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

blondebombshell

By blondebombshell
in Doctors

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blondebombshell Collaborator
blondebombshell
Posted

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?

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mushroom Proficient
mushroom
Posted
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
ENF
Posted

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
blondebombshell
Posted
  • Author
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
ENF
Posted
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
blondebombshell
Posted
  • Author
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
ENF
Posted
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:

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momxyz Contributor
momxyz
Posted

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
blondebombshell
Posted
  • Author
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
mushroom
Posted
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
ENF
Posted
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
blondebombshell
Posted
  • Author
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.

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