Negative Ttg And Deamidated Gliadin Test Was Only Positive Test For Celiac

[mamacat]

I just wanted to share my story in case someone else is searching for more information on testing for celiac. I had terrible joint pain, stomach issues, fatigue, and other symptoms, which led me to get tested by my dr. The celiac panel was from Quest Diagnostics and included the Total IGA, ttG, and Deamidated Gliadin IGA tests. Of these, I was ONLY positive for the Deamidated Gliadin IGA test!

My results:

TISSUE TRANSGLUTAMINASE ANTIBODY, IGA = 3 (Ref <5=Neg) U/mL

IMMUNOGLOBULIN A =238 (Ref 81-463 mg/dL)

GLIADIN (DEAMIDATED) AB (IGA) =>100 (Ref >20=Pos) Units

This led two doctors to believe I didn't have Celiac because I was negative for ttG, which they claim is the old trusty test. I went to Jefferson Hospital in Philly that has a Celiac Center, and they were smart enough to do upper endoscopy. The biopsy showed I was POSITIVE for Celiac!!!! Just got diagnosed last week and starting gluten-free diet. Hope to feel better soon! I think the Deamidated test is far more sensitive at detecting Celiac, since it shows the antibodies themselves. I was more than five times the normal positive limit, which should've tipped off the first doctors I saw.

Just want to share with people that you have to be your own advocate. Don't let doctors brush you off. One dr. I saw didn't even realize the deamidated gliadin test is a newer, more reliable version than the old gliadin tests, so there is a LOT of mis-information out there. If you suspect Celiac, don't give up with testing and good luck!

[Cara in Boston]

Thanks for sharing and welcome to the group.

You are so lucky you live near a celiac center. My brother in Boise has been told numerous times he doesn't have an issue with gluten since he doesn't have a positive TTG test and no GI symptoms. They'd rather spend thousands of dollars doing MRIs on his brain to find out why he has dizzy spells and numbness in his fingers (and a whole host of other symptoms that I also had until going gluten free.)

Boston has both an adult celiac center (Beth Israel) and a children's celiac center (Children's Hospital Boston) and I am so thankful. They were able to diagnose my son even though he also had conflicting blood test results. Other doctors gave up, but they continued looking and found damage on the biopsy. If I had accepted the diagnosis of the first doctor (at another well respected Boston hospital) my son would still be eating gluten and would be a very, very sick little boy. (This was the doctor that said I had "read too many magazine articles . . ." when I kept pressing him for actual answers about the weird blood tests.)

Cara

[mamacat]

Boston has both an adult celiac center (Beth Israel) and a children's celiac center (Children's Hospital Boston) and I am so thankful. They were able to diagnose my son even though he also had conflicting blood test results. Other doctors gave up, but they continued looking and found damage on the biopsy. If I had accepted the diagnosis of the first doctor (at another well respected Boston hospital) my son would still be eating gluten and would be a very, very sick little boy. (This was the doctor that said I had "read too many magazine articles . . ." when I kept pressing him for actual answers about the weird blood tests.)

Hi Cara,

I totally hear you! The best doctors I've had had always been willing to listen and HEAR my concerns, and work with me on finding the right diagnosis. I think some doctors just don't realize their role should be as a partner in managing your health. Instead, some have a "god-complex" who treat their patients as uneducated minions who should just silently accept whatever they dish out, even if their knowledge is outdated. Very sad, especially when the average time frame to diagnose Celiac is 11 years! I wonder how many people who had to wait a decade for a DX had mixed test results and were told by their dr. that no follow-up was needed...

Glad to hear you were near a good center for your family too and tell your brother not to give up. There is a dr out there who will listen to him somewhere- you just have to keep looking!