I feel like I am celiac, but my tests have been inconclusive- any recommendations?

[karen14589]

I have has mild GI issues for a few years now (5ish), but in the last year they have gone from a few upsets a month to a few every week, so I sought answers by going to the Dr. 

My symptoms, related or not

• bloating
• diarrhea/ soft stools, esp after an upset stomach
• burping
• uncomfortable after eating (feeling full quickly, indigestion)
• headaches
• tiredness
• feeling hungry with a full belly
• Raynaud's
• ridiculous night grinding

After getting myself to the GI, she ran oodles of tests which all came back normal with the exception of the immunoglobulin levels. I will post my results below.

Celiac test

• Deamidated gliadin abs, iga units 2
  • negative range 0-19
• Deamidated gliadin abs, igg units 2
  • negative range 0-19
• t-transglutaminsae (ttg) iga units less than 2
  • negative range 0-3
• t-transglutaminase (ttg) igg units less than 2
  • negative range 0-5

Immunoglobulin test (reason why my celiac test was inconclusive)

• total igg 1136 mg/dl
  • normal range 700-1600
• imunoglobulin a 65 mg/dl
  • normal range 87-352
• iggm 85 mg/dl
  • normal range 26-217
• imunoglobulin e 247
  • normal range 0-100

My GI had me try a low fodmap diet which has been really enlightening. I felt amazing within a few days and had no issues other than some constipation until reintroduction phase. My stomach didnt feel great after some orange juice, but I had a sudden resurgence of symptoms following gluten. 

 

While my GI has offered to do an endo to either confirm or deny it being celiac, this test is expensive and requires someone to drive you home. I have already spent quite a bit on tests and this test is far more expensive than I can afford at the moment; therefore, this is something that will likely need to wait a few months. I would like a diagnosis so I know whether occasional cheating is harming me (celiac) or just feels bad ("gluten intolerance"). Any recommendations on how to proceed here?

[kareng]

21 minutes ago, karen14589 said:

I have has mild GI issues for a few years now (5ish), but in the last year they have gone from a few upsets a month to a few every week, so I sought answers by going to the Dr. 

My symptoms, related or not

• bloating
• diarrhea/ soft stools, esp after an upset stomach
• burping
• uncomfortable after eating (feeling full quickly, indigestion)
• headaches
• tiredness
• feeling hungry with a full belly
• Raynaud's
• ridiculous night grinding

After getting myself to the GI, she ran oodles of tests which all came back normal with the exception of the immunoglobulin levels. I will post my results below.

Celiac test

• Deamidated gliadin abs, iga units 2
  • negative range 0-19
• Deamidated gliadin abs, igg units 2
  • negative range 0-19
• t-transglutaminsae (ttg) iga units less than 2
  • negative range 0-3
• t-transglutaminase (ttg) igg units less than 2
  • negative range 0-5

Immunoglobulin test (reason why my celiac test was inconclusive)

• total igg 1136 mg/dl
  • normal range 700-1600
• imunoglobulin a 65 mg/dl
  • normal range 87-352
• iggm 85 mg/dl
  • normal range 26-217
• imunoglobulin e 247
  • normal range 0-100

My GI had me try a low fodmap diet which has been really enlightening. I felt amazing within a few days and had no issues other than some constipation until reintroduction phase. My stomach didnt feel great after some orange juice, but I had a sudden resurgence of symptoms following gluten. 

 

While my GI has offered to do an endo to either confirm or deny it being celiac, this test is expensive and requires someone to drive you home. I have already spent quite a bit on tests and this test is far more expensive than I can afford at the moment; therefore, this is something that will likely need to wait a few months. I would like a diagnosis so I know whether occasional cheating is harming me (celiac) or just feels bad ("gluten intolerance"). Any recommendations on how to proceed here?

Those   Celiac tests look negative.  What makes you say the test is inconclusive?

 

If that is your total serum IGA, it is plenty to get a good test result.

 

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Edited June 25, 2018 by kareng

[karen14589]

My Dr said she didn't trust the test results since my IGA was low. If you think there are still enough to tell, what could be causing my issues? 

 

[kareng]

2 minutes ago, karen14589 said:

My Dr said she didn't trust the test results since my IGA was low. If you think there are still enough to tell, what could be causing my issues? 

 

Its not what I think, that's what the U of C Celiac center says.

Sounds like its a FODMAPS issue.  You had such immediate results to eating low FODMAP.  Celiac takes more than a few days to go away.  The nice thing about a FODMAP issue is that, while wheat is a high FODMAP food, you don't need to worry about little crumbs of breading from a shared fryer or the small amount of wheat in regular soy sauce.  

 

 

[cyclinglady]

The Immunoglobulin A (IgA) test has to be practically zero for it to affect the celiac IgA tests.  In the case of celiac disease testing,  the Immunoglobulin A test is used as a control test.  

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You could be a seronegative celiac.  The only way to know for sure would be to get the endoscopy.  It would help rule out other possible things too.  

Good luck!  I am glad you are feeling better.