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possibleceliac

Should I get a second opinion?

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I had a blood test based on family history (grandma tested positive, mom not diagnosed but at least has a sensitivity). I have no apparent symptoms but I figured it couldn't hurt to get the blood test done. I saw the doctor (a GP), asked for the test, and agreed to go gluten free if the test was positive (decided not to do the endoscopy) . They called the next week and told me it was positive so I went gluten free.

Well...later after reading more about the blood tests I was curious about my numbers I figured out I could find them in my online portal so I took a look and then long story short a lot of research ensued. 

Now I am just trying to figure out if I am crazy or if I should get a second opinion because I think my test may be negative? I was tested for the six things below and everyone of them can back within the reference range except for the very last one IGA. It came back as 394 in a reference range of 87-352. With everything I have read a high total IGA does not necessarily indicate Celiac. Is my reasoning possible? or is that incorrect?

Gliadin Ab IgA

Gliadin Ab IgG

Tissue Transglutaminase Ab IgA

Tissue Transglutaminase Ab IgG

Endomysial Ab IgA

IgA

I will be staying on a gluten free diet (unless I have to retest) until I can either confirm the results one way or another but I wanted to figure out if I should even pursue a second opinion. (I did try to talk to another doctor in the practice about the results and it was clear after she told me that if I didn't have any symptoms I could just eat gluten that she didn't know much about celiac)

Thank You!!

 
 
 
 
 
 

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1 minute ago, possibleceliac said:

I had a blood test based on family history (grandma tested positive, mom not diagnosed but at least has a sensitivity). I have no apparent symptoms but I figured it couldn't hurt to get the blood test done. I saw the doctor (a GP), asked for the test, and agreed to go gluten free if the test was positive (decided not to do the endoscopy) . They called the next week and told me it was positive so I went gluten free.

Well...later after reading more about the blood tests I was curious about my numbers I figured out I could find them in my online portal so I took a look and then long story short a lot of research ensued. 

Now I am just trying to figure out if I am crazy or if I should get a second opinion because I think my test may be negative? I was tested for the six things below and everyone of them can back within the reference range except for the very last one IGA. It came back as 394 in a reference range of 87-352. With everything I have read a high total IGA does not necessarily indicate Celiac. Is my reasoning possible? or is that incorrect?

Gliadin Ab IgA

Gliadin Ab IgG

Tissue Transglutaminase Ab IgA

Tissue Transglutaminase Ab IgG

Endomysial Ab IgA

IgA

I will be staying on a gluten free diet (unless I have to retest) until I can either confirm the results one way or another but I wanted to figure out if I should even pursue a second opinion. (I did try to talk to another doctor in the practice about the results and it was clear after she told me that if I didn't have any symptoms I could just eat gluten that she didn't know much about celiac)

Thank You!!

 
 
 
 
 
 

Welcome.  

The IgA test in this case (celiac testing) is a control test.  It determines if the celiac antibodies tests are valid (working).  In your case, you are a little over, but doctors are looking at results being under range or close to zero.    So, all your IgA tests (e.g. TTG IgA) should be accurate.  So....I am not a doctor, but your tests would indicate that you do not have celiac disease.  

If you were experiencing symptoms, I would suggest getting another doctor who is celiac savvy and can read basic lab results!  Some celiacs are seronegative, yet still have intestinal damage.  If celiac disease is ruled out, you might be Non-Celiac Gluten Intolerant (sensitive).  This means same symptoms as celiac disease, but you never actually damage the GI tract.  

Finally, you might not have celiac disease now, but if you develop symptoms ever in your life, get re-tested.  

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Thank you for responding! All of that is what I thought I've just never felt like I needed to second guess a doctor before so I wanted to make sure it wasn't just me reading the results that way. I do definitely want to get a doctor's opinion who knows celiac but I wanted to make sure I had reason to first.

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Your results were comparable to my kid's.   She was negative.  She had no symptoms.  But....if she develops symptoms (like abdominal pain, bloating, anemia, etc.), she will get retested as she can develop celiac disease at anytime in her life.  We are hoping that she never gets celiac disease, but we do not want for her to go undiagnosed for years (like me) and develop other complications (e.g. osteoporosis).  

At least you know that celiac disease runs in your family.  You know now that you might be susceptible to developing autoimmune disorders and can treat them early.    But again, you might never ever get sick with anything other than the flu or a cold.  ?

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