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GI doc testing questions

jhoff
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jhoff Newbie
jhoff
Posted
(edited)

Hi everyone,

Last month my general doctor ran a celiac panel and said it came back 'inconclusive' seems like he did not run the full panel and my number for Tissue Transglutam Ab Iga is 4 with the lab saying 4 or higher is positive.

Doc also ran Immunoglobulin A and he said it was 'kind of low' and to try eating gluten free - clearly this doc has no clue what he is talking about anyway per his advice i ate 99% gluten free for 3 weeks  before making an appointment with a GI doctor.

GI docs nurse said to eat as much gluten as I can tolerate and they will do a full blood panel and 'scopes' ? that was almost 10 days ago, appointment is in 2 days and I have been having at least some gluten everyday since but have been getting rather sick (vomiting, horrible headaches, bloating, extreme fatigue, achy, nauseous, etc) so it hasn't been easy to eat a lot of anything...

Did i screw up my chances of a accurate test? if i eat extra for the next 48 hours will that help to show anything in the blood panel? I probably wont be able to have the scopes for at least 2 weeks so that will be nearly 4 weeks eating gluten after not eating for 3...

Does my 3 week gluten-free vacation make a difference for these tests?

thanks for the guidance 

 

Edited by jhoff
  • 2 weeks later...
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cyclinglady Grand Master
cyclinglady
Posted
On 7/30/2018 at 11:59 AM, jhoff said:

Hi everyone,

Last month my general doctor ran a celiac panel and said it came back 'inconclusive' seems like he did not run the full panel and my number for Tissue Transglutam Ab Iga is 4 with the lab saying 4 or higher is positive.

Doc also ran Immunoglobulin A and he said it was 'kind of low' and to try eating gluten free - clearly this doc has no clue what he is talking about anyway per his advice i ate 99% gluten free for 3 weeks  before making an appointment with a GI doctor.

GI docs nurse said to eat as much gluten as I can tolerate and they will do a full blood panel and 'scopes' ? that was almost 10 days ago, appointment is in 2 days and I have been having at least some gluten everyday since but have been getting rather sick (vomiting, horrible headaches, bloating, extreme fatigue, achy, nauseous, etc) so it hasn't been easy to eat a lot of anything...

Did i screw up my chances of a accurate test? if i eat extra for the next 48 hours will that help to show anything in the blood panel? I probably wont be able to have the scopes for at least 2 weeks so that will be nearly 4 weeks eating gluten after not eating for 3...

Does my 3 week gluten-free vacation make a difference for these tests?

thanks for the guidance 

 

Maybe.  All celiac testing requires you t o be on a full gluten diet (daily) for 8 to 12 weeks prior to a blood draw and 2 to 4 weeks prior to an endoscopy.  It takes time for antibodies to build up.  Best to be conservative because you do not know if you generate antibodies fast or build them slowly.  I did read that in some patients, they can heal in as little as two weeks.  It depends on the patient, their immune system and how well they embrace the gluten-free diet (most newbies take months to master the diet....ma bye even years).  

Hopefully the endoscopy reveals more.  Make sure the GI takes plenty of samples and from the appropriate locations.  Google it as I am running out of time!  

Take care!  

tessa25 Rising Star
tessa25
Posted

My DGP blood test numbers go up 6 weeks after eating gluten and my TTG numbers go up 10 weeks after eating gluten. So the 12 weeks of eating gluten requirement makes sense.

jhoff Newbie
jhoff
Posted
  • Author

thanks guys...  apparently i am IGA deficient also so my GI doc ran the complete panel knowing it would probably be negative, due to not eating gluten for part of the weeks leading up to blood draw however it he said it came back with a 'weak positive' and that i have both genetic markers so i have an endoscopy scheduled in about 2 weeks which will be about 4 weeks on gluten... i still feel awful, i was hoping symptoms would ease up but at least i have an end in sight and hopefully the scope will give me some solid answers.

jhoff Newbie
jhoff
Posted
  • Author

also either way i think i am going to avoid gluten, GI doc is pretty convinced i am celiac but did say it could be 'just NCGS" same treatment so maybe it doesnt really matter if its formal diagnosis or not but i'd just like to know if that makes sense and especially since my 3 year old is struggling and going through testing of his own, as  a side note his blood was negative his original GI doc wanted me to 'drop it' good thing i got a second option because he didnt even have the full panel done and apparently its common for negative blood and positive biospys at least according to the new doc, anyway waiting is so hard! especially when you have to eat food that makes you feel awful

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