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Jen1104

How accurate is the Ttg IGA test?

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A little background:

I am not a diagnosed celiac even though some of my villi were flattened during endoscope  (even though I had been gluten free for a few months before test--yep, did things a** backwards), but the 5 biopsies taken were negative.  Which didn't really surprise me.

I also have almost EVERY symptom of celiac I've ever seen listed (for 25 years) and after taking gluten out of my diet, I have a horrible reaction if I get a crumb (exhaustion, worse neuropathy, D, throbbing stomach, nausea, irritability, anger, etc, etc.)

My 67 yr old mom has had similar symptoms for about 5 years but not to the extreme as mine.  She has unexplained neuropathy in legs and feet (she's not diabetic), tired a lot, gets severe anxiety and brain fog sometimes so bad she feels like she is losing her mind. (Her eyes look weird, almost crossed a bit, and she gets confused).  She also gets very irritable which is not like her at all.

I asked her to get the full celiac panel done and she finally went to her dr.  They refused to do full panel and just did the screener, Ttg IGA.  I thought I had read online that it wasn't as accurate as other celiac tests, but what I found online today is that it is 98% accurate at detecting antibodies.  They didn't, however, do test for total IGA, to see if she is deficient.

Has anyone heard how accurate just the screener is?  Should she maybe see a GI dr and push for full panel?  Her regular dr was even the one who suggested gluten could be the cause of her neuropathy, but then didn't do full panel.  Makes no sense.  Arrrggggg!

BTW, one of my brothers has unexplained neuropathy and mental fog and another brother has anxiety issues and heart problems.

Sorry so long...Just wanted to get your thoughts on how accurate the screener is!

Thanks, Jen

**Forgot to add that my mom's screener test did turn out negative!

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1 hour ago, Jen1104 said:

A little background:

I am not a diagnosed celiac even though some of my villi were flattened during endoscope  (even though I had been gluten free for a few months before test--yep, did things a** backwards), but the 5 biopsies taken were negative.  Which didn't really surprise me.

I also have almost EVERY symptom of celiac I've ever seen listed (for 25 years) and after taking gluten out of my diet, I have a horrible reaction if I get a crumb (exhaustion, worse neuropathy, D, throbbing stomach, nausea, irritability, anger, etc, etc.)

My 67 yr old mom has had similar symptoms for about 5 years but not to the extreme as mine.  She has unexplained neuropathy in legs and feet (she's not diabetic), tired a lot, gets severe anxiety and brain fog sometimes so bad she feels like she is losing her mind. (Her eyes look weird, almost crossed a bit, and she gets confused).  She also gets very irritable which is not like her at all.

I asked her to get the full celiac panel done and she finally went to her dr.  They refused to do full panel and just did the screener, Ttg IGA.  I thought I had read online that it wasn't as accurate as other celiac tests, but what I found online today is that it is 98% accurate at detecting antibodies.  They didn't, however, do test for total IGA, to see if she is deficient.

Has anyone heard how accurate just the screener is?  Should she maybe see a GI dr and push for full panel?  Her regular dr was even the one who suggested gluten could be the cause of her neuropathy, but then didn't do full panel.  Makes no sense.  Arrrggggg!

BTW, one of my brothers has unexplained neuropathy and mental fog and another brother has anxiety issues and heart problems.

Sorry so long...Just wanted to get your thoughts on how accurate the screener is!

Thanks, Jen

**Forgot to add that my mom's screener test did turn out negative!

Welcome.  

While the TTG tests are very good, they do not catch all celiacs (like me who just tests positive to ONLY the DGP IgA).  Not to mention, that some celiacs are seronegative— period.  Consider pushing for the complete celiac panel, but know that it requires you (or your mom) to be on a full gluten diet 8 to 12 weeks prior to the blood draw (2 to 4 weeks prior to an endoscopy).  

It might help to get further testing if you have other concurrent issues like anemia, osteoporosis, vitamin deficiencies (e.g. low iron/ferritin), or other autoimmune disorders like Hashimoto’s Thyroiditis.  

 


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test (DGP IgA only) and Endoscopy: March 2013

Hashimoto's Thyroiditis

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Repeat endoscopy/Biopsies: Healed

Celiac.com - Celiac Disease Board Moderator

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Thanks C-Lady.  I'd like to have my mom push for full panel but pretty sure she won't.  She's not too keen on going gluten free anyway after seeing how careful and strict I have to be. (She likes her restaurants!) I've told her countless times that she may end up a lot worse--like me--but she doesn't get it at this point in time.  ?

I was tested for Hashimoto's recently.  I need to call to see if they have my results. (TSH and T3/T4 were normal) Have lost half my hair in last year. So, wanted to rule Hashi's in or out. Hair loss is getting really embarrassing.

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7 hours ago, Jen1104 said:

Have lost half my hair in last year. So, wanted to rule Hashi's in or out. Hair loss is getting really embarrassing.

Jen1104,

Have you considered having your Iron levels checked?

20 hours ago, Jen1104 said:

irritability, anger, etc, etc.)

It might explain the hair loss and the anger irritability issues.

Here is a heathline article on the association of Low Iron levels and potentially associated hair loss.

https://www.healthline.com/health/iron-deficiency-and-hair-loss#prevention

As for the irritability issues see this research from Japan entitled "Iron Deficiency Without Anemia Is Associated with Anger and Fatigue in Young Japanese Women"

https://link.springer.com/article/10.1007%2Fs12011-014-9963-1

Or this thread that has a lot of links about Iron and/or Iron Deficiency Anemia and/or other things that can cause chronic fatigue and exhaustion entitled constantly tired.

https://www.celiac.com/forums/topic/122735-constantly-tired/?_fromLogin=1#replyForm

I hope this is helpful but it is not medical advice.

Good luck on your continued journey.

2 Timothy 2:7 “Consider what I say; and the Lord give thee understanding in all things”

Posterboy by the Grace of God,

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