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Need Help Interpreting Celiac Blood Test

Jesikita

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Jesikita Newbie
Jesikita
Posted

Hi all, I'm just starting the process of testing for celiac disease but recently switched jobs after I got the initial blood test and no longer have insurance to follow up with the results. My doctors won't even entertain a call from me to inquire. Can anyone help me understand my results and what I should do in the next three months before my new insurance kicks in? And there after? 

 

Celiac disease panel: Range 0-19

my value = 98(*)

 

Tissue Transglutaminase IGA : Range 0-19

my value = 74(*)

 

Gliadin Antibodies IGA: Range 0-19

my value = 9

 

 

 

Any insight would be greatly appreciated =) 

 

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cyclinglady Grand Master
cyclinglady
Posted

We are not doctors, but it looks like you have celiac disease.  I do not know what the first test is "Celiac Disease Panel" but it is positive.   The next step is usually an endoscopy that includes about six biopsies.  But if you do not have insurance you can choose to go gluten free now or wait until you have insurance and get the endoscopy but you would have to keep eating gluten until all testing is done!     It would be nice if your doctor would give you a celiac disease diagnosis based on your blood test alone.  Can you follow-up and pay cash?  

 

The reason for a definitive diagnosis is that 1) you can let other family members know since it runs in families and 2) it helps with dietary compliance.  I was officially diagnosed two years ago, but my husband went gluten free per the poor advice from his GP and my allergist 14 years ago.  It worked.  He feels great, but we'll never really know if he has celiac disease.  He refuses to consume gluten for 12 weeks in order to get an accurate blood test.  Why bother?  He's doing great.  It was handy for me.  Getting our kid tested is a breeze and my doctors are quick to run tests (e.g. bone scan, etc.) for me because I have that diagnosis.  

 

Do some more research and you'll figure out what is best for you.  

Jesikita Newbie
Jesikita
Posted
  • Author

We are not doctors, but it looks like you have celiac disease.  I do not know what the first test is "Celiac Disease Panel" but it is positive.   The next step is usually an endoscopy that includes about six biopsies.  But if you do not have insurance you can choose to go gluten free now or wait until you have insurance and get the endoscopy but you would have to keep eating gluten until all testing is done!     It would be nice if your doctor would give you a celiac disease diagnosis based on your blood test alone.  Can you follow-up and pay cash?  

 

The reason for a definitive diagnosis is that 1) you can let other family members know since it runs in families and 2) it helps with dietary compliance.  I was officially diagnosed two years ago, but my husband went gluten free per the poor advice from his GP and my allergist 14 years ago.  It worked.  He feels great, but we'll never really know if he has celiac disease.  He refuses to consume gluten for 12 weeks in order to get an accurate blood test.  Why bother?  He's doing great.  It was handy for me.  Getting our kid tested is a breeze and my doctors are quick to run tests (e.g. bone scan, etc.) for me because I have that diagnosis.  

 

Do some more research and you'll figure out what is best for you.  

 

Thanks for the response. But what does Tissue Transglutaminase IGA actually mean? The results did not say positive or negative and they were super confusing to read. And when I googled the results, ranges were different all over the place so I was getting frustrated for sure. I can follow up and pay cash but I don't think I could handle an endoscopy without insurance. I guess I'll wait till the insurance kicks in to schedule that. I just hate having to wait several more months before I can start making better life decisions that's all. My aunt has been positively diagnosed with celiac disease via colonoscopy so I know it does run in my family. 

cyclinglady Grand Master
cyclinglady
Posted

Here's an explanation of tTG:

 

Open Original Shared Link

 

But, you need to look at your lab's ranges as many labs have different ranges.  Your result was 74 and the normal range for your lab is between 0 and 19.  Definitely positive!  

 

Again, the choice is yours whether to proceed with a firm diagnosis or not.   

