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Those with Celiac...

DH has been going thru lots of tests lately, Lactose Intolerance, bloodwork for gluten and Celiac.  They all came back negative, however today with the colonoscopy the doc suggested coming in for the celiac tests, with the results of the issues we found today. 

So... did you find out immediately or did it take a few tests? I guess part of me questions because it seems some foods seem to have more adverse reacations.

FWIW, they believe he has colitis and IBD (IBS). But were waiting for the tests and biopsy they took including the one from the polyp found. 

Thanks! :)

Re: Those with Celiac...

  • Peyton had to do a round of blood tests and a GI scope which took a week to come back.  Berkeley is on round two of blood tests, next will be a GI scope.

    FWIW, my MIL was diagnosed with colitis (also had tons of kidney/liver issues for no known reason--no drinking, etc) and, in retrospect we all think she had Celiac.

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  • Thanks Robyn!  I was hoping you'd have this type of response.  Good luck with Berkeley, no for for a little one :(

     

     

  • Now that Peyton is GF, life is so much better.  She has gained weight (she was 28lbs for three years and is now up to 33lbs--still super skinny but way better), no longer has headaches, stomachaches, etc all the time.  Life is good now that we have a diagnosis.  Good luck!!
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  • Good to hear, I just want him to not feel like his stomach is about to explode Indifferent

     

  • Poor guy! I hope he gets some answers quick.
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  • So he had a colonoscopy today, and the doc wants him to come back and do an upper endoscopy to check for Celiac?  Do I have it right?

    That would tick me off - why the heck couldn't they do both upper and lower at the same time to save your DH another anesthesia, you know?  Did they see something in the colonoscopy that's leading them to believe that Celiac is more probable than they thought?

    I guess I would find out exactly what Celiac blood test they ran already. The thing is, there's no one surefire way to diagnose this disease, and every.single.doctor I've been involved with (8 of them since the beginning of my fiasco) has very outdated information on testing and diagnosis.  Here's a really helpful blog I've been learning a lot from, and a video explaining why the biopsy is becoming a thing of the past:

     http://www.healthnowmedical.com/blog/2011/07/18/intestinal-biopsy-unnecessary-to-diagnose-celiac-disease/

    Sorry he's dealing with this.  Don't let them just label him as having IBD - that's a catchall term for "some unknown thing is causing GI problems".  It's not a diagnosis at all.  :(  FWIW, the average amount of time it takes a Celiac to get diagnosed is 11 years.  Good luck to you both - I hope he find relief very soon! 

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  • imagejulandjo:

    So he had a colonoscopy today, and the doc wants him to come back and do an upper endoscopy to check for Celiac?  Do I have it right?

    Yes, After the other tests came back negative, his GP wanted him to do the colon.   He talked to a fantastic GI doc in Plano, TX and he told DH that he should request both, and DH just told me he didnt (lovely).   But yes, the GI doc suggests "await results if negative check sprue panel and LTT. 

    That would tick me off - why the heck couldn't they do both upper and lower at the same time to save your DH another anesthesia, you know?  Did they see something in the colonoscopy that's leading them to believe that Celiac is more probable than they thought?

    They didnt tell us that they saw something, its just on the "reccomendations"

    I guess I would find out exactly what Celiac blood test they ran already.

    I didnt know there were different Celiac blood tests, good to know!  I will pull the old lab work and try to figure it out. :) 

     The thing is, there's no one surefire way to diagnose this disease, and every.single.doctor I've been involved with (8 of them since the beginning of my fiasco) has very outdated information on testing and diagnosis.  Here's a really helpful blog I've been learning a lot from, and a video explaining why the biopsy is becoming a thing of the past:

     http://www.healthnowmedical.com/blog/2011/07/18/intestinal-biopsy-unnecessary-to-diagnose-celiac-disease/

    THANK YOU! :

    Sorry he's dealing with this.  Don't let them just label him as having IBD - that's a catchall term for "some unknown thing is causing GI problems".

    That is what the doc in Plano, TX said, I think it was more along the lines of a "lazy diagnosis"  He is doing a lot of research on this type of thing, and from what DH said of their about 20 min phone conversation, I was quite impressed, and I am not typically impressed by medical professionals :)

    http://www.kennethbrownmd.com/ 

     It's not a diagnosis at all.  :(  FWIW, the average amount of time it takes a Celiac to get diagnosed is 11 years.  Good luck to you both - I hope he find relief very soon!   Thank you again!

  • Also, is he being tested for food allergies?  I'd pursue that at the same time.
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  • Good call, I know he had some allergy testing in high school, but thats been 12'ish years ago.  :)

    Thanks!

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