Confusing Test Results

[Jenny0409]

A little background: I'm 29 and had my thyroid removed last fall due to advanced Graves Disease (Hyperthyroid). My thyroid was so big it was choking me. Anyway, shortly after surgery we realized my calcium wasn't regulating itself and I've since been on 3600 mg in pill form per day and on 500 mg of Magnesium per day. I have consistent muscle cramps and spasm and lots of bone pain that were thought to be a result of the calcium levels and I still believe that. However, my endocrinologist recently decided a Celiac Blood panel was in order. These are my results. He believes me to have Celiac Disease, has referred me to a Gastro and a dietician. I'm confused how I can have negative results on two of the three test and be thought to have Celiac. Any thoughts?

 

 

 

Immunoglobulin A, QN, Serum- 167 (Range is 91-414)

 

Deamidated Gliadin ABS, IGA- 8 (Range 0-19)

 

T-Transglutaminase (TTG) IGA- 16 (Range 0-3) High Positive

 

[RMJ]

The first test you list is not for celiac disease. It is for your total IgA to see if it is normal. Yours is. (If it wasn't the other two tests you list for specific types of IgA would not be valid). As to the TTG and DGP tests, some people with celiac are positive on one, some on the other, some on both.

[Jenny0409]

Oh ok, so he is likely correct to assume I could be Celiac. I'm very hesitant to go forward with a biopsy. I've been through a lot medically this past year. I won't go into detail but it's been difficult. I don't know if I could handle going through that if it isn't 100% necessary. Other than being the most definitive diagnostic tool for the disease are there any other benefits to going through the biopsy process? To be frank, I'm terrified not of the result but the procedure itself. I'm fine with living gluten free regardless of the biopsy results.

[Maddi]

Sorry to intrude, just wanted to tell you not to worry about the endoscopy/biopsy. I had one last year and I was also worried but it was easy peasy. It takes about 10 minutes and you're sedated. Then you're sent home! I understand your fears but think about now many endoscopies are performed everyday! Most older people have had them at least once and it's not really a big deal. Hope it goes well!

[Jenny0409]

Thank you and you aren't intruding. I am actually declining the endoscopy for now. It's very expensive even with my insurance. It seems like it only serves as a confirmation and will tell me how extensive the damage, if any, correct? I'm not sure I want to know how much damage there is just yet. I was able to be given the diagnosis without that procedure so it kind of seems like a waste of money for me. To each their own, I just don't know that I can justify the expense of a test that is only confirmation of something my doctor is already confident I have. Plus, I read that sometimes people receive a negative result only to years later find out they do have celiac disease.

[nvsmom]

...Thank you and you aren't intruding. I am actually declining the endoscopy for now. It's very expensive even with my insurance. It seems like it only . Plus, I read that sometimes people receive a negative result only to years later find out they do have celiac disease.

 

This does happen in a minority of cases. Up to 1 in 5 celiacs gets a negative biopsy.  You had a positive test, some symptoms, and an autoimmune disease that is strongly linked with celiac disease, so it is most likely celiac disease.  A positive test would just confirm, and a negative test would not disprove it, but only not support the celiac diagnosis.

 

Also, the specificity of a positive tTG igA is 95%, so only 5% of positive tests are caused by something other than celiac disease.  It's a pretty good test.

 

If you want confirmation, retest the DGP IgA and tTG IgA after 6-12 months gluten-free.  Chances are that they'll have dropped significantly.

 

Welcome to the board!  I hope you have a fast recovery.