 

I wish you well!  

cyclinglady Grand Master
cyclinglady
Posted

Oh, celiac disease is usually caught via an endoscopy (through the mouth).  I guess your Aunt's doctor managed to get all the way to the end of the small intestine.  Lucky for her!   

nvsmom Community Regular
nvsmom
Posted

The tissue transglutaminase IgA (tTG IgA) is very positive - close to 4 times the upper limit of normal.  The tTG IgA is the most widely used test for celiac disease, and it is 95% specific to celiac disease.  The 5% of the time a positive is not caused by celiac disease it is usually caused by other autoimmune diseases, and is a weak positive.  I doubt that is you though. to me, it looks as though you have celiac disease.   :(

 

There's more info on the tests in this report: 

Open Original Shared Link

 

As Cylclinglady said, you can go gluten-free now or wait until you see a doctor.  If you choose to go gluten-free now, you may have to re-introduce gluten so future testing can be done. Blood tests for celiac disease require 2-3 months of about 1-2 slices of bread per day, and the endoscopic biopsy require 2-4 weeks of gluten.  Re-introducing gluten after you start feeling better can be tough to do.... Staying on gluten for the next few months might be tough too.  

 

If you can see a doctor immediately after your three months is up, I think you should consider continuing to eat gluten, but reduce your gluten to the equivalent of one slice of bread per day, half a slice would be okay too.  You don't want to make yourself really sick, just sick enough to be accurately tested... That sounds awful doesn't it?

 

Welcome to the boards.   :)

Jesikita Newbie
Jesikita
Posted
  • Author

Oh, celiac disease is usually caught via an endoscopy (through the mouth).  I guess your Aunt's doctor managed to get all the way to the end of the small intestine.  Lucky for her!   

 

Perhaps and perhaps not. But I'm interested in the endoscopy for sure. Thanks for all the insight! It feels like the calm before the storm. Just have to wait three months to make an appointment and then however long it takes to get me in. Thanks for the help guys!

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Jesikita Newbie
Jesikita
Posted
  • Author

The tissue transglutaminase IgA (tTG IgA) is very positive - close to 4 times the upper limit of normal.  The tTG IgA is the most widely used test for celiac disease, and it is 95% specific to celiac disease.  The 5% of the time a positive is not caused by celiac disease it is usually caused by other autoimmune diseases, and is a weak positive.  I doubt that is you though. to me, it looks as though you have celiac disease.   :(

 

There's more info on the tests in this report: 

Open Original Shared Link

 

As Cylclinglady said, you can go gluten-free now or wait until you see a doctor.  If you choose to go gluten-free now, you may have to re-introduce gluten so future testing can be done. Blood tests for celiac disease require 2-3 months of about 1-2 slices of bread per day, and the endoscopic biopsy require 2-4 weeks of gluten.  Re-introducing gluten after you start feeling better can be tough to do.... Staying on gluten for the next few months might be tough too.  

 

If you can see a doctor immediately after your three months is up, I think you should consider continuing to eat gluten, but reduce your gluten to the equivalent of one slice of bread per day, half a slice would be okay too.  You don't want to make yourself really sick, just sick enough to be accurately tested... That sounds awful doesn't it?

 

Welcome to the boards.   :)

 

Thanks nvsmom. This is scary and when I got the blood test I was only trying to rule out gluten sensitivity. I guess that's not an option now. My symptoms were mostly GI related and I had the worst reactions from coffee, broccoli and spinach, but was considering lactose as a potential villan as well. I've tried to be dilligent about keeping a food diet but with celiac I know that the effects can come up to two days after introducing the food and really, it is in so much of what we eat. I'm lucky to have a best friend, sister-in law and aunt who have celiac for support. I'm not happy its a possibility but looking at the glass half full, if it allows my body to eat green vegetables again once healed, at least there is somewhat of a bright side too. Thanks for the insights!

frieze Community Regular
frieze
Posted

you needn't wait till the insurance kicks in to make the appt.  just make it for after it does...

RMJ Mentor
RMJ
Posted

If you think lactose bothers you (common in celiacs) I think you may be able to eliminate that now without messing up any celiac tests? Does anyone know for sure?

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