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Is There Any Definitive List As To What Causes High Ttg Besides Celiac?

adab8ca

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adab8ca Enthusiast
adab8ca
Posted

I am still awaiting biopsy and to refresh, my TTG was >200 (range <10) as well as having IgG AGA and IgA AGA (both around 30, range <10). NO GI issues, but bad neuropathy.

I cannot find a definitive list as to what else causes ttg to be elevated, except for some vague references to "other autoimmune conditions"..To me, that makes the test not sound very specific! Would a false positive give such a screaming high result anyway? Some websites say the ttg is the best test out there, others say not so much...It's crazy but I know you will all understand that I WANT a diagnosis and WANT to try to get on with my life. I don't have type 1 diabetes, liver problems or Hash. thyroid, and these were the only definitive interferences I could find....I don't understand how they could offer this test if OTHER autoimmune problems can cause elevations AND biopsies can be falsely negative. I guess I was looking for what kind of result a "false positive" may give....

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sb2178 Enthusiast
sb2178
Posted

I've seen references to elevated TTGs and Crohn's disease. Otherwise, it is almost always associated with celiac disease. Especially when it is that high, there really aren't negative biopsies. Negative biopsies occur a lot more often with borderline or low elevated TTGs.

Celiac diagnosis is not perfect. Diagnosis has actually improved a lot over the last 15 years, but the tests are less than perfect. I would definitely still try a gluten free diet for a long time given your bloodwork. You could have the "gluten ataxia" or neurological form rather than intestinal.

Also, make sure your nutrient levels are checked.

cassP Contributor
cassP
Posted

I am still awaiting biopsy and to refresh, my TTG was >200 (range <10) as well as having IgG AGA and IgA AGA (both around 30, range <10). NO GI issues, but bad neuropathy.

I cannot find a definitive list as to what else causes ttg to be elevated, except for some vague references to "other autoimmune conditions"..To me, that makes the test not sound very specific! Would a false positive give such a screaming high result anyway? Some websites say the ttg is the best test out there, others say not so much...It's crazy but I know you will all understand that I WANT a diagnosis and WANT to try to get on with my life. I don't have type 1 diabetes, liver problems or Hash. thyroid, and these were the only definitive interferences I could find....I don't understand how they could offer this test if OTHER autoimmune problems can cause elevations AND biopsies can be falsely negative. I guess I was looking for what kind of result a "false positive" may give....

ive only seen the ttg related to Celiac, Crohns, and autoimmune liver disease. um- your numbers are PRETTY HIGH- and im not so sure i believe in a false positive- i understand wanting a "diagnosis", but as long as your liver & thyroid are fine- i would presume u have Celiac. at the very least i would presume u need to be 100% Gluten Free. of course stay in touch with your doc- get your regular checkups... i think endos & colonoscopies are good for ruling out anything more serious.

Skylark Collaborator
Skylark
Posted

TTG in combination with anti-gliadin antibodies is pretty strong evidence that your neuropathy is caused by gluten. TTG can be present in rheumatoid arthritis, type 1 diabetes and inflammatory bowel diseases but you would have symptoms for any of those. For villous damage, anti-EMA is actually the strongest marker; however, since your stomach is fine you might not have the gut component of celiac.

You realize you may have a negative biopsy, right? If your body is "pointing" the autoimmunity at your nervous system you can have a lot of neuropathy but no real GI involvement. I think you already have plenty of evidence that gluten is giving you problems.

If your biopsy is normal, what you do is go off gluten and ask your doctor to retest the TTG in six months to a year. (Your doctor may tell you this if he's good.) If the TTG goes down, you have a REAL diagnosis.

Gemini Experienced
Gemini
Posted

I am still awaiting biopsy and to refresh, my TTG was >200 (range <10) as well as having IgG AGA and IgA AGA (both around 30, range <10). NO GI issues, but bad neuropathy.

I cannot find a definitive list as to what else causes ttg to be elevated, except for some vague references to "other autoimmune conditions"..To me, that makes the test not sound very specific! Would a false positive give such a screaming high result anyway? Some websites say the ttg is the best test out there, others say not so much...It's crazy but I know you will all understand that I WANT a diagnosis and WANT to try to get on with my life. I don't have type 1 diabetes, liver problems or Hash. thyroid, and these were the only definitive interferences I could find....I don't understand how they could offer this test if OTHER autoimmune problems can cause elevations AND biopsies can be falsely negative. I guess I was looking for what kind of result a "false positive" may give....

I would HIGHLY suggest you have the EMA blood test added to those other tests because it's 100% specific for Celiac Disease. Probability for having Celiac is 99% if you have a positive EMA and a positive tTg...which you already have. My numbers were as high as yours...my AGA numbers were higher and I am classic textbook Celiac. You sound like you have the neurological form of Celiac but Celiac you are! At this point, the biopsy is optional.

This is a prime example of why a doctor should never rely on a tTg alone for screening purposes. Too many other issues may cause a positive.

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