Help!

[djsweis]

I am not sure how to post a new post so I am adding on to this one.  I tested positive with high risk on genetic testing.  I was told by GI doctor that this means nothing, only that I have a higher chance of getting celiac than him.  I have Hashimoto disease and tested positive on ANA testing also.  I have had stomach issues all my life and I am now 50.  Went gluten free 2 years ago.  Went in for my 50 year old colonscopy so decided to test for Celiac.  I had only eaten gluten for 1 week prior to the test.   GI doc stated that no celiac, that I had Duodenal Erosion and most likely from over use of aspirin or ibuprofen.  (I don't use either)  Endoscopy stated histologically unremarkable duodenal muscoa and peptic duodenitis.   I am hoping no Celiac, but with stomach issues, high risk genetic test, duodenal erosion and hashimoto disease I am worried that something was missed or that I did not have enough damage being off of gluten for 2 years and only on it for 1 week prior to test.  Any opinions or ideas?  Thank you

 

[kareng]

I am not sure how to post a new post so I am adding on to this one.  I tested positive with high risk on genetic testing.  I was told by GI doctor that this means nothing, only that I have a higher chance of getting celiac than him.  I have Hashimoto disease and tested positive on ANA testing also.  I have had stomach issues all my life and I am now 50.  Went gluten free 2 years ago.  Went in for my 50 year old colonscopy so decided to test for Celiac.  I had only eaten gluten for 1 week prior to the test.   GI doc stated that no celiac, that I had Duodenal Erosion and most likely from over use of aspirin or ibuprofen.  (I don't use either)  Endoscopy stated histologically unremarkable duodenal muscoa and peptic duodenitis.   I am hoping no Celiac, but with stomach issues, high risk genetic test, duodenal erosion and hashimoto disease I am worried that something was missed or that I did not have enough damage being off of gluten for 2 years and only on it for 1 week prior to test.  Any opinions or ideas?  Thank you

If you were gluten-free for 2 years, Celiac testing means nothing. 1 week on gluten is likely not enough to show the damage needed to show up on a biopsy.

[GFinDC]

Hi Djsweis,

 

You can start a new thread by clicking the blue "start a new topic" button above the green bar right side.

 

Yep, celiac testing is no use if you haven't been eating gluten for a while.  The usual requirement is to eat gluten for 8 to 12 weeks prior to testing.  Hashimoto's Thyroiditis is more common in celiacs than other people.  Celiac and Hashimoto's are both auto-immune conditions.

[kareng]

Hi Djsweis,

 

You can start a new thread by clicking the blue "start a new topic" button above the green bar right side.

 

I split this post into his/ her post into a separate topic.

[GFinDC]

I split this post into his/ her post into a separate topic.

 

That's just what u dew, ain't it Crayon?  U 'ol post splitter u!  Good job! 

 

 

Sorry for the off topic DJWeis.

[NoGlutenCooties]

Hi DJ -

 

The doctor was correct in his assessment of the genetic tests - it is estimated that about 30% or so of the population has the genes that predispose them to Celiac but only about 1% actually get it.  If you don't have the genes, you cannot get Celiac - but having the genes does not guarantee you that you WILL get it.  Also, even if you don't have the genes, you can still get non-Celiac gluten intolerance or be gluten sensitive.

 

After being gluten-free for 2 years, as others have said, the tests are useless.  However, did your stomach issues clear up?  Did your symptoms come back once you started eating gluten again?  That would be a strong indicator regardless of the outcome of the tests.

[kareng]

That's just what u dew, ain't it Crayon?  U 'ol post splitter u!  Good job! 

 

 

Sorry for the off topic DJWeis.

That's me! Built of steel and made to last!

[djsweis]

Yes all issues have come back.  Fatigue, rapid heart, palpitations and the constant stomach aches.  Aches and pains every where.  It took a few days and now I am still paying for it.  The first couple of days I felt fine, then by the time I was having my procedure approx. 8 days on gluten I hit the wall.  I had the procedure on 12/19 and today I am still feeling horrible.   Trying to get back on track, hoping I will start to feel better soon.

[GFinDC]

Hi DJ,

 

Many of the members here are not officially diagnosed celiac.  But we do know how our bodies react to eating gluten.  If it hurts don't eat it is simple way to think about it.  A dr's opinion can't change how our bodies react, and there is no cure for celiac disease at the moment.  So there is limited value to a formal diagnosis IMHO.  But each person has to decide for themselves if a diagnosis is important to them, or needed.

 

@ Crayon, yep, I figured that!