kind of late now. The doctor said from the results of the blood test that it was "very positive" (whatever that means) for celiac and didn't need one. I am going gluten-free now no matter what... I have done enough reading to know how much healthier it is and even my parents have started eating gluten-free after hearing about the trouble I have been having.

 

And that one week of amazing that I had, I felt like a whole new person... I think a big problem I have is I am not eating enough fresh fruits/veggies. I need to work harder on that.


  • 0

#14 Brian Jackson

 
Brian Jackson

    New Community Member

  • Advanced Members
  • Pip
  • 6 posts
 

Posted 22 July 2014 - 07:04 PM

Also, some people have mentioned withdrawal symptoms after going gluten-free... I am wondering maybe that is part of why I felt really good and then got worse?


  • 0

#15 BlessedMommy

 
BlessedMommy

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,368 posts
 

Posted 22 July 2014 - 07:17 PM

It is up to you whether or not to get a biopsy.

 

Some people on here have done them a month or two after going gluten free and got positives--after all the damage doesn't heal overnight. But definitely the sooner the better!


  • 0

~Ruth

Gluten free since 2/14/2010 after suffering a rare and serious complication from my gluten challenge

 

 

 

 

 

 






0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: