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

Is It Worth To Make The Trip To Columbia In Nyc?


blondebombshell

Recommended Posts

blondebombshell Collaborator

well i havent posted in quite some time. i recently had a baby and now im back...and so is the bloating and the hives!

quick background: before i was pregnant i had hives isolated on the legs only, chronic constipation, and would feel like i hadn't slept in days after eating wheat. when i was pregnant i was fine. no hives, able to eat whatever i wanted and had normal bowels.

NOW my 'issue' is back with a vengance.

lethargy, depression, hives, constipation; not sure what to do.

i had an endoscopy and it was negative for celiac. all bloodwork said i didn't have any wheat/gluten issues but when i stopped eating it, felt great.

i would really like to get to the bottom of this once and for all. i am willing to go to columbia; its only about 2 hours from me. think it would help? any thoughts?


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



Celiac.com Sponsor (A8-M):



mushroom Proficient
well i havent posted in quite some time. i recently had a baby and now im back...and so is the bloating and the hives!

quick background: before i was pregnant i had hives isolated on the legs only, chronic constipation, and would feel like i hadn't slept in days after eating wheat. when i was pregnant i was fine. no hives, able to eat whatever i wanted and had normal bowels.

NOW my 'issue' is back with a vengance.

lethargy, depression, hives, constipation; not sure what to do.

i had an endoscopy and it was negative for celiac. all bloodwork said i didn't have any wheat/gluten issues but when i stopped eating it, felt great.

i would really like to get to the bottom of this once and for all. i am willing to go to columbia; its only about 2 hours from me. think it would help? any thoughts?

Your post is a little contradictory on its information, since you first say "all bloodwork said I didn't have any wheat/gluten issues", but your signature block says "bloodwork confirms gluten/egg allergy"

You say you felt great when you stopped eating gluten--does that not give you your answer?? There are many people who test negative for celiac who are gluten intolerant. There is no test for gluten intolerance except trying the diet and seeing if it works. Why waste your money and time travelling to get more negative result tests??

Just my two cents worth.

ENF Enthusiast

I went to The Celiac Disease Center at Columbia University, where I had an endoscopy, bone density test, blood work, and consultation with the dietician.

If you are going to be tested, you'll probably have to go back to eating gluten for the results to be accurate. In your case, I would get the genetic test done first, if you haven't already, which could rule Celiac out with a high degree of certainty. The Center's director, Dr. Peter H.R. Green, has recommended genetic testing for some individuals. It can be done through the mail by several medical labs.

blondebombshell Collaborator
I went to The Celiac Disease Center at Columbia University, where I had an endoscopy, bone density test, blood work, and consultation with the dietician.

If you are going to be tested, you'll probably have to go back to eating gluten for the results to be accurate. In your case, I would get the genetic test done first, if you haven't already, which could rule Celiac out with a high degree of certainty. The Center's director, Dr. Peter H.R. Green, has recommended genetic testing for some individuals.

my bloodwork came back negative. i think its the IGA or something?

i have been eating gluten. when i was pregnant i ate it with no problems and now that i've delivered, my issues are back.

ENF Enthusiast
my bloodwork came back negative. i think its the IGA or something?

i have been eating gluten. when i was pregnant i ate it with no problems and now that i've delivered, my issues are back.

No one can say, because sometimes the blood work is false negative. I think that, in your case, you should first get the gene test before proceeding to make a trip that may not be necessary.

blondebombshell Collaborator
No one can say, because sometimes the blood work is false negative. I think that, in your case, you should first get the gene test before proceeding to make a trip that may not be necessary.

would a regular general practitioner do this?

ENF Enthusiast
would a regular general practitioner do this?

I don't know. I did it through the mail with EnteroLab, a few years ago. Since then, there are other places that you can do it with. I think that it was just a cheek swab, where you scrape off a bit of tissue and send it in. Here's a lab that's advertising on Celiac.com:

Open Original Shared Link


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



Celiac.com Sponsor (A8-M):



momxyz Contributor

my humble two cents worth.

Symptoms of gluten intolerance/celiac disease are highly variable, both in form and severity. and I suspect they can vary with the changing hormonal status of a woman's body. So you may have been able to "get away with" ingesting gluten while pregnant... but your hormonal status has changed and now you have problems...

I agree with mushroom, before you spend the time and money traveling, go gluten free and see.

blondebombshell Collaborator
my humble two cents worth.

Symptoms of gluten intolerance/celiac disease are highly variable, both in form and severity. and I suspect they can vary with the changing hormonal status of a woman's body. So you may have been able to "get away with" ingesting gluten while pregnant... but your hormonal status has changed and now you have problems...

I agree with mushroom, before you spend the time and money traveling, go gluten free and see.

ive gone gluten free and felt great.

i feel like i just want a diagnosis of SOMETHING...anything. i just would like to know what exactly (besides gluten), etc. plus i want to know for my new baby, too.

mushroom Proficient
ive gone gluten free and felt great.

i feel like i just want a diagnosis of SOMETHING...anything. i just would like to know what exactly (besides gluten), etc. plus i want to know for my new baby, too.

If you want to know if you carry a gene that you could pass on to your baby, then I agree with ENF to get the genetic testing done; this will show if you carry a recognized gene for celiac or for gluten sensitivity. You will then know if you need to watch your child for symptoms of gluten intolerance. This is the only test that will tell if your child has the propensity to develop this intolerance (if your child is also tested and also carries the gene); it does not say whether s/he will develop it though. When you test negative for celiac you unfortunately have to live in this grey world where nothing is black or white. I know some people find this harder than others to handle, that they want a label. I guess I am fortunate that I can live with this "not knowing" because I do know I can't eat gluten and that's where I would be if I were a diagnosed celiac, too.

If you still have problems after you have omitted gluten from your diet, there are tests for other food sensitivites that can be performed, or you can keep a food diary and eliminate the most likely foods and then add them back in one at a time to see what is bothering you. I have become a great believer in self help. I guess for me it is more of an achievement to discover something for myself than be "told" by someone. We are all different....

Good luck on your decision making. When all is said and done, you have to do what is right for you.

ENF Enthusiast
If you want to know if you carry a gene that you could pass on to your baby, then I agree with ENF to get the genetic testing done; this will show if you carry a recognized gene for celiac or for gluten sensitivity. You will then know if you need to watch your child for symptoms of gluten intolerance. This is the only test that will tell if your child has the propensity to develop this intolerance (if your child is also tested and also carries the gene); it does not say whether s/he will develop it though..............

The child could also get Celiac genes from the father. I have one from each parent.

blondebombshell Collaborator
The child could also get Celiac genes from the father. I have one from each parent.

no one on either side of my family has celiac.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      Curious question

    2. - Amy Barnett posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Question

    3. - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      Alarming

    4. - Maggieinsc commented on Scott Adams's article in Winter 2026 Issue
      5

      Celiac Disease and Longevity: Can Treatment and Healing Improve Long-Term Survival?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,321
    • Most Online (within 30 mins)
      7,748

    Yvonne Thomas
    Newest Member
    Yvonne Thomas
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Jmartes71
      So I've been dealing with chasing the name celiac because of my body actively dealing with health issues related to celiac though not eating. Diagnosed in 1994 before foods eliminated from diet. After 25 years with former pcp I googled celiac specialist and she wasn't because of what ive been through. I wanted my results to be sent to my pcp but nothing was sent.I have email copies.I did one zoom call with np with team member from celiac specialist in Nov 2025 and she asked me why I wanted to know why I wanted the celiac diagnosis so bad, I sad I don't, its my life and I need revalidaion because its affecting me.KB stated well it shows you are.I asked then why am I going through all this.I was labeled unruly. Its been a celiac circus and medical has caused anxiety and depression no fault to my own other than being born with bad genetics. How is it legal for medical professionals to gaslight patients that are with an ailment coming for help to be downplayed? KB put in my records that she personally spent 120min with me and I think the zoom call was discussing celiac 80 min ONE ZOOM call.SHE is responsible for not explaining to my pcp about celiac disease am I right?
    • Amy Barnett
      What is the best liquid multivitamin for celiac disease?
    • Jmartes71
      I've noticed with my age and menopause my smell for bread gives me severe migraines and I know this.Its alarming that there are all these fabulous bakeries, sandwich places pizza places popping up in confined areas.Just the other day I suffered a migraine after I got done with my mri when a guy with a brown paper bag walk in front of me and I smelled that fresh dough bread with tuna, I got a migraine when we got home.I hate im that sensitive. Its alarming these places are popping up in airports as well.I just saw on the news that the airport ( can't remember which  one)was going to have a fabulous smelling bakery. Not for sensitive celiacs, this can alter their health during their travel which isn't safe. More awareness really NEEDS to be promoted, so much more than just a food consumption!FYI I did write to Stanislaus to let them know my thoughts on the medical field not knowing much about celiac and how it affects one.I also did message my gi the 3 specialist names that was given on previous post on questions on celiac. I pray its not on deaf door.
    • xxnonamexx
      Thanks for the info. I have been taking the ones you recommended but when I saw this I was curious if it was something else to add to the journey Thank  
    • Jane07
      I used to be able to get the Rivera yougut i havent been able to get it lately. I like getting it did say it did say gluten free. I just looking for a good yogurt that gluten free that i can add some fruit and nuts to any suggestion would be helpful  thanks
×
×
  • 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.