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Tested positive for Celiac with no traditional symptons

DianeWayans13

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DianeWayans13 Newbie
DianeWayans13
Posted

I went in to an ear, nose and throat doc after months of dealing with swelling in my throat which had landed me in the ER a few times. They initially thought it was an allergic reaction but I don't respond to typical allergy treatments so suggested an ent. This doctor ordered a number of blood tests and one came back positive for possible celiac disease. He put me on a gluten free diet which I've been on now for a month but haven't noticed any change. My throat still swells out of nowhere and then subsides as it had been doing. 

I will stay on the diet for the 3 months per his instructions to see if it ends up having an effect but it doesn't seem to be doing anything so far. I have no other symptons aside from gerd from time to time when I eat too many sweets. 

Has anyone else had something similar happen to them?

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GFinDC Veteran
GFinDC
Posted

Hi Diane,

There is a condition called eosinophilic esophagitis that might fit you.

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ironictruth Proficient
ironictruth
Posted

 what blood test was positive?

PinkyGurl Explorer
PinkyGurl
Posted

Sadly he should NOT have told you to go gluten free tell you see a GI doctor and have an endoscopy to get a actual diagnosis!  IMO you should get back on gluten immediately and see a GI specialist for end and biopsy.

erinmichelle Newbie
erinmichelle
Posted

What you are describing was my husband's main symptom for years before he was diagnosed.  His entire face would swell along with his throat.  Since being gluten free for over two years now, he has not had the face swelling but does feel throat tightness on occasion.  

DianeWayans13 Newbie
DianeWayans13
Posted
  • Author

Gliad (deamidated) Ab, IgG  blood test was the one I had a positive result with. 

I will ask the dr when I return in a couple months but am curious if this test would be positive without actually having a food sensitivity.

GFinDC Veteran
GFinDC
Posted
9 hours ago, DianeWayans13 said:

Gliad (deamidated) Ab, IgG  blood test was the one I had a positive result with. 

I will ask the dr when I return in a couple months but am curious if this test would be positive without actually having a food sensitivity.

Hi Diane,

The DGP IgG is very specific to celiac disease reactions.  So it wouldn't be positive for another condition.  Symptoms are not a perfectly dependable way to diagnose celiac disease.  Many people have no GI system symptoms but still have celiac disease.  They may no have symptoms at all (called silent celiac) or they may have symptoms in other body organs.  Skin, nerves, muscles, liver, brain etc can all be affected.

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ironictruth Proficient
ironictruth
Posted

I was told by Celiac Disease Center at Mass General that they do not put emphasis on DGP tests as they had some trouble with them. Too many kids testing positive with negative biopsies. Interestingly, those kids were coming to the center for a reason. 

The center in Chicago informed me that at the very least DGP IGG is more reliable then IGA and weak positive IGA's can be disregarded. 

I have found studies linking DGP IGA to liver issues absent a known celiac gene or any gut damage. A further study was published on kids with elevated DGP which went negative on a normal diet. I have tested moderate positive to a combined DGP IGA/IGG test one day, but negative to separated IGA and IGG tests literally within a day or so. 

This goes against everything you will find online about the deamidated tests. You will read that they are extremely accurate. But they are still in their infancy so there is a learning curve here.

Sadly, I agree with the above folks. You should still be on gluten and get the biopsy. It sounds like you should be seeing a GI doc regardless of celiac. 

I have spent the last 18 months of my life, off gluten, on gluten, off gluten, getting scoped twice (once on gluten and once if) and trying to figure out the whole DGP thing in light of non specific inflammation that was found in my recent scope. All this, only to be told I may need to reintroduce gluten yet again.

I have been sick ever since getting back on gluten the first time. And I had a doc who literally forgot to draw the labs while I was eating it. Now we have no idea why I am still sick and it is scary. 

So find the best GI you can and start getting some testing. Keep us all posted.  

artsunshine Apprentice
artsunshine
Posted

Hi, i never had typical symptoms and i have celiac. My only symptom was horrible bone pain, and I also thought that positive celiac test is some kind of mistake. Many people dont have symptoms at all. Good luck!

cyclinglady Grand Master
cyclinglady
Posted

Diane, have you researched Mast Cell Activation Syndrome?  It is like an allergy, but not.  It is a relatively "new" disorder, but one of our old members, Jebby, has it and she is a premie baby doctor, so it is real!  

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