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I'm waiting on a call back from my gastroenterologist to discuss results. About 7 years ago, I was told I had Celiac's based on symptoms and followed a gluten free diet. At some point, my gastro decided to do an endoscopy and I got negative results (I was not told to eat gluten before this test which I now realize is how the test should have been done). Diagnosed with IBS (bloody stools, diarrhea, colonoscopies). I have been eating gluten since they told me I didn't have Celiac's. I have also been diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome-an autoimmune issue) and Polycystic Ovarian Syndrome (PCOS) With increased nausea, vomiting, GI issues, I went back to the gastro and they decided to run the Celiac blood test. Wondering if anyone in the community could shed any light on the markers/genes…

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You need a new doctor/GI specialist! If you've been eating gluten then you need to have the full celiac serum panel run which consists of 6 tests. 

Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA 


Also can be termed this way:

Endomysial Antibody IgA
Tissue Transglutaminase IgA 
GLIADIN IgG
GLIADIN IgA
Total Serum IgA 
Deamidated Gliadin Peptide (DGP) IgA and IgG

 

This gene test they ran on you is used not to determine if you have celiac disease but to rule out celiac disease. About 1/3 of the population has the genetic make up but only a small portion of that will actually have celiac disease. The results of your test only mean you are like 1/3 of the population. They've wasted your time.

You need to have the celiac serum panel & if ANYTHING on it turns up positive, even mildly so, then you need an endoscopic biopsy - 6 samples - looking for celiac disease. 

They've really screwed you up by not doing things the right way in the first place. They didn't know what they were doing & you have paid the price. 

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Oh Laura,  I can feel the frustration from SquirmingItch.  

I am a little confused.  When you had the gene test, how long were you back on gluten?  A gluten challenge ranges from six to eight weeks. If you started the challenge and became very ill within a week or so, your GI might have just ordered the gene test to help rule out celiac disease.  

It looks like you have the genes as stated on your test results, but only a few actually develop it.  

Please clarify how long you had been consuming gluten.  Either your GI is an idiot or he was trying to save you from becoming more ill.   

If you felt better on the gluten-free diet and after you iron out this mess, you might consider going back to being gluten-free.  It could help you with your other issues.  Consider too, looking into Mast cell Activation Syndrome which is often affiliated with POTS. 

https://www.ehlers-danlos.com/one-gene-mutation-links-three-mysterious-debilitating-diseases/

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4 hours ago, squirmingitch said:

You need a new doctor/GI specialist! If you've been eating gluten then you need to have the full celiac serum panel run which consists of 6 tests. 

Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA 


Also can be termed this way:

Endomysial Antibody IgA
Tissue Transglutaminase IgA 
GLIADIN IgG
GLIADIN IgA
Total Serum IgA 
Deamidated Gliadin Peptide (DGP) IgA and IgG

 

This gene test they ran on you is used not to determine if you have celiac disease but to rule out celiac disease. About 1/3 of the population has the genetic make up but only a small portion of that will actually have celiac disease. The results of your test only mean you are like 1/3 of the population. They've wasted your time.

You need to have the celiac serum panel & if ANYTHING on it turns up positive, even mildly so, then you need an endoscopic biopsy - 6 samples - looking for celiac disease. 

They've really screwed you up by not doing things the right way in the first place. They didn't know what they were doing & you have paid the price. 

Thanks for your response. They actually did the panels that you mentioned and they were all negative. So, they said that I have the gene but not the disease. I feel frustrated myself as they didn't handle this properly from the onset. I should have clarified in my original post. I was confused about what the specific genes meant insofar as autoimmune issues and thought this would be my best resource. I avoid gluten for the most part but consume it occasionally. I think I have a sensitivity to it although I don't have Celiac's.

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If you had been gluten light, the celiac blood tests could easily be negative.  That happens all the time.  Not to mention that some celiacs are seronegative.  You can not eliminate celiac disease yet.  You could also have Non-celiac gluten sensitivity.  

I am sorry that you are stuck in diagnostic limbo land.  Talk to your GI about your gene results and how he/she thinks you should proceed.  

I wish you well.  

Edited by cyclinglady

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32 minutes ago, cyclinglady said:

Oh Laura,  I can feel the frustration from SquirmingItch.  

I am a little confused.  When you had the gene test, how long were you back on gluten?  A gluten challenge ranges from six to eight weeks. If you started the challenge and became very ill within a week or so, your GI might have just ordered the gene test to help rule out celiac disease.  

It looks like you have the genes as stated on your test results, but only a few actually develop it.  

Please clarify how long you had been consuming gluten.  Either your GI is an idiot or he was trying to save you from becoming more ill.   

If you felt better on the gluten-free diet and after you iron out this mess, you might consider going back to being gluten-free.  It could help you with your other issues.  Consider too, looking into Mast cell Activation Syndrome which is often affiliated with POTS. 

https://www.ehlers-danlos.com/one-gene-mutation-links-three-mysterious-debilitating-diseases/

Yes, I have been frustrated as well. It has been difficult with navigating these issues. I began eating gluten again after the endoscopy results were that I did not, in fact, have Celiac's. I had not been eating gluten at all prior to that and a friend who is a doctor recently made me aware that protocol is to consume gluten prior to the endoscopy (for several weeks). So, I have had gluten for the past 4-5 years. I think I have a sensitivity to it as I seem to have increased GI issues and worsened POTS symptoms when I eat gluten. I try to avoid it. Thanks for the tip about the Mast Cell Activation Syndrome. I have only been diagnosed with POTS for 2.5-3 years so it is still pretty new. I appreciate the advice and tips.

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So I might have misunderstood the timeline? You had the celiac serum panel AFTER you had been eating gluten every day for 12 weeks & it all turned up negative?

But you were gluten free when you had the negative endoscopy?

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